Wednesday, December 23, 2009

rambling thoughts

Too sick to write for real. Just thoughts...

Still restricted to bed. Can't be touched, cause it hurts. palpitations resonating through my upper body every 10 seconds. hot and cold flashes are painful and frequent.

trying to avoid e.r. they won't help. so what will? cardiologist will only deal with palpitations

how to get a doctor to take me seriously. dr. g is known to make me cry by saying that i just need to exercise. but he's the only pots doctor i have.

paroxysmal rage and crying spells are making me scary and useless. maybe i'm just mentally unstable

Dr. W--look into sleep meds for worsening insomnia

Custom CTO? How to get one. If it would help.

Dr. K--help with emotional pain

how to keep living this life? when you just don't want to anymore. nothing anyone does can actually help.

poor buttons, my puppy with gallbladder disease, she hurts all the time. she has no choice but to wait, too.

consider a port for frequent fluid infusions. symptoms seem to lessen with increased salt and fluids

Friday, December 18, 2009

Frustrating Heart Symptom

I have had this symptom occasionally for a long time, but every doctor has ignored it. I just want to know what it is, especially since it is getting more and more frequent.

So, originally, I labeled this symptom as a palpitation. But it seems to be more than that.

I will do my best to describe.

It feels like my heart forgets to beat, and then starts pounding and trying to make up for what it missed. It feels a bit like being startled. But I don't just feel it in my chest. I feel the pounding in my hands and the front of my face, too.

It usually happens spontaneously. But when it's really bad, it will happen repeatedly, especially when I try to talk or even just exhale.

Another way to describe it is the feeling you get when you hold your breath for too long, so your heart starts pounding. But I'm not holding my breath.

I would really like to know what is happening, and why. I also wonder if an anti-arrhythmia drug might help.

Too bad none of my cardiologists have ever taken me seriously. But it feels like a symptom that should be taken seriously. It disrupts whatever I'm doing, often for an entire day. The only relief comes from laying flat and breathing steadily (not too fast or slow).

Yet another reason to never again leave my bed.

The Inevitable Reality Check

Whenever I write a painfully real blog, I later feel guilty for sharing this dark side with the world. I don't think I'll delete the last post. But I will say that rage attacks are horrific for anyone involved. And I'm currently suffering from Pre-Menstrual Psychosis. I believe this is caused by compression of the pituitary gland. So, I will officially be skipping my period for the foreseeable future. There is no good reason to go through that kind of torture. I do not like being possessed and out of control.

However, my hormones simply made my everyday struggles seem even worse. My feelings were still valid. Just a bit augmented.

Thanks for caring.

Thursday, December 17, 2009

The Emotional Toll

Today was truly unbearable. My symptoms have been so persistent. My functioning has been non-existent. The misery is so all-encompassing. It reached that point again...where I just can't take it anymore. The hysteria lasted longer than it ever has. The rage and despair just took over. I was a person possessed. I know it put such a strain on my family. I wanted to stop. I just couldn't. For hours. I finally put myself in a cold shower, after 3 Klonopins failed to calm me. I feel so terrible for my family. My loved ones are the only reason I haven't left this world much sooner. There's nothing within me that would stop me from giving up, completely and utterly. How else would I go through 7 years of intense distress...10+ years of pain? I have no choice. I can't even choose to cut myself anymore. I have no idea what I would do without my support. They are the only reason I hold on.

It's just that sometimes, it feels like a tug of war. My body is constantly telling me that something is horribly wrong. But there is nothing to do about it. Absolutely nothing. And it's so frustrating for those around me to not be able to do anything to help. But the tug of war is in me. I want to give up. I want to succumb. I don't know how to face another day (which I've said 1,000 times before). But I can't succumb, because I could never hurt my family that way, after all they've done for me.

But when will it be enough? When will I finally have gone through enough? How bad does it have to get before they'd let me leave?

I know the answer to this question. I don't get to leave. It will never be an option, no matter how unbearable my illness becomes.

I guess, on days like today, when I am so completely out of control, I wish we could have just called 911, had an ambulance come over and tranquilize me. That is what I needed. The medicine didn't work. After several hours, I put myself in a cold shower and screamed and cried. I had to treat my body like a body possessed. It was completely out of my control. Believe me. I'm great at meditation and progressive muscle relaxation. I can lower my blood pressure within a couple minutes (which is very unsafe). But none of that was an option today. With this level of depression and rage, it truly is beyond your control. So, sometimes it's best to just isolate yourself, so your loved ones don't have to go through all of the pain with you.

The shower worked this time. I truly hope that next time, we will have something stronger than Klonopin. I've been dealing with these hysterical rage attacks for quite a while.

I'm just sure I shouldn't be sharing all of this information with the whole internet. However, I know that other people in my situation read this page sometimes. And I'd rather not put up a front, in the one place I'm supposed to be able to express describe what it is really like to go through torture for 7 years straight.

I understand that this is a down time. Today is a day when I need to learn, again, how to come to terms with my situation. I will reach a point of acceptance again. And the cycle will continue. As it has for so long.

Do you know how long 7 1/2 years is? Think of how much has happened in 7 1/2 years. And all that time, I've been feeling just like this. All these same symptoms. Constant, unending pain. Body failing. Since I was 18 freaking years old.

I follow the people that used to be my friends on Facebook. I watch, I read, I follow their lives. I see all of the things they do, all of the places they travel to, all they achieve and accomplish. I lost my shot at achieving anything. I had to give up on my dreams.

And honestly, most of the time, I can accept that. I really can. I just wish that each day didn't have to be so hard. If I just had to lie in bed all day and accept the loss of everything I should be doing, I could accept that. Seriously. Believe me, I've been accepting that for quite a while. Since high school, my symptoms have made me miss out on things that I should be doing. If I could just rest during the day, in semi-comfort, I would be able to handle this better.

But that's not my life. I don't just lie in bed all day, comfortably, watching the minutes drag by. Nope. I hurt. I hurt so much. The pain is so omnipresent. My body twitches uncontrollably. My heart cannot keep a steady rhythm, so it races and skips and pounds. I feel like I'm being electrocuted. I can't get comfortable no matter how hard I try.

Is it time to seek medical marijuana? Ketamine? Is it time to be hospitalized and tranquilized full-time? All of those sound preferable to my present.

But I wouldn't know where to start. And I don't think my family could accept that. It's hard for them to accept that I should not be getting out of bed for anything, most of the time.

I'm just glad I'm not alone. I need to try to stop venting to the same people. It's too much of a burden for them, because they love me so much. That's why I put myself in a cold shower today. I didn't want to drag my mom through the storm with me.

I wish I could stop crying, so I could stop torturing my loved ones.

Tuesday, December 15, 2009

Loneliness as time crawls by

Nothing new here. Just spending more days isolated in my room, confined to bed except for bathroom trips (thank goodness for that).

I don't so much mind my time being pointless (for now). I do mind that time moves so slowly. That I am so often alone. And that I can't have more "comfortable" time.

So much of the time, I'm having twitches throughout my body, especially in my legs. The muscles are fatigued and achy because they twitch all the time.

I'm also having trouble chewing, due to jaw pain.

It hurts to move even in tiny ways so often. Like right now, I get a wave of pain throughout my body every time I move. It's so frustrating.

Then, of course, there's the ice pick in the head type headache that lasts 2-5 days at a time.

Then, there's the baseline headache of pressure everywhere and the "sunken halo" headache.

I've been having palpitations more recently, as well. It feels like my heart misses a beat or two, then tries frantically to make up for lost time. I feel my heart pounding through my chest, neck, and shoulders when this happens.

The knee pain is very sharp with weight bearing, or even sitting or laying in the wrong position.

The body ache is quite severe tonight, as well.

Oh well. That's all that is happening here. I wish this time could go faster. I wish I could skip ahead to better days. I know there will be better days. It's just getting there that is so hard.

Thursday, December 10, 2009

Denied again. The Plan.

"we cannot book a surgery until:

the bone density has significantly improved
a follow-up visit at TCI is done
the CCF failure is again confirmed with an ICT
the TCI surgical committee ratifies the CCF revision


Blunt, as always. Initially, this news was absolutely heart-breaking. I spent about an hour in hysterical, inconsolable, angry tears. However, I now have a bit of a more concrete plan.

#1 Survive the next 2 months, doing whatever is necessary. This includes: spend less time alone, don't feel obliged to work the 1-2 hours/week scheduled, focus on the goal.

#2 Go in and get the DEXA scan on February 22. Pray for "significant improvement".

#3 Schedule a follow-up and new Invasive Cervical Traction surgery date a.s.a.p. (hoping early March?)

#4 Schedule my LAST surgery, a Cranio-Cervical Fusion Revision a.s.a.p. (hoping in April?)

#5 Recover and move on with LIFE!!!!

That all sounds great. I'm glad I wrote it out. I don't feel quite that confident yet. Intense sadness makes you feel a bit fragile. However, I still believe that recovery is a possibility for me.

Over the years of illness, however, the term "Recovery" has had dynamic meaning to me. Initially, after my first brain surgery, at age eighteen (2002), recovery meant complete recovery. It meant going on to live a "normal" and active life with no pain, no sickness, and no restrictions. With the extended length of the illness, going into the eighth year since decompression surgery with NO lasting relief, I now have a new meaning for recovery.

I understand that my life will never be without restrictions. I will always need plenty of rest. I will never work 40 hours/week.
It will never be without sickness (significantly more than average).
And it will certainly not be without pain.

I now have modified my hope for the future, to be more realistic for someone with this amount of nerve damage (from postponed surgeries) and the bones and joints of someone fifty years older than me.

