Saturday, May 30, 2009

Yay for Prednisone

I never thought I'd say it, but the steroid seems to be helping, at least a little bit. And I haven't had any of the weird mood side effects I used to get. I'm still glad it's only a three-day course.

The Zithromax normally works quickly, and it was having no effect, so it probably isn't a bacteria, but a virus...not an influenza virus, but a mystery virus.

I still have a fever today, and my cough got significantly worse again last night and this morning. I've also had complete nasal congestion, with no air going through my nostrils. Luckily, Afrin nasal spray helps clear that up and get rid of the sinus headache. But you can only use it for three days, so hopefully I'll only have one more day of sinus headaches.

My body just doesn't react well to being sick. But I feel like I am just slightly getting better, like I'm on the upswing. Hopefully, I'm right. I'm still stuck in bed today, but the body aches are much less. That's the best part. I've slept a little less today, but still needed rest. My cough is still horrible. It sounds like it's deeper now, but at least it's more productive. I've gone through so much water today, so my body must be trying to flush my system. It helps that my throat isn't so sore today.

Thanks for checking in. I hope to be ready to go back to work on Monday. So much for a week off.

Friday, May 29, 2009

Getting worse, not better

The flu swab came back negative, but since I have been continuing to get worse, the doctor prescribed a 3-day course of Prednisone. I was hesitant to take it, so I didn't start it yesterday. But when I woke up with an even higher fever today, and every day getting worse, I decided to start the Prednisone. It's known to have bad side effects, particularly for me, but I'm desperate.

I slept almost all day today. I thought I was feeling a bit better after my last nap, but my fever is back along with most of my symptoms. The only thing that is a little better is the body aches, but the fever is worse than ever. Ugh. And it's Friday night, so I have to start feeling better. I won't be able to see a doctor all weekend. It's definitely time to start getting better.

Thursday, May 28, 2009


I am very sick. It was just a cough until Monday afternoon, when the fever and all-over body aches came on. It became painful to move or be touched in any way. By Tuesday night, I could barely breathe, I was coughing so much. The cough is a very deep, "croupy" cough. Wednesday, I went to see my doctor. He agreed that I have the flu. He prescribed an antibiotic and Tessalon pearls for cough. He also did a nose swab to test for Influenza A. If it comes back positive, he will prescribe Relenza to treat the flu.

Dr. Shah said that he has seen a lot of swine (H1N1) flu cases recently, and that it seems likely that I have it. However, the only way to confirm H1N1 flu is to be hospitalized, and wait in isolation while the test is sent to the CDC. This option was not offered to me, as it is unnecessary. H1N1 is a strain of Influenza A, and it can be treated with Tamiflu or Relenza. However, Dr. Shah uses Relenza, because it also treats B strains of the virus.

So, for today, I am waiting for my flu test result, to find out if I need Relenza. Apparently, it is an inhaler, so it won't cause digestive distress (yay!). Many people will never know if they had the so-called swine flu, because it isn't tested for most of the time. It's also only treated if it is a severe case, or if the person is at-risk for any reason. That is why I would need treatment if I the test comes back positive. My system is weak and not good at fighting off viruses. I'm continuing to get worse at this point.

My worst symptoms today are fever, cough, fatigue, body aches, and weakness. The cough has caused deep chest pain and a very sore throat. Dr. Shah said that my throat is really irritated (and that was after only one day of coughing). I also have a few sores in my mouth and throat. I'm not sure if these are related or not. All of this coughing has made my headache a lot worse, too. The assault on my body is also making my autonomic system act up: tachycardia, loss of balance, and vertigo. I'm stuck in bed, and no one is allowed to touch me, as it hurts so much to move.

I'm pretty miserable, but I understand that this will pass soon enough.

Tuesday, May 26, 2009

Support Group/Updates

There is a flu that has been going around my family. First my younger brother, then my boyfriend, now me. So, I've got a sore throat, annoying cough, and some extra body aches. The cough is the worst, because it increases my headache a lot.

Also, I've decided to have another support group meeting in June. The exciting news? I've found a few new forms of publicity for the group. One is a website called Meetup, which I paid to join for one month only, in order to contact the six people listed that are interested in Chiari Support. Next, I contacted Conquer Chiari so that our group can be added to their new Local Support Page. Last, I was contacted by the CEO of ASAP (American Syringomyelia and Chiari Alliance Project)! Really! He asked if he could list the group, and if there was anything he could do to help. He even said he would like to see me the next time he's in the Chicago area.

So, that's all good news. Hopefully, our little group will grow.

Next, I am planning on going to the American Syringomyelia and Chiari Alliance Project National Conference in July this year, which will be held in Madison, WI. I haven't bought tickets yet, but the plan is in the works.

Last, I finally ordered a walker. I ordered an Invacare Rollite Rolling Walker. It should be delivered sometime this week. I think that will help with my ability to move around, especially since it has a built-in seat to rest on. I think it should be really helpful. It will give me an alternative to my wheelchair.


The following are the medicines I take daily:
*Midodrine--this medicine is a vasocontrictor, it helps your veins to constrict, thus raising dangerously low blood pressure
*Seasonique--low dose birth control pill, 13 week cycle, reduces the frequency of migraines
*Nexium--to treat Gastric-Esophageal Reflux Disease
*Zyrtec--to help with severe allergies to everything
*Thermotabs--salt tablets that increase fluid absorption, raising blood pressure
*Provigil--to prevent daytime sleeping due to Narcolepsy. If I don't take this medicine, I am not allowed to drive.
*Lithium--a kind of salt. I was frequently suicidal for 10 years until I began this medicine. I haven't been suicidal since.

*Vitamin D
*Vitamin C

Please notice that none of these daily medications treat pain.

I use the following methods to treat pain:
*Sleep at least 10 hours every night.
*Rest in bed 90% of the time.
*Ice packs for certain headaches.
*Heating pads for muscle relaxation or intestinal cramps.
*Peppermint oil capsules for intestinal cramps.

Notice that this involves dramatic lifestyle changes. I am unable to live a normal life. I work 2 hours a day, 4 days a week, when possible. I very rarely socialize.

If none of these work for my pain, I then resort to a medication.
*Vicodin--I take half of the lowest adult dose.
*Darvocet--I take half of the lowest adult dose.

I used to take daily meds, but a doctor was concerned that I was having rebound headaches. So I discontinued my daily Advil and Tylenol. Nothing changed.

So, I know that it seems scary to take a lot of medication. But I am being closely monitored by my doctors and myself. It is the way that I cope with multiple chronic illnesses and endless pain. Please don't fault me for needing to resort to prescription pain medication at times. I am doing my best to survive. However, don't be concerned that I have any kind of addiction. I average taking one dose of a narcotic per week. I also have my liver enzymes checked by my primary care doctor, to be sure that I am not causing any damage.

Monday, May 25, 2009

So sick today. Can't get off the couch. Need help just to get to the bathroom. But everyone's out and enjoying the day. I'm just stuck here. Yes, I'm sad and in pain and almost completely incapacitated. No, I don't need sympathy or pity. I'm having enough of a pity party on my own, for today. I need surgery so badly. My body is failing. I really need to be fixed. This is not fair.

And please don't tell me to cheer up. That doesn't actually help anything. Sometimes you can just let someone recognize the unfairness of their situation and feel justifiably sad and angry about it. Sometimes, that's the best thing a real friend can do.

Sunday, May 24, 2009

New/Worsening Symptoms

I'd like to apologize in advance. I am extraordinarily tired, but I will try my best to write coherently.

Yesterday, Gus and I went to his cousin's wedding, an hour and a half away. It was quite a challenging day for me, and really showed the new symptoms I'm developing. I used my wheelchair and my Aspen collar the whole day to try to help me last as long as possible.

First, I took my pills in the morning, as I always do. Unfortunately, as has been happening lately, I had a lot of trouble getting them down. Already, I have to arch my back, pull my head back, and lower my chin to my chest to get big pills down. (I don't take any huge horse pills.) Even while doing all of these things, I have been having trouble swallowing pills. Sometimes, they come back up, sometimes they kind of go back and forth, and now, sometimes I actually gag and vomit several pills back up. I drink copious amounts of water in between pills. It seems that now, I have to add a little bit of food in between to encourage the pills to go down, in addition to the large amounts of water I drink.

Next, at the wedding ceremony itself, I had one of my new "sleeping" spells. I became extraordinarily tired, and basically fell asleep. The only difference, I could still hear what people were saying. I just didn't have the ability to react. Gus discovered a neat little trick. He guessed that I could hear them talking about me, and asked me to move a finger if he was correct. I didn't know if I could, but he was right. I could move a finger! So, we've developed a new way of dealing with this, which is choosing one finger to mean yes and another to mean no. This way, I can still communicate a little while I'm "sleeping". The only question is, how to deal with these spells. Salt pills don't seem to be the answer anymore. Yesterday, I think the Provigil helped, followed by a lot of water to get the Provigil working sooner.

After the Provigil kicked in, I started trying to wake myself up by squeezing my hands and feet, trying to pump the blood back to my brain. The best thing was when Gus squeezed my legs, which were not circulating much blood, based on how cold they were. He just kept squeezing them, pretty forcefully. I had decreased sensation in my legs. He thought he was hurting me, but I could barely even feel it. After a couple minutes, this really seemed to help send the blood back to my brain. I know that there are support hose for this, but in the heat, I promise that overheating causes just as much stress.