My hope is to have pain that only interferes with my functioning some of the time. My hope is to resume working 10-20 hours/week. My hope is to have enough health and energy to have a (small) family. My hope is to make my life about more than just me. To contribute more to the lives of loved ones. To be a shoulder to cry on, instead of the one crying. To payback all of those that have helped me get to this point. To be the supporter and joy that my lifelong partner deserves. To bring happiness instead of stealing it. To stop surviving my life and start living it!

I need to find a way to accept that I have lost much of my teens and 20's to this illness. That doesn't mean there's nothing left. Look ahead, and stop looking back. Don't hold onto worthless resentments of everything that was lost. Understand that what really matters is what I haven't lost...what I still have left.

I know these things to be true. It's really living that way that is the challenge. It's finding a way to feel that way all of the time. Not just know it, but feel it.

Especially when I have to cope with being weighed down by seemingly limitless bouts of depression. For the majority of the last year, I've had a lingering numbness about my health. That's one kind of depression. Today, I do not feel numb. The floodgates are open. The tears haven't really stopped all day. Today, I feel incredible, deep, desperate agony.

But I do understand that this is just today. If I would just go to sleep, it will be a new day. A new day! To keep developing that most-hated virtue named patience. And it's challenging partner: perseverance.

So I will keep living. Because I have many people that love me. That's what makes me so lucky. I may still be crying ('cause I can't seem to stop), I will certainly have pain, and I'll want to give up many more times. But giving up is never an option. How could I let down all of the people that have loved me and cared for me through these very dark times? That would be ungrateful, unforgivable.

I apologize for the intense mood swings. It's probably best that I spent most of the day alone. This is quite unbearable. But somehow, someway, there is still hope. Because there is still a chance, a possibility for a better life; for a change. I'm not out of chances yet, so I'll keep fighting, even when the pain is this complete.

Thank you to my family for loving me through this...literally, pushing me through this with love.

Wednesday, December 9, 2009

Desperate Message to New York


This is Carolyn. In October, my endocrinologist, Dr. Camacho, finally agreed to start me on Forteo. (20 mcg injected daily) I'm supposed to wait until the end of February for my next bone scan. She is certain that by then, the DEXA will reflect a higher bone density. However, it doesn't feel like I can wait even that long.

I previously taught piano lessons to 25 students. Gradually, I've had to stop working completely. I am now restricted to bed 99% of the time. I'm missing out on my life. I've been quite patient, but I am now in a very desperate situation. I've been seeing a neurologist at a pain clinic, but it doesn't seem to matter anymore. Nothing can help with the severe headaches, arrhythmias, tachycardia, blackouts, choking spells, and nausea. Most of the time, I am so hypersensitive that I can't be touched.

The only thing that temporarily relieves symptoms is traction. That is the reason I am so certain that the revision of my cranio-cervical fusion is the only thing that can help. My fusion was done in 2003, when I was 19.. In 2008, it was found to be "inadequate" during invasive cervical traction. I'm 26 this month.

I understand that I am supposed to wait until I have been on Forteo for 6-12 months. However, it took me 15 months just to convince my doctor to start the Forteo after finding out my BMD was low. My condition has been on a steady decline during that time.

I am wondering how soon it would be possible to schedule surgery. Please. I understand that I am supposed to continue waiting. It just doesn't seem like a possibility anymore. I know how invasive the surgery is, and how long the recovery takes. But the longer I wait to have surgery, the worse state I'll be in at the time of surgery. Is there anything that can be done?

Thank you for your help.


Tuesday, December 8, 2009

A wedding.......but still in bed the rest of the time

The wedding and related festivities were wonderful. Luckily, my body cooperated when it had to. Of course, we knew not to expect very much of it. We even had a pillow so I could lie on the floor at the restaurant.

Since then, my body has continued on low. I often wear the same pajamas for 5 days straight. I only leave the house about once a week (and even that seems like way too much). I spend basically all of my time in bed or on the couch. My body is really failing. I'm just grateful for days that the pain stays at a 7 or below. But many days, it goes higher.

It's hard to really comprehend how long I've been sick. Luckily, I'm too sick and tired to really think about all of the lost time. Still, looking back, it seems that my functioning has decreased a lot this year, meaning I was more functional before. It's hard to even remember that time. Time goes by so very slowly. That's why the wait for surgery (hopefully this spring) is so difficult.

I would write more, but there hasn't been much to say. My only medical update is: STILL WAITING!

I still have the constant headache and constant joint pain, both of which get worse when I try to get out of bed. The fatigue varies in intensity from day to day, but is still ever-present. I also have extra headaches, that feel like pressure in the head or sometimes ice-picks digging into my skull.

A frequent symptom bothering me lately is severe hypersensitivity. This is when my skin is so sensitive that my clothes hurt. My body feels too hot and too cold all at once. And I can't get comfortable no matter what I do. I also feel that my spine is being compressed like an accordion. When I feel like this, the only option is sedation. Any other existence is unbearable.

My mom was away today, so my grandparents came to spend time with me, which was really nice, even though, as always, I provide no entertainment. This bed-bound life is very boring. Especially when even talking takes too much energy.

The only reason I have the energy to type right now is that it's late at night. Computer usage is now limited to high-energy times. That's how low it's gotten.

Okay, headache is an 8.5 tonight. OUCH. I haven't been sleeping well, but I guess I'll try. If nothing else, the room will be dark and silent...just the way I like it.

Friday, November 27, 2009

Holiday Weekend

Yesterday was Thanksgiving, which was a lot of fun, but also quite a strain to get through. Tomorrow is my mom's wedding, which will be a wonderful day, but also a huge physical challenge. It is so important that tomorrow is NOT about me. That means: no passing out, no semi-conscious spells, no severe pain episodes that disrupt this important day. That's quite a challenge. Currently, my body is punishing me for the very active day yesterday (two different holiday dinners in different towns, and a game of pool). Today is payday. Every time I do more than I should, I pay for it later. There is no escape!!! Nothing comes free. So, today, I spent about an hour unconscious. Since then, I've been trying to rest with overwhelming head pain (about an 8, I guess...). It also hurts to move my body at all. Even typing. So I will keep resting and spend the day in bed. Hopefully, I can take a bath tonight, so I'm fresh and clean for the big day, tomorrow.

The other big news: It seems that I may be able to make a trip out to Maryland to see Dr. Francomano in the new year. Nothing is certain yet. But it is at least a possibility. It would be wonderful to see her, because she fully understands patients just like me, with Chiari, Cranial settling/instability, EDS, and POTS. If I were her patient, she would be able to help me get through the challenges of recovering from my upcoming surgery, which will hopefully be in the spring. I'll post more once I actually have some concrete information, not just an idea.

Friday, November 13, 2009

High pressure

Not blood pressure. That's very low, of course. The pressure inside my head seems to be at an all time high lately. My temples are so very swollen. Like my brain no longer fits in my head. It hurts so much. I wish I could have a spinal tap to empty out some CSF and decrease the pressure.

I've been trying to sort through tons of old junk in my room, but it just looks neater. It's actually a disorganized disaster. But it takes so much out of me to get anything done.

I barely move anymore. I'm limp and lifeless almost all of the time. I can't take it.

I want to go work out. I want to be in shape and not hate the way I look. I want to improve my body fat percentage. I want to feel well enough to do something that requires wearing make-up. I have such a meaningless existence, during the wait. I can't believe I'm still waiting. Watching more and more days pass by. Wasting time. So many years wasted. When can I finally live again? My joints will continue deteriorating for the rest of my life. I just want to get my head fixed while I've still got some life left to live.

What a waste! I wish this didn't all take so long. I wish I could have had all of my traumatic surgeries very close together. Then, spent a couple years recovering {which is how long it takes with POTS}. Instead of wasting so many years between surgeries. I want a life.

Sorry for complaining. I know it could be so much worse. But the headache pain, all-over pain, nausea, weakness, fatigue, and general sickness make me pretty crabby and miserable.

Sunday, November 1, 2009

Lost time...

The Forteo shots are going well. The needle is the tiniest thing I've ever seen. And it comes pre-dosed in a pen, so it's really easy to use. The medicine doesn't seem to effect me at all, either. So that's good. This medicine is the very best medicine for increasing bone mass, which is what I need. Just wishing every moment that I'd been able to start this medication when I first went to an endocrinologist for Osteopenia in August 2008. Those 15, yes FIFTEEN months of my life have been wasting time (at least medically). And more than that, I'm still waiting on the surgery to revise the surgery I had in 2003. Yes. 2003, as in the year after high school. Now, I expect the surgery in 2010. Seven, yes SEVEN years after my cranio-cervical fusion was done "inadequately." After seven years, I expect to finally have my revision done, and done right. Maybe even feel a little better and get back to LIVING my life, instead of watching life pass me by.

In the meantime, I have a new massage therapist who is great. As always, I need a massage on a daily basis (if not more), but I'll have to settle for every other week for now.

Also, I found out that my vitamin D levels are in the range of Toxicity. That means I'm taking too much vitamin D. I guess this proves the existence of "too much of a good thing." Vitamin D Toxicity causes the following symptoms:

-Poor appetite
-Heart rate abnormalities

Obviously, I wouldn't have noticed those symptoms. I have those all the time anyway.

So, we're decreasing, but not stopping my dose of vitamin D. I'll stop taking the extra daily vitamin D, however I will still get it in my Citracal every day. I will decrease my megadose of vitamin D to once every 2 weeks, instead of once a week. So, my level should gradually decrease. But I am not to decrease my calcium, or discontinue anything. I guess this happens when you only have bloodwork done every 6 months.

My pain management neurologist is trying me on some new meds. Axert and Topomax. He also did some nerve blocks over my eyes. Didn't help much. I'll write if the meds help. He's decided that I have Chronic Daily Migraine...basically I wake up with a migraine every morning. I have a migraine of varying degrees all day every day. I go to sleep with a migraine every night. And my migraine is there all night long, too! Constant Migraine. That's a nice name for it. Sounds like my life.