After the ceremony, we were the last ones to leave. We made it out to the car, where I was able to rest in the back seat for a bit. Then, we went with Gus' sisters and nephew to Subway, where I was able to eat and take more meds. I was feeling pretty well at this point, compared to the rest of the day.

So we went to the reception, expecting to be able to stay an hour or two. Unfortunately, there was another problem. The band, which included multiple horns, were all using microphones, amplifying the sound to a completely intolerable level. Of course, I did my very best to be polite and ignore it. Unfortunately, my brain just couldn't take it. I started having a very interesting reaction. The upper half of my body starting convulsing. After I couldn't control it anymore, I begged Gus to get me out of there. We found a couch in the hall, where I let the convulsions go for a couple minutes, without trying to stop them. I've had this reaction a few times before, but never this severe. I certainly never deal well with too much noise or lights or activity. I have the same reaction to being startled, too. I'm not sure the name for it, but I know that it is an autonomic reaction to the brain being overwhelmed. It's not a real seizure, but similar. After I stopped convulsing, I was completed exhausted and hypersensitive. Even the flash of a camera felt like an attack. My whole body felt like it was being attacked. My nerves were on edge. At that point, we gave up on the rest of the night, because we knew the music would last throughout the evening.

We drove home, a little frustrated with my failing body. I was completely exhausted and zoned out for the rest of the night. I slept fine last night, but I'm still exhausted now.

I'm glad we were able to go to most of the day, but as always, I feel guilty for causing problems.

I find that these symptoms are really hard for people to understand. When the symptom is a headache or nausea, everyone can relate, because they've all experienced it at some point. When the symptom is falling partially asleep or going into convulsions, but not having a real seizure, it's a lot harder to explain. The easiest thing is to say that the "sleeping" spells are similar to narcolepsy, and the convulsions are similar to a seizure.

Today, I will be resting until it's time for the piano recital. I will have to find a way to be awake/alert for that time. Then, it's a week off!!! I'm so glad I gave myself this week off. My body is truly exhausted. The real problem is, after a week off, how will I ever convince myself to return to work?

I have gotten started on getting all of the necessary pieces together for Dr. Menezes. I'm still very torn about whether or not I could let another doctor operate on me. But, I'm at least going to get his opinion, if he's willing to see me.

Friday, May 22, 2009

Ice picks

So, last night, I was easily exhausted, and fell asleep quickly (that's not usually my problem). I awoke at 3:30, which wasn't unexpected, as this happens quite often these days (4 nights in a row now). Of course, my Ambien CR is still in the process of being approved. But I'm scared to take it every night and become dependent. Anyway, I woke up with another ice pick headache. It feels just how I imagine a trans-orbital lobotomy would feel (you know, the kind where they stuck an ice pick right over someone's eye and shifted it from side to side). Anyway, this time it was my right eye. Even when I got into a position with traction that lessened the pain, I was unable to fall back to sleep, as my mind was racing. It now takes two .5 doses of Klonopin to let me fall back to sleep (another example of building up a tolerance). Last night, it took the addition of a Vicodin to allow me to sleep. Hopefully the Ambien will help me solve this problem (although it only seems to allow me to sleep from 10:30 PM until 5:30 AM, which just isn't close to enough sleep for me).

So, even though I still have the ice pick headache, I've got some things to get done. My friend, Juan, has inspired me to gather the necessary paperwork/medical information needed to send to Dr. Menezes. I don't have any idea if I would actually have surgery done by a different doctor, but I hope to see him so I have every possibility available to me. It will also be nice to get a new perspective on my situation.

So, my job is to get:
*Copies of X-rays and MRI's done last year
*Copy of surgical reports from NY
*Referal from Dr. Shah to see Dr. Menezes
*Written history of symtpoms/surgeries

Lots of work to do. We'll see what I can get done before the holiday weekend.

Tuesday, May 19, 2009

still painfully tired

So, I added a B Complex vitamin to my list of pills, but it definitely doesn't affect my energy level. I was in a state of sleep paralysis most of the day. I describe it this way, because I am technically aware of my surroundings and my brain is awake, but my body is so tired that I am essentially asleep. I certainly appear asleep. I only wish I could be asleep. But I suppose the Provigil keeps me from actually sleeping. I'm definitely raising the Provigil dose tomorrow. If I take more with my breakfast pills, maybe I will be able to actually function normally during the day. I went to work today, during the small window of time when I had the most Provigil in my system. Without it, I would be completely bedridden again. I've tried skipping Provigil to get some actual sleep, and I truly do remain bedridden for the entire day.