Whatever. I hate all of this patience. It makes me very angry to have to be so patient. I've had to go to the psychiatrist recently, because the amount of anger inside just swells up and becomes unbearable at times. I don't think patience actually exists. It's just being willing to hide your impatience. More than that, you are considered patient if you are in a situation that forces you to wait. When you are forced to wait, you seem patient. It's kind of like courage, I guess. If you are forced to endure difficult things, you seem courageous. But really, you're not patient or courageous. You are just in a difficult situation that drags on endlessly.

So many people simply do not understand invisible chronic illness and invisible chronic pain. (Chronic=Constant) When you try to seem happy and cheerful, but you are actually in constant pain and frustration, you have to explode every now and then. Being sick makes me seem like a crappy person. I seem to be careless toward others, a bad friend, and really, really lazy. When actually I'm doing the very best I can to be a good person and make others happy. I'm just really, really bad at it! I seem lazy, because I can't get my own meals; I can't wash myself daily; and I can't earn an income. Even though it sometimes appears that I would be capable of doing these things.

Whatever. My head and neck hurt. I'm gonna lie down and forget about the world. Don't care if it seems selfish. That's how much it hurts.

Monday, October 26, 2009


Because it is not the FDA approved use of the medicine, I cannot say which doctor I saw today. He/she would like his/her identity protected. I was told this was an exception that was made.

Anyway, the doctor I saw today said that my urine Calcium done last May was low, so I will up my Calcium dose. However, since there may be something else causing this (like EDS-related absorption problems), the doctor finally agreed to prescribe Forteo!!!!! Forteo is a daily injection that you do yourself. It is the only medication proven to regrow bone. I have been prescribed a 6 month course. (The usual is 2 years.) This doctor has agreed that after 4 months of treatment, my bones should be showing improvement. So my DEXA has been pushed back to February 22, 2010.

Is this a good thing? In general, YES. I've been waiting for this medication for so long. And now I have it. Problem: Why did I have to wait so freaking long to get it? Another problem: This means that surgery is at least postponed another couple of months. I can't expect to have surgery before March at this point.

The medication itself seems pretty easy. It's made into a Pen. The medication has to be refrigerated. The pen measure the dose for you. You just insert the needle in an area that has at least 1 inch of fat (which is, evidently, my entire body!), and inject the medicine. The needle is so tiny, you really don't feel it going in! I mean it! I was a little disappointed. You know how much I love needles and blood! (Seriously, I love needles. Not sarcasm.) I took my first dose this afternoon, and fell into a very deep sleep. So I will be taking it at bedtime from now on. Another common side effect is dizziness, but I haven't noticed that. Other symptoms to look out for are muscle cramps and growing pains in the bones. So far, I think it's a great sedative for nighttime. No real complaints as of yet.

I just really wish I could have gotten this prescribed sooner, so I could be scheduling surgery for immediately after the holiday season. At least now, I can be sure that my DEXA test results will definitely improve next time, so I will be approved for surgery in the spring.

My main concern: I was expecting surgery in early January, so I didn't feel so bad stopping work 2 months before then. However, if I have 5 months to wait until surgery, I cannot be completely without income during that time. But how do you tell your piano students that you would like to try teaching for a few more months? I don't want them to think I'm messing around. I just need to make my life as useful as I can.

This doctor finally agreed to prescribe this medication, because my condition is finally pathetic enough to warrant drastic treatment (haha, like this medication is so drastic!) The thing is, my condition has been steadily worsening for a long time now. All information told me that this would happen. Why do the doctors have to WAIT until you hit rock bottom? Why won't they take you seriously until your condition is truly desperate? And why does New York insist on me becoming essentially bedridden before they'll perform surgery? We know I need the surgery. I am prepared for the challenges of recovery. But they're making me wait and wait and wait before they will do it.

Perhaps, I will write to my nurse at The Chiari Institute, and inform her that I have started Forteo. I can also inform her of how desperate my situation is. Maybe there could be some kind of lenience.

For tonight, I have a migraine that is reaching an 8, 8.5, so I will try to go to sleep. Of course, I wish I could exercise so I wouldn't have such a high body fat percentage. I hate being too sick to exercise. It drives me crazy. I'm one of those weirdos that actually enjoys going to the gym. It makes me feel good. (Not during, but after...I do have POTS, after all=exercise intolerance.) But I do miss getting a good workout and being proud to be able to keep my body healthy that way. I burn very few calories laying around all day. But my body doesn't want to allow me to be upright at all. Ahh...approaching a 9 on the pain scale. I guess I'll try to sleep.

Sunday, October 25, 2009


Lots of pain. Very few coherent thoughts. So tired.

I hope to schedule the bone scan for some day this week, to keep things moving. I expect that the bone scan will reflect the improved blood numbers, by showing much denser bones. This will get me approved for surgery a.s.a.p. I'm feeling as optimistic as I can about this. I'll post as soon as I get results.

Saturday, October 24, 2009

The Higher You Fly, the Harder You Fall

If your body is telling you that you should stay in bed and do nothing, and you choose not to listen...If you take stimulants to make you seem awake and opioids to mask the will always, always pay. I've used stimulants and opioids to try to defy my body for too long. And the costs are too great. There is always a downfall. Always some level of withdrawal. And your body keeps track of what you stole from it. You will always pay for every minute of borrowed time. You will pay with pain, fatigue, and distress. I wonder if I will ever catch up, if I will ever make up for the time I stole. For so long, I've tricked my body into doing things it wasn't able to do. And now it has shut down. And it tortures me with pain and sickness. I don't know how I'll survive sometimes.

Get me to a freaking neurosurgeon. Cut me open. Rip out my titanium. Give me new rods. Make me new. I don't care what it takes. I don't care how much it hurts to get there. I can't live like this anymore. Just make this end. How will it ever end? I don't know how to go on like this.

Tuesday, October 20, 2009

Drop attack tonight. Fell on my left side on the hardwood. So far, I'm very comfortable in my decision to stop working. I would have called in sick every day this week.

Vertigo has been very bad. My temples feel quite swollen, as well. Full of pressure. I wonder if my pressure is up.

Post from last night

I wrote this last night, when I didn't have access to the internet:

I’ve been having quite a difficult time lately. However, I consider myself the luckiest girl in the world. This weekend, my boyfriend of 3 1/2 years and friend of 7 years became my fiance. Gustavo actually wants to be with me the rest of my life, in sickness and in health. Many of you know the kind of commitment that is with someone like me. I have been very blessed to be in love with my best friend. It makes all of this pain and sickness seem a bit more bearable, when you know you won’t have to do it all alone.
Of course, now that I have had to discontinue all of my work, I do spend a lot of time alone. Today, I officially quit teaching piano lessons, at least for a while. I have several very loyal families that are willing to wait for my health to improve. In the meantime, I am left spending much of the day alone in the house, because most people work all day. It’s amazing how much time there is to deal with when you can’t work at all. Most of that time is spent being tortured. My own body tortures me all day. My pain level has been very high. I’ve been very symptomatic, with my autonomic symptoms, nausea, and vertigo all worsening and happening more frequently. I’ve had a lot of pain in my head, including severe facial pain. I’ve also had pain in my spine, feeling like it’s being crushed like an accordion. I also have a constant feeling of a lump in my throat, causing frequent gagging. It's impossible to sit up at times. The only escape is laying flat almost all of the day.
I will be seeing my endocrinologist, on Monday, October 26th. I expect her to order a new DEXA bone scan to determine the effectiveness of my first year of osteopenia treatment. Hopefully, my bones will have improved sufficiently (with only Vitamin D, Calcium, and Magnesium treatment). I will send the results to Dr. Bolognese, my neurosurgeon in New York. I will also certainly be sending him a pleading letter, describing the worsening of my symptoms. The hope is that he will be willing to schedule a surgical revision to my cranio-cervical fusion in the very near future. I will probably have to wait a couple months, however, because my mom will be getting married at the end of November! And I don’t want to interfere with the wedding and honeymoon plans. My health (or lack thereof) tends to interfere with everything. But I’ll do my best to keep being patient. The situation is just becoming rather desperate. I sometimes wonder just how many more days I can stand this. It’s just been so long. I just don’t want to lose more years of my life to this. I need help, now.
I am frustrated that I can’t post this entry while typing it, because my current laptop has difficulty with wireless internet reception. So it doesn’t seem to work on the top level of the house, where my bedroom is. Being connected to the internet during the day would probably help me to feel less isolated alone on my bed 24 hours a day. I wish someone could help me (a lot of good wishing does).

Saturday, October 17, 2009

Symptom Categories

The ice-pick in the eye pain went away. YAY!!! So I haven't needed too much pain medicine today. However, my body was still very sick today.

I'm going to write a description of the different types of complaints I have:

If I say that I have pain:
-Pain in the head/eyes/temples/jaw
-Skin hurts to the touch
-Joint pain all over
-Muscle aches
-Aches in torso

If I say that I am sick:
-Like having the flu
-Achy all over

Low BP/Heart/Breathing/Oxygen
-I have low blood pressure, making me feel tired and weak
-Zoning out/brain fog
-Pounding heart
-Shortness of breath (oxygen is not being transported efficiently)

Torture headache
-Beyond my usual headache
-Pain level at 8-10
-Usually the feeling of ice picks over one or both eyes

Just so you know what I'm talking about.

Wednesday, October 14, 2009

Learning to accept even less from myself

Well, it's been difficult. (This won't be very articulate, because I'm in a brain fog, but need to write.)

I'm back to being almost completely bedbound. I just reached that point...the point where I just know I can't hold on any longer. Something needed to change just to ensure my survival. I had reached the point where I would smile for others, and then scream and sob as soon as I got to my car. I have reached the point where the time between lessons is no longer enough to get me through the lessons themselves. I'm very uncertain how much longer I will be able to work at all. I planned on going two more months, but I need to bow out early. I've canceled all piano lessons at the church. So no more daily drive to work. But even with lessons at the house, I don't think I'll be able to do this. It's simply a matter of acceptance. But it's also a challenge for those closest to me. To accept that I am falling back down. That I'm back to that place where I need to be taken care of. That's a challenge for anyone to accept, certainly a 25-year old woman that has had glimpses of independence and adult life.

So, the following symptoms are the reason that I am again restricted to bed about 23 hours a day:
Nausea, worsened to the point that I'm eating very little
Vertigo has returned, especially when I don't wear a collar or traction
Orthostatic intolerance: tachycardia and dizziness
Weakness: each limb seems to weigh an extra 20 lbs., more at times
Intense head pain: the ice picks over my eyes are back! And my temples seem to be permanently swollen
Cognitive deficits:
-brain fog (feeling really out of it)
-concentration/focus is a challenge
-difficulty talking or writing with any other sensory stimulation

These symptoms are only relieved by laying flat or with traction. Unfortunately, my traction options both have some pretty major flaws. (one blocks the hole in the back of my skull, squishes my ears, and hurts my jaw; the other pushes so hard into my rods that it creates a whole new kind of headache) Even the padding in my collar under the chin is thinned out so much that it's becoming uncomfortable. I use Kleenex for padding, but I think I need something more.

Anyway. As soon as I think I'm at a healthy level of acceptance of my limitations and my lifestyle, it gets worse. Then I have to learn to accept even less from myself.

Some people think that this is just one of the many ups and downs of my condition. That's partially true. But my good times are getting shorter and less positive. And my bad times are now unbearable, and lasting longer. So while I am still a study in oscillation, it is clear that my condition is still steadily deteriorating, overall.

I'm trying to accept this. Then, I'll be able to help others accept it.

Thursday, October 1, 2009

The Walk-still recovering

I am grateful to everyone that helped me in any way with the recent Conquer Chiari fundraising walk. At the 30 nation-wide sites, 3500 walkers participated, raising over $250,000. More information about funds raised is to come. Currently, my team has raised a confirmed $1445. However, I know that some donations haven't yet been accounted for. Whatever the final number ends up to be, I am so thankful to everyone that walked and donated.

Since the walk last Saturday, my body has had a flare of all symptoms, particularly those directly related to settling/dysautonomia. It's like every step I took in the walk made my head sink a little lower on my spine (at least that's how it feels). I've had a migraine for several days in a row in addition to a difficult instability headache. I've also had worsened nausea/pounding heart/breathing problems, all associated with cranial settling. The only thing that helps is traction. I've been using my Aspen Vista collar for cervical traction. It's not perfect, but it works as well as any home traction. Except for if I lay on the floor, and someone pulls my head away from my body...that is the ultimate symptom reliever. It's a great simulation of my hopes for a surgical outcome: relief of the headache, the overall sick feeling, and better breathing/heart functioning. I can't WAIT until surgery.

More than I really embody the adjective "courageous," I have been forced to practice the virtue of patience. Because I always seem to be waiting to feel better. Waiting for the doctors to think of a new treatment, to carry out that treatment. I wish I didn't have to be so darn patient!!!

Work is hard. My workdays are quite oppressive. I am definitely working as much as my body will allow. My days are as long as I can possibly stand them to be, often longer. I smile for those around me, but when I get in my car, I often scream just to release the pain and frustration. Then I go home and remain horizontal until the next time I have to work. Living this life is really like putting on a show. It's all an act! I guess I'm getting pretty good at it. I just wish I didn't have so much pain and sickness to hide.

I've been working hard to change two things about myself:
#1 I've finally switched to Skim (lactaid) milk, after a very long and gradual transition. It may not seem like a big deal, but it is to me.
#2 I've changed my sleep schedule. I took advantage of the calendar alarms in my phone to gradually wake up earlier and earlier, which makes me get tired earlier and earlier. It was a challenge, because tiring myself too much makes life impossible. But I'm proud to say that I usually fall asleep (without a bunch of sedatives) in the p.m. hours, and I wake up around 10 a.m. with no alarm. With an alarm, I can wake around 9:30. Any earlier, and it just doesn't seem to be worth it. But I'm very proud that I'm no longer up all hours of the night. I only need 50mg of Provigil, plus 30mg of caffeine, to get through the day. The extra stimulants were causing my insomnia (along with my episodes of hypomania).

In fact, it's almost 9:30 p.m., and I'm getting very sleepy. I may not need any sedatives or tranquilizers tonight. And I should have no problem waking up in the a.m. hours if I go to bed by 10 p.m.

That's all for today. Thank you to everyone for your ongoing support. I know that it's hard to remain interested and supportive when my challenges have been going on for so long. I also know that my problems are not the worst problems to have. I know that I am lucky to have so many people encouraging me. I just still have to find a way to force myself through each day. And that will can only come from inside.

Monday, September 28, 2009

Recovering from the Walk

I would love to write all about the walk, which was amazing! My team was amazing! It will take some time to get the final numbers. I'll post when I know.

I chose to walk for about 3K out of the 5K. After the walk, we went home. At 3:00 that afternoon, I fell uncontrollably into a deep sleep. Poor Gustavo tried to wake me up for dinner, but I was way out. I woke around 6:30 PM. I still went to sleep at 11:00 that night. The pain has been much increased since the Walk. Same with my POTS symptoms. Feverish at times. And I've just been feeling weak and tired overall.

Gustavo was correct in what he said that afternoon. He said that it's almost a shame that everyone sees me only when I'm at my best, or at least pretending to be. At the walk, I had a lot of adrenaline, and I wanted to make sure everyone enjoyed themselves. So I put on a pretty good show. Unfortunately, this means that people saw the best version of me; not really an accurate representation of living with Chiari. That came later.

Very few people see the pain and sickness I go through every day. The most they might see is a semi-conscious spell or a sleep attack. I really hide any other symptom from people. It's just the best way to maintain positive relationships, from my experience. If you don't hide your symptoms, then you are seen as a "downer," or even a negative person. You have to put that smile on your face.

The aftermath of an active morning:

Overwhelming fatigue. Exploding head. Pounding heart. Dry heaves of nausea. Overall pain. Can't make it up the stairs without resting. Intense, severe sweating spells throughout the night; then awakening with chills. Digestion at a halt. Light-headed. Cannot go without my collar for a moment. Did I mention my head is exploding?

This is how my body is reacting to over-doing it on Saturday morning. Nothing unexpected.

Bonus: my legs are not too sore. I think I've been walking a lot more lately. And the MBT shoes must really be helping to strengthen my legs. Otherwise, I'd be really sore by now.

Plus: I didn't faint at the walk. I'm sorry I had to walk so quickly, but I knew that if I walked at a slower pace, I would collapse or even pass out. I had to just keep moving.

Bedtime now. At least I'm having no trouble getting to sleep...except I need an ice pack on my head. It helps distract my nerves from the enormous amount of pain coming from my exploding brain.

Thank you to all.

There are more thank you's and more details to come, once I'm feeling stronger.

Friday, September 25, 2009

Chiari Walk Tomorrow!!!

I had another mystery virus this week. The fever was terrible, because it made all of my other symptoms unbearable. Thankfully, I seem to be getting better! :)

Just in time for the 2nd annual national Chiari fundraiser: Conquer Chiari's Walk Across America.

This will be my last shameless plug. I promise!

It is too late to register online for the walk. However, they will be accepting registrations at the walk sites, prior to the walk.

In Illinois, that means show up at the walk location in Busse Woods (Grove 5) at 8:30 AM to check-in or register tomorrow morning!

If you can't do that, it would mean so much to me if you could sponsor me. Every little bit counts!

I am so excited to have a team of 24 this year! It means so much to me. Our team name is Courageous Carolyn.

The definition for Courage is as follows:
the quality of mind or spirit that enables a person to face difficulty, danger, or pain, without fear.

I think that is really nice. However, I've changed it a little, to more accurately define how I see it:

Courage is being strong enough to act like it doesn’t hurt, smile through your struggles, pretend you’re not afraid, and keep living as much as you can, despite EVERYTHING!

I used to think that smiling when you’re in pain was being fake. But now I understand that it helps everyone cope with your illness better if you put on a brave face, when you are able. And it does take strength and courage to do so.

Now, I can embrace my team’s name, Courageous Carolyn.

See you all tomorrow at the walk!

Tuesday, September 15, 2009

TIRED BUT WIRED: The Energy Crisis

I've been saving up all of my ideas for posts for some time now, so look below to read all of the latest updates.

For today, I would just say that my constant state is that of being tired but wired. I have symptoms of narcolepsy a lot of the time. So I take medication for narcolepsy. It doesn't always work, so sometimes I take extra stimulants. Sometimes it works too well, so I need a depressant. But in general, I still feel tired, but wired. Not able to sleep (I've developed persistent insomnia). Not able to relax (I have frequent episodes of hypomania, with a need to get things done). But not really awake enough to be useful. I'm still so tired so much of the time. It may not seem like it, because that's how the medication works. If I'm talking, my brain switches on. If I'm listening, my brain switches off. So if I'm the one talking, I feel wide awake. But if I stop talking for some time, like when I drive, my mind tends to turn off, and I am prone to sudden sleep spells or constant yawning attacks.

Obviously, energy management is quite a science. I don't have it perfected yet, as I have chronic fatigue, and yet I seem to be awake until 3 a.m. every night, with the night hours being my most active, usually.