So very tired. Time to sleep again. Haha. Like it does any good. I'll wake up just as tired as I am right now.

I still have all my other symptoms. My head is killing me. But the lethargy is the most limiting symptom right now.

I'm not a fun person to be around right now. It's kinda like being with a person who is sleeping. When a person is sleeping, he/she is not very happy to be bothered in any way. Any touch or sound just annoys the sleeping person. That's how my body is all day long, since I am essentially sleeping. It actually hurts to move, hurts to be touched, and hurts to be talked to. So clearly, I am not the best version of myself right now. Everything seems to bother me. I'm sorry to those that have to interact with me. I'm trying my best.

Still have no idea when I'll be eligible for surgery. I know it's not going to be a quick fix, but I'm ready to get started. This is so frustrating. The libelous journalism about my doctors continues. I'm just ignoring it now. I assume I will still have surgery with The Chiari Institute, when the time comes. Boy, this patience thing really is a challenge.

Monday, May 18, 2009

Still so tired

So, I made it through the weekend, I guess. The recital yesterday went well, even though I was mostly brain-dead the whole time. The fatigue and brain fog has not left me. On Saturday, Gus and I went to a barbecue to celebrate the end of the school year. After 2 hours of sitting down outside, we went inside, and as soon as there was a couch, my body shut down. I didn't fall asleep exactly. I was still aware of my surroundings. But I was mostly paralyzed and very out of it. I would call these low-blood pressure spells, as I have in the past, but they are a bit different, because salt and water don't seem to help. Instead, I seem to need to just stay "asleep" for some time. Most likely, this is a symptom of low oxygen in the brain. I may benefit from oxygen at times like this, but I don't think I'll ever find out, since my O2 stats measured on the finger don't seem to drop too low. Unfortunately, I know that for people like me, the brain can be deprived of oxygen, even if an O2 stat monitor doesn't recognize it. I would like to try oxygen, to see if it would help. On the other hand, nothing beats lying horizontally and allowing the body to rest at times. It's just that this brain fog and extreme fatigue have been with me for at least a week.

Today is another work day. Hopefully, the Provigil will help me again with some artificial energy. Thank you to medical science for finding ways to keep this sick body going.

Friday, May 15, 2009

Not just tired

Despite taking extra salt and Provigil, I have suffered from excessive sleepiness all day. I have fallen asleep multiple times, just briefly, while upright. I also have had temporary paralysis. I can't stop yawning and my eyes keep tearing. I am profoundly tired, but not actually asleep. I feel like if I could fall asleep, I may finally feel rested. I may not be getting recuperative sleep during the night. I may be in a semi-conscious spell, but salt hasn't helped. I'm in such a haze. Maybe my next doses of meds will help. Maybe exhaustion is setting in due to overdoing it due to hypomania this past week. Good night.

Thursday, May 14, 2009

Last Post about the TCI controversy (I hope)

I just want to post my last thoughts, to be sure that a few things are clear.

There was no abandonment by the two neurosurgeons.
1: That the patient came to have surgery on a day when Dr. Bolognese requested an emergency leave was a scheduling mistake by the hospital. 2: Standard OR safety protocol was not followed. No patient is to be put under anesthesia if the surgeon is not present or available. 3: Dr. Milhorat did not have consent to operate. He could do nothing. 4: The hospital is smearing the reputation of these 2 doctors to protect its own public image and hide its own negligence.

Clearly, the investigation is ongoing, so the facts are difficult to obtain. But all of these things should be evident.

There was no wrongdoing on the part of the doctors. The only thing Dr. Bolognese could have done was spoken directly to the patient about his emergency leave. However, he had a family crisis going on, so he probably had many other things on his mind.

Keep in mind that the surgery did happen 3 weeks later, and the patient is already feeling much better! She still trusted her doctors to open her head. She was just hurt by the situation, which is understandable.

THE BEST NEWS: Dr. Bolognese has been reinstated!!! He will be back to saving lives on Monday. Hope has been restored for many across the world. It is so sad that both doctors' reputations were smeared in this ridiculous media circus. It is even sadder that Dr. Milhorat had to retire under a cloud of suspicion. However, he was planning on stepping down from his operating responsibilities this year, anyway. More importantly, his research with The Chiari Institute will continue, probably for the rest of his life. He has dedicated his professional life to exposing this disease and learning all of its intricacies. He has changed so many lives.