I've also developed an immunity to most sleep medications. Anything with Benedryl does nothing. Ambien does not make me sleep, however it does make me do strange things and then forget about them in the morning. But it doesn't help me sleep. On the other hand, I'm very sensitive to caffeine. I take a half of an excedrine (about 30 mg of caffeine), and it helps me stay awake for most of the day, when combined with 50 mg of Provigil. (Thankfully, Beverly from Dr. Grubb's office was able to help me get my Provigil re-approved, so I won't have to go without it!)

My whole personality is really affected by these drugs. I talk a lot...seriously, a lot. I zone out. I'm crabby. I'm giddy. I don't know if I'm asleep or awake. I feel that I am constantly almost asleep, except for the short bursts of energy I sometimes get.

But I'm still a really great actress. I'm sure most people I encounter on a daily basis are easily fooled by my peppy exterior.

In addition, being more active brings on significantly more pain. I'm to the point where I'm masking severe pain most of the day. So much so, that as soon as I am alone (like when I get in my car), I scream and yell to let out all of the pain that I've been holding inside. I sometimes need to yell or cry for several minutes, because of the amount of physical pain I've been hiding.

Then, there's the end of the day. At the end of the day, whoever is around to see me, usually my mom, is the unfortunate witness to the crash. I am in a horrible mood when I get home from work. I am always convinced that it has been the worst, most painful, most difficult day to get through, ever. So I always dread and fear the valid possibility that the next day will be even more painful and difficult. I'm in a pretty awful mood at the end of each day.

On the weekends, Gustavo is usually the one to witness the crash. I often sleep almost the entire weekend in Milwaukee. He has work to do, but I sleep. The laundry and dishes and cooking need to be done, but I sleep. I sleep, rest, and cry. I'm all used up by then. It's the end of the week. I've worked constantly, and hidden my pain all week. I've fought through the exhaustion all week. So, when I finally get to see Gustavo, when I should be able to enjoy myself, I usually crash. I just have nothing left to give at this point.

It's unfortunate, because I'm always in such a bad mood for the people I care about the most. It's just a side effect of "faking it" all day long, every day. The pain and fatigue and discouragement has to come out sometime. I'm so tired of living this way. And I wish I didn't have to be this way for my loved ones.

But no one can fake it all the time. There is always a crash. The downside always has to come out, eventually. And the more I do during the week, the happier I pretend to be, the harder the downfall.

So, no matter what medication combination is discovered to manage my energy just right, it is still very clear that this surgery is essential and urgent for my long-term well being. You can't fake your way through life. The body eventually gives out. I need this surgery in order to have a life. Until then, I will try to keep faking it. But, there is a point when you can't fake it anymore. I'll do my best to wait until surgery for that. You never know when it's coming. At some point, your body, and your will, just give out. I expect it to happen, and I understand that it will happen. When the time comes, I will know. I've been through it before, when I had to drop out of college. My body will make it clear that I need to stop working for a while and give my body all of the rest it needs. My current schedule can't continue forever. It's like running a marathon. It's an amazing act of strength and will. But eventually, you have nothing left to give. I'll hold out as long as I can. That's all I have to offer.

But if you see me, remember, I'm nearing the end of a very long marathon. I'm using everything I have just to keep going and to put a smile on my face for you.

I really hope this is close to the end. It would be nice to have the finish line in sight. I'm hoping that finish line is surgery in January. But then, we all know that this kind of surgery is really just the beginning of a new marathon, one of recovery! Maybe my time is getting nearer. The day when I won't have to force myself to smile. The day when I won't break down into tears over the severe physical pain I'm hiding. The day when it won't be so hard.

Courage is just knowing how to act like it doesn't hurt, smile through your sickest times, and pretend that you're not scared.

I can't wait for the day that I don't have to be so brave. But I will keep waiting, because apparently, patience is one of those virtues I'm supposed to really learn well.

Swallowing pills

I've been having more and more trouble swallowing pills. It requires me to recline back, arch my back, and drop my chin down and head back. Even then, I often fail. The pill slides back and forth between my throat and my esophagus. This is called dysphagia.

I found something that is very helpful, especially for larger pills with a rough surface. It's called Spray 'N Swallow. It's a pleasant tasting spray oil that you coat your pills with, which helps them go down easier. (I recommend the Wintergreen.) It may not be a miracle. I still have trouble sometimes. But less often, and less trouble. I still need to recline to get a good angle, but I don't need to arch my back so much. I still sometimes have the pill get stuck, but I've found that an extra spray right into my throat can help.

Just a thought, if anyone else is having trouble with dysphagia. I know after my next fusion, the swallowing is only expected to get worse.

Body image problems

So, I'm having some serious problems with my body image lately. Most of it has to do with being "skinny fat", as they call it these days. I'm still a slender person, but I have low muscle mass, and therefore, high body fat percentage. This makes me self-conscious about little bulges I never used to have. Also, having a high body fat percentage (as well as borderline cholesterol) is not healthy. I know I appear healthy. But by now, we must realize that looks can be deceiving when it comes to health.

I don't eat very much or very often, so simply reducing calories won't help me. I'm adding more fruits and vegetables to my diet. I'm also continuing to eliminate hydrogenated oils. (Gross)

It also doesn't help that I take very high doses of salt, which causes the body to retain fluid...which makes me "squishier" than I would be otherwise.

I also often bloat after meals due to poor digestion, exacerbating the problem further.

So, my pants don't always fit, and it makes me hate my body even more.

So, in addition to diet, I've tried to add some exercise to my routine, although it is quite difficult to do this with my busy teaching and traveling schedule, especially if I don't want to cause a setback.

Walking in the MBT's definitely adds muscle and helps me burn more calories when I do walk. Unfortunately, I don't walk all that much.

The other thing I do is some general core exercises to strengthen all the way around my core. I do things like planks, side plank raises, leg raises, flutter kicks, and bicycles. (These exercises can all be found here: I also try to do push-ups, but they are beginning to hurt my wrists. I ordered those push-up handles that rotate to help you do the "perfect push-up".

So, maybe all of this will make my pants fit a bit better. I hope so, because having such a hatred for my body and an increasing obsession with my imperfections is not healthy. I know- I shouldn't care about this. I should just worry about my health. But my health sucks. And even if it shouldn't matter to me, it does matter. I have very high expectations for myself, and it's very frustrating to be able to do so little to improve myself. But I know I'm doing my best, so that's all I can do.

MBT's, my new shoes

So, on the advice of a blogger friend, I bought myself of a pair of MBT's. MBT's are the anti-shoe. They produce an unstable walking surface, which strengthens muscles, challenges balance, improves posture, and absorbs impact. Basically, they do what they're supposed to do. You have to make sure to walk heel to toe to get the most out of them.

The best thing about them is that they activate the leg muscles, even when standing still, making me less likely to pass out, since my muscles are squeezing blood back up to my brain. Awesome!

They're quite pricey, so I recommend trying them on for fit at a local store, then buying them online at a clearance rate. I was able to purchase a discontinued style. It doesn't seem to bother me that my shoes are "so last season".

The MBT's should also be good for EDS, since they strengthen the small stabilizing muscles around the joints. I still can't spend a day on my feet without my futuro knee braces though.

The only thing is, these shoes are supposed to be the most comfortable shoes you'll ever wear. And maybe, if I could have bought the style I tried on, they would be. But I could only afford a discontinued style. And man, my feet really hurt at the end of the day. Maybe it's the style, or maybe it's just that I'm doing more standing and walking than I normally would, so my feet need to get used to it. Either way, foot pain is now a daily complaint for me. (By the way, the shoes feel great for the first hour I wear them. So it is likely just my feet adjusting to the extra use. The shoes are really not the problem.)

If you can't find MBT's, Skechers has come out with a line of shoes called "shape-ups" that are supposed to be very similar. They should be more widely available. But I haven't actually tried them to vouch for them.

New allergist

I saw a new allergist this week. My allergies have been contributing to my misery. My skin gets itchy and looks like it is covered in bug bites. Plus, my eyes and knows get so itchy that I just may rub them off one day. All that, and I'm already on Zyrtec, Optivar eyedrops, Astelin nosespray, and Benedryl as needed. I also use saline nose spray and a Neti Pot at times. Nothing's working...

So, I went back to the allergist, even though the last time I was there, they tested me for everything, and the only allergy I tested positive for was milk. And I am clearly allergic to dogs, cats, grass, trees, and other outdoor things. I saw a new allergist, and he's having me try some new things.

Dr. Handoyo is really great. I switched from Zyrted to Xyzal. I added a nasal steroid called Veramyst. And when things get really bad, I can try Atarax instead of Benedryl (since I'm immune to Benedryl these days). So, at least it's a plan.

He also ordered a blood test, to be sure there isn't any type of immune process going on. I just have to figure out when I can give up some of my blood, considering it makes me weak and faint to lose even one vial.

More doctor's appointments coming this week, including the pain doctor, the ladies' doctor, and the dermatologist. Fun, fun, fun!

Monday, September 14, 2009

New Pain Management Doctor/Neurologist

I've been meaning to post about this for quite a while. I've been seeing a new pain doctor for about 2 months now. I try not to a doctor's name if I have something negative to say, but I only have positive things to say about Dr. Wilkin.

I've had a strong aversion to neurologists ever since a bad experience at Children's Memorial (no need to mention a name here). But Dr. Wilkin is awesome. He is so well-informed and up to date. He actually understands all about Chiari, EDS, and POTS. I didn't know that was possible outside of the Long Island and Baltimore.

He's be trying to help me manage my pain and my fatigue. It's actually quite a saga, so I won't describe every step of the medication experiments. Just the basics:

Tried replacing Provigil with Nuvigil. It was too strong and caused me to have a very scary episode of clinical mania. I'm back to Provigil, and at lower doses.

However, Provigil alone seems to only keep my brain awake...not actually give my body the energy to do anything about it. So, I've added a low dose of caffeine (about 30 mg) to my daily regimen. I'm very sensitive to caffeine, so this actually does a lot for me. When I see Dr. Wilkin next, I will ask him if he wants me to continue on caffeine, or switch to a different stimulant. I think if the caffeine is helping, I should just stick with this. Everyone else is addicted to caffeine. Why not me? And any stimulant will make your heart race. I've already learned that.

The only problem with all of the stimulants is that I am staying up later and later at night. It's getting out of control, with my average bedtime being around 3 a.m. and wake-up at 1 p.m. I have developed an immunity to Ambien, so I'll have to see what Dr. Wilkin thinks I should to about my new insomnia.

Unfortunately for me, my insurance company no longer wants to prescribe me Provigil, because, while I have the clinical symptoms of Narcolepsy, it has not been confirmed by a sleep study. So, we'll have to keep battling to keep getting Provigil. I don't think I could function anymore without it. At least I'm taking a low dose now, so the pills I have should last me a while...hopefully until the insurance company is willing to help me out.

For pain, we first tried Percocet. Unfortunately, I had a bit of a stimulant effect from it. So it also made me manic, without providing enough pain relief.

Next, we tried Ultram. Ultram (generic: Tramadol) is a non-addictive, non-narcotic pain reliever for moderate to severe pain. It has NO side effects (for me), and it truly does help me overall. The only thing it doesn't help with is when my pain level is above an 8. That type of pain truly does need an opioid (narcotic). Maybe Norco, since it is just Vicodin with less Acetaminophen.

I also plan on asking Dr. Wilkin about Trigger Point Injections and Nerve Blocks for my head and neck pain. We'll see if he is up for some needles!

I'll be seeing him again on Wednesday. I'll try not to wait so long to post this time. I've been so manic, that I've suddenly had a lot to get done (bipolar joke...some of you know just what I mean).

Friday, September 11, 2009

IBS pain/bloating

So, getting my gallbladder removed truly made a huge difference in my life. The biggest one is that my chronic constipation is gone. The next is that my list of forbidden foods is significantly shorter.

Unfortunately, with POTS and EDS messing up my digestion, I still do have abdominal pain and bloating about half the days. My theory is that due to my dysphagia, I probably swallow a lot more air than I need to when I eat and drink. It makes sense, because I often inhale my food or water. This is another flaw of the same mechanism. I also strongly believe, after a year of food journaling, that for the most part, it doesn't matter what I eat! I already avoid foods high in fat. And I still follow some of my old rules about how to eat insoluble fiber safely.

If I liked tea, I know that fenell tea would help me greatly. Since I can't stand it, I do take fennel capsules (from a vitamin store) when the bloating is severe.

In addition, I always know that a heating pad can really help reduce the pain of intestinal spasms or bloating. And my gas pains can be quite severe.

So, I'm writing to say that I've found a couple additional methods of relieving abdominal bloating pain. They work for me, but I make no promises that they will work for you.

#1 Abdominal massage. You can google this to learn more about it. But really, it is what is sounds like. When you have trapped gas, it often feels like a very hard and tender spot in your abdomen. It really helps to relax your abdominal muscles and massage these spots. But there are specific ways to do it. There's a good demonstration video on YouTube:

#2 Yoga. Certain yoga positions are really, truly beneficial for bloating. They can be done right after meals, if you've eaten too much, or you feel the bloating coming on. They can also be done whenever else you feel bloating pain. The main poses that are helpful include bends, twists, and inversions. Here are a couple of links about yoga for digestion:
I really think these methods are helpful. They are just so logical. If you keep your abdomen sedentary, it will take a lot longer for the gas to dissipate. If you move your core around in different positions, you are bound to help things get moving in there. Even if you can't get rid of all of the gas or pain, there should be a noticeable improvement. If not, at least it was worth a try.

Hope this is helpful to someone. I know it has become of useful part of my daily routine. With medications, you often can't tell if they are helping or not. But these methods seem to show drastic improvements, almost immediately. These can also help you avoid needing to take extra medications for stomach upset (although sometimes, nothing beats MiraLax!)

*I am not a doctor. This is not a substitute for actual medical advice. Just some extra things you can try to make your life a bit easier. If they don't help, make sure to talk to your doctor!

Labor Day Weekend...ugh

The week before Labor Day was great. My energy was up, so I took advantage of it. In other words: I lived life. I didn't overdo it. Nonetheless, during the weekend, I paid dearly for my living. I was sick straight through til Wednesday, missing work on Tuesday.

My narcolepsy symptoms were the worst they've ever been...falling asleep mid-sentence while on multiple stimulants to keep me awake. It really does make driving a challenge. (Clearly, I do not drive unless my medications are working quite well. So don't worry about that part!)

I also had every other typical cranial settling symptom: arrhythmias, pounding heart, shortness of breath, migraines, fatigue, nausea, achiness, overall sick feeling, etc. This made getting out of bed impossible most of the time. Luckily, I was able to rest much of this time, and I'm getting back to my baseline levels today.

As a side note, my massage therapist is moving to Texas (Understandably, she can't stand the Chicago winters). So, I only have one massage left with her...then I have to see who they find to replace her. Ugh. A good massage therapist is so hard to find...especially with all of these rods and crazy tight muscle knots.

The first of tons of new posts: Chiari Walk

I have been building up a list of blog post topics for some time now. It's just taking me more time than usual to get them written and posted. So, I'll do my best to be efficient. Don't be surprised to see 5 or 10 posts all in one day.

The first thing I must post about is the chiari walk. The date of September 26th is readily approaching. I cannot express how humble and grateful I am that so many people have donated and even signed up to walk! What a wonderful surprise!

The important information is a change of time and location.

The walk is now taking place at Busse Woods (Grove 5). The entrance is on Higgins Rd., east of 53 and west of Arlington Heights Rd. The time has been pushed back to 9:30 (yay!), with an 8:30 registration time. All information about the walk, including the updated flyer and a map of Busse Woods is available here:

Other than that, it would be great to have even more sponsors and walkers. If you are interested, go to the link above. At the top of the page, you can click on "Register to Walk" or "Sponsor a Walker".

If you'd like my personal donation page, go to:

I am truly blessed to have so many people interested and participating in my fight to conquer Chiari, both personally, and in general.

If you have any questions at all, please contact me via email.


Saturday, August 29, 2009


Here is the latest edition of my medical overview:


Chiari Malformation: A skull malformation. My skull was formed too small, causing pressure in the back of my head, and a blockage of fluids that should flow freely in and out of the brain.

Ehlers Danlos Syndrome (EDS): A connective tissue disorder. My ligaments are looser than they should be, causing certain joints to easily dislocate. My veins and arteries are also lax, making it difficult for blood to be pumped the way it should. I also have associated heart valve defects.

POTS: An autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. This causes difficulty standing, due to my heart rate and blood pressure not reacting properly to the effects of gravity.

Tethered Cord Syndrome (TCS): A spinal cord malformation. My spinal cord is anchored in place, not allowing for it to move freely within the spinal column.

Cranial Settling: When EDS and Chiari join together, the skull-spine joint often becomes unstable. The skull begins to settle on the spine. This causes trouble swallowing, nausea, heartrate abnormalities, and other autonomic dysfunctions, including POTS.

Vitamin D Deficiency --> Hyperparathyroidism --> Osteopenia: Lack of vitamin D absorption causing excess PTH, reducing the amount of calcium in the bones, which results in low bone density.

Major Symptoms:

Headaches--I have a constant pressure headache. This pressure sometimes reaches a debilitating level. I also get migraines and more acute, sharp headaches. These are from Chiari and Cranial Settling.

Nausea--Nausea can be caused when there is increased pressure on a certain part of the brain. It is often worse when I am upright, and relieved when I lie down, but it never goes away. It is a symptom of Chiari and Settling

Neck and back pain--I have pain throughout my spine. This is caused by loose ligaments in the spine, allowing the vertebrae excessive movement, causing arthritis of the spinal joints.

Fatigue--I require a great deal of sleep. If I don't get enough sleep, my symptoms will worsen, leading me to return to bed and get more sleep. I also sometimes fall asleep at inappropriate times or have insomnia at night.

Tachycardia/Low blood pressure/fainting--After standing for too long, my heart races and my blood pressure drops. Sometimes for no reason at all, my blood pressure gets very low, and I can fall into a state of reduced consciousness. I get short of breath very easily. These are the main symptoms of POTS.

Heavy head--Due to the settling, I have difficulty holding my head up. This is very tiring and leads to severe muscle spasms in my neck from trying to support my head. All of my symptoms get worse if I don’t wear a collar to keep my head from settling too much.
Joint pain--I have pain in all my joints, especially my knees and hips. This is sometimes severe enough to prevent me from walking. It is caused by EDS. It is gradually causing early osteo-arthritis in all of my joints.

Flu-like symptoms--I have have low-grade fevers, cold sweats, and overall body aching, very similar to the flu.

Vertigo and Balance problems


I take medication to constrict my veins, in an attempt to help my blood flow improve and raise my blood pressure. I also take salt pills regularly to force my body to retain more fluid, which can help keep my blood pressure up. Salt pills are also the only thing that helps when my level of consciousness lowers. I drink a LOT of water.

I have medications that help me stay awake during the day. They usually work, but they sometimes make me a little too talkative and hyper.

I am very cautious about taking pain medications. I treat pain with ice packs, heating pads, and rest, when possible. Any pain medications I take a carefully monitored by my pain management doctor, whom I see regularly.

I've already had several major operations, but obviously, I'm not better yet.

In July 2002, at the age of 18, I had a posterior fossa decompression surgery. This involved removing part of the base of my skull and the back of my C-2 vertebra. I felt much better at first, but started to get worse again after a couple months.
When my symptoms continued to worsen, I began to search online for more answers. I sent my MRI’s to the doctors at The Chiari Institute in New York. They found that I had cranial settling, caused by cranio-cervical instability.