Both of these doctors sacrifice most of their lives for their patients. Most days, they perform two long and complex surgeries. Dr. Bolognese follows this up with consultations that last into the evening. He finds a way to make his rounds, visiting his post-op patients every day. Then, when he gets home, he responds to emails from his patients, sometimes into the early morning hours. Then, he sleeps a few hours and starts all over again. Both of these doctors have sacrificed time with their families and any type of private, relaxing, or fun life. Instead, they work. They work and work to find the answers that Chiari patients are desperately seeking. I thank them for their unfathomable dedication.

I hope not to inspire any rude comments from people who disagree with my thoughts. I certainly do not wish to offend anyone. But I do understand that this is a very sensitive topic for some. Nonetheless, I will simply delete any such comments before they are even published.

Rage, continued

Up too late again, but the rage is still vexing me. So I will list some of my grievances, to try to release some of the tension.

I'm disgusted with the media and with the frivolous lawsuits and with the hateful slander against the leaders in our field.

It has also left me lost and confused. I don't know what to do with myself, knowing that the next surgery should be the last one...the one that puts me closer to "normal". But when can this surgery take place?

I'm lucky. I have to wait for surgery anyways, because I'm waiting for my bones to grow more dense before my fusion is revised.

But others are ready for surgery now, and for this ridiculous reason, they can't have the surgeons they trust perform them.

The hospital is clearly at fault for the scheduling situation, in my uninformed opinion.

I don't know about seeing any other doctor. I just can't handle being rejected, humiliated, or disappointed anymore.

At least Dr. Menezes would not even schedule an appointment unless he thought he could help me. Maybe I should try.

But then I feel like a traitor to my doctors at TCI, whom I believe in.

But waiting and waiting and waiting for my bone density to improve and for this controversy to pass just seems unbearable right now, especially in my very agitated state of mind.


I really want to yell and scream and cry and hit things.

Again, I don't think my rage is directly caused by this TCI controversy. It's more about my general dislike for this point in my life.

Work is hard, because my body is not well enough to be working at all. So I hate it.

My body sucks, so I spend much of my time wasting away on this couch, contributing nothing to the world.

I am in so much freaking pain, and I don't even let people know. My pain is so bad. Everything hurts so much. My head is freaking exploding. It feels like my eyes will pop out, along with my brain bursting through my temples and through the hole in the back of my head. My joints hurt when I walk, or even sit up. My muscles throughout my body ache day and night. My spine feels like a collapsed accordion. And did I mention my head??? It never stops. EVER!!!

I don't know when my bones will be stronger. I don't know if I should pay out-of-pocket for the August DEXA scan, because if my bones don't show enough improvement by then, it would all be wasted. I don't know how I can possibly wait until next January for a DEXA scan. Days pass so freaking slowly. Hours pass so slowly. How could I wait EIGHT FRIGGING MONTHS???

And I don't know if this surgery will even help, because so many people end up in worse pain afterwards.

I have to do a bunch of crap to get the referral process started with Dr. Menezes. But who knows if he'll even see me?

And I'm trying to participate in life as much as I need to. But it is so hard. I have to go to work four days a week, whether my body wants to or not. I have host two piano recitals in the next two weeks, which are a huge drain on energy. I have to attend a family wedding the same weekend as one of the piano recitals. I'm really excited to be invited...I just wish it weren't so hard for me. I'm planning summer events. I need to recruit new students, because plenty seem to want to take the summer off. I would like to visit my family in Florida with my dad. I would like to go to the ASAP conference in Madison. I would like to see a musical at Broadway in Chicago. I would like to visit family in California with my mom. Obviously, financial concerns contribute to a lot of these issues...actually all of them.

So, I guess I have plenty of reasons to be mad. Maybe they've just all come together. I just can't stand it right now. I'm so angry for so many reasons. I'm so frustrated, I just can't stand it. I hate my life right now. I love the people in my life. But I still hate my life, for the reasons listed above.

Wednesday, May 13, 2009


I've been calling it crabbiness, but since Sunday night, I have had a ball of rage inside of me. I've been trying to contain it, but it's coming out as me just being mean. I actually feel like screaming and yelling and punching things...and probably hysterically crying for a long time, too. I have to assume that this rage is mostly caused by some imbalance of neurotransmitters in my brain, because I don't have a valid rational reason for it.

I am generally upset about the huge controversy and cloud of doubt surrounding TCI right now. I hate that people are saying so many hateful things about the pioneers in the Chiari field.

I am also stressed because my schedule is getting busy with recitals coming up so quickly.

I'm frustrated as ever about my state of health. My body fails me daily, even if I pretend otherwise. I am in so much pain all the time. There is one surgery left that may help me. But it is a mystery when this could possibly happen. Even if it does happen, who knows if it will help, and I will have so much extra pain to go through to survive it.

But none of this is proper justification for the amount of rage inside of me. So I blame a faulty brain. I just hope I don't hurt too many more people as I try to contain the rage. Hopefully, it will pass soon.

Tuesday, May 12, 2009

Singing...such a bad idea

So I was teaching a piano lesson tonight, and the parents requested that I teach the student some voice, as well. There were multiple problems with this situation. #1 There was no piano bench or chair of any kind to sit on by the piano, so I was either standing, kneeling, or sitting on the floor. That caused pain in my joints and dizziness/POTS symptoms from standing. #2 Teaching a voice lesson involves some amount of singing. I also had to work on diaphragmatic breathing with the student. I have some vocal know-how, because I've taken some voice lessons, and I've been in choirs my whole life. But I can no longer sing. It causes so many symptoms for me.

So, I left the lesson falling down in the driveway, and scarily making my way home. I then had to walk to the house, which I did after many more falls on the pavement. Now that I'm home, my head is absolutely exploding, and I still have no sense of balance.

So, I've definitely learned that singing is still on the list of BANNED ACTIVITIES.

If only I could convince the parents of the student that I am unable to provide vocal instruction. I could try to only give instruction, but demonstration is always necessary. I'm very frustrated that I made myself worse, even though I knew better.

Chiari news / bad day / symptom watch

As I learned from my friend, Kristen, Dr. Milhorat, the director and founder of The Chiari Institute, is stepping down from his position as Chief of Neurosurgery at the Northshore University Hospital. I don't know if this is related to the suspension last month. I hear that he will continue helping with research. But of course, it is sad for me, because he and Dr. Bolognese have been my surgical team for both my first fusion and my detethering. I will still trust Dr. Bolognese with my life, but I prefer the team I've come to rely on.

I know Dr. Milhorat has come under some scrutiny recently, but I believe that he is an amazing man. He is responsible for spearheading so much of the research that has been done on Chiari in the last two decades. He brought Chiari into the light. He continues to work so hard to more fully understand the many problems associated with this wretched malformation. Many people owe their lives to this man, directly and indirectly.

Personally, today was a long and frustrating day. I was very irritable. I'm sorry to my family that had to deal with this crabbiness. Nonetheless, the work is done. I'm looking forward to the next two weekends, when my students will be playing in recitals. It's a lot of work, but worth it. As always, I just hope for my body to be up for the challenge. During an ideal weekend, I rest essentially the whole time, to help me recover from the week. That won't be possible for the next two weekends, due to two recitals and a wedding. It's a lot to expect from my body. I hope I make it through. That is why I gave myself and my students the following week off. I know I'll be counting down the days in my head until April 25th.

My choking has continued. Each time I have a choking spell, I get a massive headache, due to not breathing for so long, and coughing so hard. The bronchospasms continue for the rest of the day. I've had 4 days in a row with choking spells now. Clarification: I swallow the wrong way often. Usually, just a few coughs will correct that problem. But in a major choking spell, I cough and cough, but then I am unable to inhale air for a prolonged period of time. There is nothing to do for it (like the Heimlich maneuver), because I tend to choke on water. It takes time, but I eventually catch my breath each time. Unfortunately, I manage to scare myself and the people around me, as each time it seems that I may not catch my breath. However, I have never had a choking spell lead to loss of consciousness, so I hope my family can try not to worry. It is scary in the moment, though.

My headache is pretty high right now, definitely time for bed. The shortness of breath came back for the first half of the day (from 12 to 4). Once I'd had 4 salt pills and 2 doses of Midodrine, I finally seemed to be able to catch my breath. This seems to mean that the more fluid I can retain, the less hard my heart has to work. At least something helps, some of the time. My neck and shoulder muscles are so tight. My shoulders seem to hunch a lot of the time. When I try to bring my shoulders back to a normal position, I feel pulling of very tight scalene muscles. This would take some major massage therapy to work out. Especially since it comes back so easily.

I've also had many episodes of abdominal pain, lately. I don't believe that it is related to my removed gallbladder in any way. I sometimes tolerate food just fine, but other times, I get very sick from the same foods. I know I could go back on the IBS diet, but I'm just not ready to do that without trying a few other things, first.

*See Dr. Aziz, gastroenterologist
*Contact Dr. Shah re: referal to Dr. Menezes
*Contact imaging center in New York to get an extra copy of last year's scans

Saturday, May 9, 2009

Symptom watch

Woke up with a horrible headache today, and lots of pain. Back pain, left leg aching, exploding brain, ice pick over right eye, sharp abdominal pains, etc. I was meaning to skip my Provigil, but somehow took it anyway, so I guess I won't have a day of rest.