In December 2003, the day after my 20th birthday, I had a cranio-cervical fusion in New York. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This fused my skull in place atop my spine.

After that surgery, I worked very hard to recover. I struggled to keep living my life, but my symptoms persisted. This led me to have another set of MRI's. I sent these to my doctors at The Chiari Institute in New York. It was confirmed that I had an occult tethered spinal cord. This is a hidden form of Spina Bifida that isn’t found until later in life. It was also found that I have an inadequate fusion.

In June 2008, I had my filum terminale clipped to de-tether my spinal cord. This released the tension in my spinal cord. Mild lower-body symptoms, such as leg pain, low back pain, and bladder control improved. These symptoms probably would have progressed without this operation.

I still require a revision to my current cranio-cervical fusion. This will reset the position of my head, allowing for greater stability. This surgery cannot be scheduled until my bone density has improved. My bone density scan will be done in November 2009. If my bones are stronger, I will be approved for surgery, to be done early in 2010.


Currently, I sleep about 12 hours a night. I have medication that helps me stay awake the rest of the time, usually. This is a great improvement over a few years ago.

I still need to spend most of the rest of my time resting, either in bed or on the couch. About 4 hours a day, I am able to be somewhat active, most days.

I use a wheelchair or a walker for assistance at times. I also wear a rigid cervical collar at all times. These things make it easier to get by.

I am in pain all of the time, but I have learned to live with it. I am expecting my next (and last) surgery to decrease my overall pain and increase my level of functioning, so that my life is slightly more livable.

Thursday, August 13, 2009

More thoughts on today

I think the reason I'm so upset today is that I am certainly having a sick day, I'm noticing the downward pattern in my health, I am worrying about my ability to keep pushing through...and I don't feel that I'm allowed to be feeling this way!

The ones that love me do have other things going right now. But I don't know where and when is appropriate to discuss all of these feelings, and more importantly, have these feelings validated.

I have serious fears about my ability to continue working, to continue commuting back and forth to Milwaukee, and to handle the severity of my symptoms.

I have been sicker than this before, but then, I was bedridden. There was no pressure on me to do anything. This time, there's tons of pressure. I need to keep doing everything.

And the constant struggle to do what is needed, despite horrible pain and serious worries, is turning me into a witch. I'm not the person I want to be. I don't know how to keep being nice when I'm struggling just to exist. Even just laying down is a struggle. The guilt is immense. Guilt that I'm not doing what's expected of me. Guilt that I am making other people's lives so much harder. And guilt for being so mean and irritable.

I also have serious concerns about if my bones will be ready in time for my December DEXA scan. I haven't had any actual medication for it, just supplementation. And people with EDS do NOT absorb the way we should. But my doctor wouldn't prescribe an actual medication to help rebuild bone. How do you think my bones got like this in the first place? I don't absorb properly!!! Adding more won't make me any better at absorbing! So it's quite likely that this year long wait will be pointless. The bones have to get better, or I can't have this surgery. And I've already waited so long. It's unfathomable that I may have to wait even longer.

I am overwhelmed by all of this. I can't stand this existence. I just can't handle all of this.

So that is what is upsetting me. I suck at this life. I need it to change. But I don't think anything can change for a while. Who knows how long? It's an endless wait.

I know, I just have to do my best. And not every day will suck this much. But for today, it just seems like more than I can handle.

I just wish it could be different. I wish I could be different. I wish it didn't have to be this way. I want to be better for everyone I love. I really hope that one day I will be.

Wednesday, August 12, 2009


I had a new post written. But it was very raw and dark. The point of it is that my body is deteriorating, and the failings of my body are depressing. Sorry if these posts are ever too much. These are simply the truth behind the smiles. But I've re-written the post to make it a little easier to handle.

I have a new pain doctor. Dr. Wilkin is great, but I'm having a hard time with the insurance company approving medications. Ugh. Hope this gets worked out soon. I'm in so much pain. I have another appointment next week, and I hope to try something different and get the new medication approved.

I need help. I need to find a way to get through until surgery, which is at least 5 months. I have many new and worsening symptoms. But most importantly, I need adequate medication for my energy and my pain to help me get through until then. But my determination that I need this surgery has never been stronger. I just hope that once my bone density levels are improved, there is no further delay. I hope that things are settled at The Chiari Institute and I can get surgery scheduled early in the new year.

I need to stop burdening those around be the person I should be and live the life I should be a positive force in the world. I want to have this surgery so that one day, it will be worth all the trouble. Worth the trouble we've already been through, and all of the trouble that is ahead. It is such a huge burden to ask someone to help me bear. How can I ask someone to take care of me, to spend time with me, to watch so much more suffering? Only if they too have the hope that one day, it really will be worth their while. This is the only hope I have to offer, to hold on to. That after recovery from this surgery, I'll feel well enough for it to be worth everyone's trouble.

Wednesday, July 22, 2009

ASAP Conference 2009

The ASAP Syringomyelia and Chiari Conference took place in Madison, WI this year. I only went to one day of the conference, so I can only report on that part. I've been recovering from it since Friday night, and I've been trying to find the strength to type up all of my notes. (I took excellent notes. It was a lot like being in college. And I was a really good note-taker in college!) I will include a comprehensive overview here. (My thoughts may be inserted at times, but I will separate them from the facts presented.)

I attended the conference on Friday, July 17. We were very lucky to be able to go, even for one day, this year. My mom, Gus, and our friend, Susan, all went together. We were only able to go due to the generosity of my Uncle Greg and Aunt Corinne, who have a home near Madison. It was so nice to be able to visit with them on Thursday and stay at their place that night. We are so blessed to have such wonderful family!

So, we had an early start on Friday, because the conference day started at 8:00. Thanks to Provigil, I was able to stay awake all day.

The first speaker was Dr. Bermans Iskandar, from the University of Wisconsin-Madison. He was the host of the conference and did an excellent job. He had a dry sense of humor, and seemed very friendly and smart. He introduced the topic of Module 3: Complex and Controversial Problems.

-The older the patient, the smaller the tonsillar herniation. Children will have exaggerated hernations, but that decreases with age. So older patients may have much less obvious herniations.

-Chiari malformations come from many different causes. Is it really one disease? Is there really one treatment that treats all? A thorough understanding of the pathophysiology is needed for proper treatment. A Chiari caused by a volumetrically small posterior fossa will be improved with decompression surgery. A Chiari caused by cranio-cervical instability will be improved with a cranio-cervical extraction fusion. Treatment is not "one-size fits all".

-Sometimes increased intra-cranial pressure causes Chiari; sometimes Chiari seems to cause increased intra-cranial pressure.

-Imaging: Simple MRI's give a very limited picture. Even CINE MRI's, which are the gold-standard for imaging Chiari's, provide inconsistent radiology findings.

>Thoughts: Throughout his speech, Dr. Iskandar inserted advertisements for tourist spots in and around Madison. He did it all with a straight face, too. Quite charming!

The next subject was Occult Spinal Dysraphism and the Tethered Cord Syndrome, presented by Dr. Jerry Oakes. He presented a quite strong stance against the current trend in treating Occult Tight Filum Terminale. I will present the information as fact, just as he presented it. This doesn't make it so.

-Occult Dysraphism is another name for a primary tethered cord.

-Anatomy: In vitro, the spine grows faster than the cord. Therefore, the cord ascends. The cord normally ends at the L1 vertebra or between L1 and L2. The nerves connected to S1-S5 are responsible for bowel, bladder, and sexual function. Therefore, all symptoms of tethered cord are related to bowel bladder, and sexual function. Because of normal variations in anatomy, 3.8% of normal patients will have termination of the cord at L2-3.

-Signs of primary tethered cord in children (when it's usually identified):
---Skin abnormalities at the location of the tethering. 60%
---Bladder disturbances. 20%
---Weakness of legs. 10%
---Deformities of bones in feet, hips, or spine. 5%
---Pain. 5%

-Adults frequently have pain.

-To diagnose tethered cord, an MRI of the lumbar spine is done. The following findings require surgery:
---If the conus (base of spinal cord) is below the L1-2 space and there are symptoms, the filum should be sectioned.
---If the conus is below the L1-2 space and there are accompanying changes, such as a fatty filum, bony deformities, skin abnormalities, or a terminal syrinx, the filum should be sectioned.
---If the conus is above the L1-2 space and there are symptoms AND accompanying changes, the filum should be sectioned.

*Since a section of the filum terminale surgery carries very little risk, the temptation is to abuse and overuse the operation. (This statement strongly implies that recent developments in treating tethered cord are unnecessary and irresponsible. He was ready for a fight.)

>So, that speech was a lot to hear. The room was quite silent. Dr. Oakes had spoken quite assertively.

Next, Dr. Arnold Menezes, from the University of Iowa, spoke about "Complex Chiari: To fuse or not to fuse".
>So exciting! I hope he wants to fuse me!!!

-Cranio-cervical junction fusions are only recommended for a small percentage of Chiari patients. Fusions leave the patient with a limited range of motion, and they carry a high risk for complications and ongoing problems.

-Cranio-cervical fusions are only indicated in 4 cases:
---A reducible bony abnormality, such as a retroflexed odontoid leading to basilar invagination. 25%
---A previous decompression surgery done from the front. 44%
---Occipital-Cervical instability. 26%
-----This is when there is a significant difference in the size of the tonsillar hernation between flexion and extension.
---Musculo-skeletal abnormality, such as EDS or Marfan's syndrome. 15%

-Symptoms of cranio-cervical instability are postural:
---Occipital headache
---No headache in the morning
---Worsened while upright and with exertion
---Dizziness and nausea when upright
---Feeling of impending crisis with exertion
---Relieved with head support and horizontal rest


---A properly-fitted brace is both diagnostic and therapeutic. If the brace relieves symptoms, this is diagnostic of instability.