I've been keeping an accurate a complete symptom list for a while now. I figure it will be useful to have a very detailed list, to remind me of what I feel like right now. That way, when I have surgery again and start to recover, I will be able to start crossing symptoms out as I notice them leaving. (Thanks to Virginia for pointing out this spectacular use of the symptom list!)

So, here is my detailed and updated symptom list:

Symptoms as of May 2009

Constant pressure headache (pushing out around the skull, esp. the top)
Constant occipital headache
Facial pain through cheekbones
Jaw pain--tires easily, making it difficult to chew
Eye pressure
“Sunken halo” headache pain (above the eyes and through the temples)
Sharp pain above one eye, radiating outward
Migraines are hormonal, pre-menstrual
Usually worsened by light and low sounds
Headaches that wake me up at night due to intensity
Most headache pain relieved with manual or mechanical cervical traction

decreased appetite
smaller range of foods seem palatable
often skip meals


Overall sick feeling

Spinal pain
Lumbar spine pain in area of tethered cord surgery
Thoracic spine pain between the shoulder blades, worsened with deep breathing
Cervical spine pain, especially in the 3-4 vertebra below the fusion

Orthostatic intolerance
Exercise intolerance--becoming winded after only 3 or 4 stairs
Heart working extra hard and pounding
Shortness of breath
Heartbeat irregularities/arrhythmias

Low blood pressure
From standing (5 minutes still, 15 minutes walking)
Spells several times a week--semi-conscious, helped with salt tablets and water
Necessitates a wheelchair for any trip over 5 minutes

Falls several times a day
Sudden weakness
Sudden loss of balance

Heavy head

Swallowing problems
Trouble swallowing pills-need chin down, chest out, sometimes gets stuck
Choke on food and water
Weak gag reflex

Wake up sweating and shivering

Out of it, easily startled, “dazed and confused”, zoning out

Difficulty concentrating, thinking of words

Auditory processing dysfunction
I can only understand what is being said to me if there is no background/conflicting noise.
I use subtitles on the television whenever possible to help with auditory comprehension.

Sleep problems
Often awake during the night at least once or twice, unrelated to bladder

Bone and joint pain

Muscle aches

Skin sensitivity/allodynia

Poor proprioception, losing footing, can’t walk on uneven ground

Vertigo spells (spontaneous, not dependent on posture)

Clumsiness, loss of balance, decreased reflexes (slow to catch myself or realize I’m falling)

Pupil dilation
Very large pupils most of the time
Often non-reactive

Muscle spasms
Sharp pain and burning in shoulders
Painful tension in neck
Shoulder hunch due to chest tension

Temperature control problems
Patches of goosebumps
Overheating easily
Excessive sweating
Temperature variation from 96.5-100.5 with no sign of infection

Episodes of cranio-cervical instability
Pounding heart
Shortness of breath

Tingling in left hand

Seeing stars around visual field for no apparent reason

Tinnitus (occasional)

Tingling in scalp

Toes are almost always cold...bath water feels boiling hot to my toes

Intense itchiness, leading to scratched-off skin

Feelings of pain/tightness in chest

Floating sensation

Hormonal imbalance--symptoms of PMDD

Low stress tolerance

Sensory overload--overwhelmed by loud noises and bright lights (movie theaters, crowds of people)

Hiccups--usually when going from horizontal to vertical

Rage attacks
Panic attacks
Erratic emotions

Bloating and abdominal pain after eating, sometimes mild, sometimes severe and excrutiating

Wednesday, May 6, 2009

A Big Day in the Chiari World

Well, I'd like to ignore this topic, but it has come to be such an important part of the Chiari world today, so I will mention the events of the day, give my thoughts, and move on.

An article was written in a New York newspaper about my two main neurosurgeons from The Chiari Institute. Clearly, this article only gave part of the story. But the main point is that both Dr. Milhorat and Dr. Bolognese were suspended after Dr. B was not present to perform surgery, when the patient had already been anesthetized. The surgery in question took place on April 10. There are several missing facts in this article. Dr. Bolognese had a family emergency during the month of April, which resulted in many surgeries being postponed for several weeks. I know that I have some friends that were waiting for surgery, and they had to reschedule. One family of which I am aware was even reimbursed for their travel expenses. It only makes sense that the surgery in question was the first surgery scheduled after Dr. Bolognese's emergency. And I am disposed to believe that a miscommunication took place, allowing the surgery not to be cancelled. However, this does not explain why the entire surgical team prepared the patient for surgery without having any contact with the lead surgeon. I feel that this may be a case of misplaced blame, or of the hospital trying to protect itself by blaming the missing doctor, not the lack of coordination within the hospital.

I would ask anyone reading this to withhold judgement on these two remarkable doctors, who are the pioneers in the treatment of Chiari-related conditions. Due to confidentiality restrictions, it is quite possible that we may never know the full story. However, many in the Chiari world owe our lives to these two doctors, and we hate to see this kind of slander against them. To have The Chiari Institute discredited in any way is a serious blow to the thousands of patients that have found validation for their disease in the face of local ignorance.

The Chiari Institute is on the cutting edge of neuro-medicine. This means that they are constantly scrutinized for their work. Without them, new treatments would not be found. And yes, this does sometimes involve performing surgeries that are "unproven". How else would they ever become "proven"?

I will not say that I have had constant, unwavering support of The Chiari Institute, myself. But I've always felt that they are the best option available. That doesn't mean that I cannot seek outside opinions. In fact, if my fusion revision is postponed, I am considering seeing another fusion specialist, Dr. Arnold Menezes. The option to seek outside opinions is available to every patient at The Chiari Institute.

I'm sure I had other things to say today, but my mind has been distracted by the constant debate that has taken over the Chiari world. I'll try to list the other issues on my mind today, if nothing else, so I can stop thinking and get some sleep.

*I'm concerned that my body is already building up a tolerance to the Provigil. My dose has been largely ineffective so far this week. I have had difficulty concentrating and staying awake, even taking twice my usual dose. One of my biggest fears has always been having the medicines that actually help me stop working. This includes Provigil and pain medications. This is why I take strong pain medication so sparingly; I fear requiring more and more medicine to achieve the same level of pain relief. To have this become a concern so soon for my Provigil is very worrisome. It's become clear that my body really works better on this medication. I will have to experiment with skipping days to see if I can find a dose where the medication helps when I need it. This may just be my body's way of complaining that I need more rest.

*I don't expect to hear back from The Chiari Institute in the next few days, due to the media harassment. However, I am anxious to hear if June received my test results and Dr. Camacho's recommendations. I am still holding on to the small possibility that Dr. Bolognese would approve surgery for me based on my improving blood counts. Of course, I understand that Dr. Bolognese's schedule will be backed up for quite some time now. I can't expect a prompt response. I will just have to be patient to hear back on this issue.

*This does lead me to wonder if Dr. Menezes would be willing to see me in the meantime. Dr. Arnold Menezes practices in Iowa, and specializes in skull-base deformities with chiari, like retroflexed odontoid. His experience focuses on transoral odontoidectomies combined with cranio-cervical fixation. I've heard that he is a very picky doctor, when it comes to choosing his patients. He turns away many that are referred to see him. However, a friend told me that he actually has an interest in revising cranio-cervical fusions. So maybe I would be just the type of patient he would be interested in seeing. I would certainly like to hear his opinion on the state of my skull and spine. However, I would need to see my general practitioner and ask for another referall, as Dr. Menezes only sees referred patients. I would also need to get together any recent imaging I've had done. That might involve requesting a copy from the imaging place in New York. Clearly, this would take some time to work out. The to-do list never ends.

*The American Syringomyelia and Chiari Awareness Project holds a national conference every year. This year's conference is taking place in Madison, WI. If I am not recovering from surgery at that time, I am hoping to attend some or all of the conference. It would be a great opportunity to meet many people with Chiari and learn a lot from leading Chiari doctors.

*Symptoms this week: brain fog, exploding brain-type headache, fatigue, aching pain throughout the body, dizziness, choking, hiccups, falling into things

That's all for today, but I'm sure I'll have more to say, once I can think straight again.

Tuesday, May 5, 2009

The Mask

It was a busy weekend. Friday night, I went to my old high school (yes, the hell-house itself) to see the spring musical. It was a lot of fun. Then, Saturday, we had a benefit concert combining my church and my grandma's church. A lot of the family were there and participating, so it was really good that I could be there. It was a fun day. I rested whenever I could, but was still out of energy by the end of the day. Sunday, I stayed with Gus. Did a little sorting around the apartment. Otherwise, we just had a nice day.

Monday was a difficult day. I was very fatigued for most of the day. I took a double dose of Provigil before work. That meant that I had what it took to make it through my lessons. And of course, I smiled, and everyone thought that I looked so healthy! But as soon as I got home, I crashed. Every cell in my body hurt. I couldn't move. I fell asleep early, and slept for 12 hours. I'm still exhausted today. My mind is also very distracted, so I'm sorry if I'm not making much sense.

I'm so tired of people not being able to see through the mask. It's not like I can take the mask off. It would be unprofessional. And it's a great way to lose friends (I've learned this from experience). I must pretend to be happy and healthy, at least relatively so. Even though inside, I am in pain every day. I have symptoms every day. It is just so hard to live a lie.

My mind is wandering. I can't stay focused. So maybe I'll write more later.