---Types of fusions: Instrumented (Can be either rigid, with plates, screws and rods, or semi-rigid, with loops and cables.) Non-instrumented (Use of patients own bone to fuse.)

*Every fusion surgery requires bone placement for a successful bony fusion. Bone must fuse with bone ultimately. A brace needs to be worn for 3 months post-surgically to ensure a solid bone-to-bone fusion. Bone to metal fusions are not adequate. Either the bone will give out or the metal will.

---A good fusion should use limited instrumentation to preserve as much range of motion as possible. Usually, the skull needs to be fused to C2.

*Reiteration: There must be bone placement into the fusion for a successful osseous fusion.

>It was great to hear Dr. Menezes speak so assuredly about fusions. I even got to talk to him during the break, and he was so friendly! He looked at my nametag. Maybe he'll remember my name and decide to take my case. I would feel confident with my head in his hands.

Next, Dr. James McCarthy from U of W-Madison spoke about Scoliosis and how it relates to Syringomyelia. I'll include some abbreviated notes on this section, as it wasn't one of the most important sections.

-When Scoliosis is present with Syringomyelia, which includes 60% of SM patients, the syringomyelia should be treated first, as it often resolves the scoliosis.

-An exception is when the Scoliosis is larger than a 70 degree curve. This needs to be treated with a full spinal fusion.

Next came a question and answer session.
>Each of these sessions were quite painful to get through, since so many people presented their personal problems to the panel, which was explicitly not allowed.

The panel included the previous speakers and Dr. Kula, the neurologist at The Chiari Institute.
>There was a very definite clash between Dr. Menezes and Dr. Kula. It was quite tense at times.

-The first question (my question that was submitted online before the conference) was: What can be done to prevent the need for a fusion revision due to a sub-optimal cranio-cervical fusion?

Menezes: For a fusion to be optimal, bone should be used in the fusion, not just metal. It also should only be performed when indicated.

Kula: Fusions often fail due to a lack of adequate bony material in the area of C1 and C2. Osteoporosis and Vitamin D deficiency should be treated to ensure a bony fusion

-Question: Why are so many neurologists unaware of Chiari malformations?

Kula: There are often minimal neurological findings in patients with Chiari. Besides a downbeat nystagmus, which may or may not be present, the neurological exam is often perfectly normal. For this reason, neurologists don't see the need for treatment unless they are very well-informed.

Next, there was a break. After the break, we began module 4: pain.
>This section was not very helpful to me. I will only mention the few points that were made.

The first speaker was Dr. Miroslav Backonja, from the U of W-Madison pain clinic.

-In Syringomyelia, the pain is often neuropathic.

-Neuropathic pain is caused by diseases affecting the somato-sensory system (injury or lesions of the nerves).

-Hyperalgesia=an increased pain response to normal stimulus.

-Hyperpathia=an increased pain response to repeated stimuli.

-Most people have descending modulation, which makes it possible to ignore pain. People with chronic pain tend to have a loss of pain inhibition.

-A multi-modal and multi-disciplinary pain management clinic will approach both problems: Medications will be prescribed to decrease hyperexcitability of the nervous system, including hyperalgesia and hyperpathia. Cognitive-behavioral therapy will be used to help with pain modulation and develop coping skills.

>I'm not even going to include information from the next speaker, Dr. Angela Mailis-Gagnon, because I found her to be so unhelpful.

Next was the question and answer session on pain. The first question was about chronic opioid use.

-First, Dr. Backonja clarified that opioids are legally prescribed medications, and narcotics are illegally sold and taken drugs.

-Moderate use of opioids is often necessary in treating moderate to severe chronic pain. As long as the use is controlled and in moderate doses, it's generally safe.

-Unfortunately, some people are not helped with narcotics. Some people experience severe side effects. These people won't be able to tolerate narcotics.

Question: How to deal with persisting headache after decompression.

-The Alexander techniques for cervical alignment can alleviate headaches. Improving posture through physical therapy and lifestyle adaptations can help.

-Being in pain heightens the sensitivity of pain. It lowers the pain threshold and heightens pain awareness.

Next was the lunch break.

>I was very fortunate to be able to eat lunch with Laurie, a fellow Chiarian and blogger. It was great to meet her. I'll include a picture when I get around to loading it onto my computer.

Next was module 5: Clinical Research.

First, Dr. Paolo Bolognese presented on Intra-operative Ultrasound Techniques.

-Color Doppler Ultrasound is used intra-operatively in every operation done at The Chiari Institute, but nowhere else.

-Most decompression operations are done with only a B scan real time ultrasound. Color Doppler Ultrasound has three parts: B scan real time ultrasound, color coding, and pulse waved doppler. The pulse waved doppler measures the velocity and the flow of fluid.

-This technique was actually invented by Dr. Bolognese, and described its use in a paper published in 2003. Pulse waved doppler was originally used in cardio-vascular surgery, to measure the flow of blood through veins and arteries. Dr. B decided to try this to get a more accurate view of the flow of cerebro-spinal fluid flow intra-operatively.

>He showed pictures for comparison throughout the presentation. The differences were quite impressive.

-Color Doppler Ultrasound is used in every operation at The Chiari Institute, but nowhere else. This is because it is very, very expensive, difficult to use, and operator dependent. It requires a particular expertise.

*Using a B scan, you can only make assumptions about the flow. CDU is the only way to actually measure the flow.

>Here, Dr. B mentioned what a funny word "assume" is in the English language. hehe

-A B scan can show brisk movement of the structures, even if the flow is not really going anywhere, just back and forth. This kind of flow is called "stump flow".

-With CDU, you can measure the CSF flow before decompression, then make sure that the flow is improved after decompression by tailoring the operative technique to the individual.

-Even a CINE MRI, which is the gold standard for measuring CSF flow, is often inaccurate. Measurements of flow with CINE are affected by cardiac and respiratory variations. Everything that is not in sync with the heartbeat is lost.

-The only other doctor that has mastered the use of CDU and uses it regularly is Dr. Lu, in China.

-At TCI, they have been able to establish that in cases of Occult Tight Filum Terminale, the tension in the cord creates stagnant flow within the filum. This has been demonstrated using CDU in each operation.

>This was great for me to hear. It really validates the existence of OTFT, and the need to detether in these patients, despite what other doctors may say.

-So, CDU allows for much more insight into CSF dynamics. However, it is difficult to master and expensive to use. It provides anatomical and functional feedback throughout the operation, allowing for a personally tailored decompressive operation based on individual anatomy.

>We all know that each Chiari malformation is unique. This demonstrates how TCI is able to tailor the operation for the individual. They use more aggressive tonsillar shrinking often, because it makes more pathways for CSF flow. They determine whether or not to open the dura during this operation.

>In the last couple minutes, Dr. B honored Dr. Milhorat. He said that he was an incredible mentor and friend, and he was very sad to be operating without him. He looked so sad. It was very sweet. I was in tears. They were clearly very close. It's a shame that Dr. Milhorat couldn't be at the conference, because of recent controversy.

>I think Dr. B did a great job presenting on the topic. He was also quite the comedian. It was good to see him keeping his sense of humor. Unfortunately, he came in soon before his presentation and left soon after. I heard it was because his kids were alone in the hotel room at the time.

Next, Dr. Nicholas Wetjen spoke about outcomes after decompression for Syringomyelia. I don't really have anything to report on this section.

Dr. Frim, from the University of Chicago Hospital, spoke next. He discussed neuropsychological issues in Chiari and Syringomyelia patients.

-The most common neuropsychological problems in childhood are brain fog, school problems, and ADHD.

-Most Chiari 1 patients are broadly average both cognitively and emotionally. However, they tend to have specific deficits. these deficits include memory retrieval deficiency, low processing speed, reduced executive functioning, and mild cognitive impairment (memory type). The lowest scores overall were in verbal memory.

-This classifies most Chiari patients as learning desabled.

-Further study should be done to find out if decompression surgery helps with cognitive functioning. Dr. Frim is performing a study like this right now, testing neuropsychological functioning both pre-operatively and post-operatively.

-Cognitive rehabilitation could be done to help with Chiari-specific cognitive weaknesses.

Next, Dr. Brandon Rocque spoke about trends in surgeries. This was a pretty basic presentation discussing the differences in decompression surgeries.

The next speaker was Dr. Allison Ashley-Koch. She works at Duke, studying the genetics of Chiari. Her work is a continuation of the work of Dr. Marcy Speers, who passed away in 2007.

-There are multiple causes of Chiari, that may all have different genetic causes:

---Push down: Hydrocephalus
---Suck down: CSF leak causing hypotension
---Squeeze down: Reduced volume of the posterior fossa
---Shake down: Trauma causing acquired Chiari
---Pull down: Tethered cord

>The rest of her speech just said that there are some possible leads, but they haven't really figured anything out yet.

The next speech was on canine Chiari and Syringomyelia. Small breeds, especially but not exclusively the Cavalier King Charles Spaniel, are most susceptible.

Lastly, there was the final question and answer session.

-The only valid question was about the long-term prognosis for Chiari patients post-decompression.

Frim: We don't know, because it's still a fairly new surgery. We can only compare to similar surgeries that have more long-term evidence. For example, patients with tethered cord that are successfully de-tethered have early deterioration of spinal cord function. And patients with shunts have early cognitive problems that are usually associated with old-age. All of these patients have a more "condensed" life-span. We don't know if Chiari patients will have similar experiences.

>And we'll end with a joke. One panelist was explaining that there are many roads to Chiari. Dr. Frim mumbled, "There's construction on all of them."

Sorry it took me so long to post this. I've had a bit of a rough time since then, which I'll post about soon.