June 18 was the big day. It was officially 2 years after my tethered cord surgery and my previous invasive cervical traction test.
Gustavo and I went on this trip. We stayed at the Variety House.
In the early morning of the 18th, I went to get new imaging done. 2 MRIs, 2 CTs, and several x-rays. Of note, we did a flexion and extension x-ray. I was surprised to find that during the extension x-ray, I was able to extend my head back all the way until it was touching my upper back, despite having an intact skull to C-4 cranio-cervical fusion in place. That's EDS for you. Super flexible!
Anyway, my appointment at The Chiari Institute was scheduled for 3:00, so of course, we went in at 6:00. We talked with Andrea, a very nice nurse practitioner for quite a while. We discussed all of my symptoms and my current condition. After that, we waited a bit more. Then, we finally went in to see Dr. B. It was his last appointment on a Friday evening, so he was very relaxed and making jokes. We got to meet with him in his main office instead of an exam room. During the visit, I did not feel pressure to prove myself to him at any time. Instead, he just explained what the next steps would be for me, in detail.
1. Need a good DEXA scan. Good means borderline normal, or a T-score at or above -1.0.
2. Need to continue treatment for bones now and after surgery.
3. Invasive Cervical Traction needs to test positive for instability.
4. Cranio-Cervical Fusion Revision will be performed.
Dr. B said that no bony fusion formed between the skull and C2, so the area has collapsed, due to osteopenia. That is the reason why the symptoms never got better, and have even gotten worse.
This is why it is so important to have strong, growing bones at the time of fusion.
Instead of one solid mass of bone and titanium, I have just naked rod connected to my bones. The area never filled in with bone.
The newest revision technique has been very successful at preventing this problem. It involves replacing 90% of my hardware. It also involves using a cadaver fibula in the shape of a V along with ground up cadaver bone, all tied together with titanium wire. This all encourages a bony fusion to form.
This surgery has been successful for many people and formed solid fusions for them.
It felt like a very successful visit, and I feel like there are not many roadblocks left on my way to surgery.
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Next, I went to my general practitioner this week. He listened to the update, and he immediately prescribed Forteo for me. Awesome. I started it on Monday! So I'm back in the bone-building game.
He also ordered a new DEXA scan to be done, which I had done yesterday. We got the results today. Unfortunately, the results were not what we were hoping for (-1.5 and -1.7). I believe very strongly that the difference has to do with slight differences between machines. My former endocrinologist told me that every single DEXA machine reads differently from every other machine, so you should try to stick with the same machine. Also, on the DEXA results, it says that changes of <5% are not statistically significant on repeat scans.
So, my current plan is to continue DEXA treatment for 2-3 more months, and then have a repeat DEXA on one of the other two machines that I have been using for treatment, whichever one I can get in to use. I truly hope that that makes the difference in the results that I need. When we're looking for such small changes, it seems like anything could make the difference. Hopefully, it really is just the change in machines.
The hard part will be convincing insurance to cover another DEXA this year. But it's so important, I would do whatever it takes to get another one this year. I can't put surgery off forever, not when I know how good it could be. This is just one more frustrating delay.
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My roommate at the Variety House was recovering from this exact surgery. And she was doing remarkably well. She felt so much better. She looked so good. She sat up by choice. Her post-surgical pain seemed minimal. She went into the city to see a show! Her success is my new inspiration to keep going until I have this surgery.
Friday, June 25, 2010
Saturday, May 15, 2010
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chiari I Malformation, Postural Orthostatic Tachycardia Syndrome (Autonomic Dysfunction), Ehlers Danlos Syndrome, Cranio-cervical instability/Functional cranial settling
2. I was diagnosed with it in the year: Chiari in 2002, the rest in 2003
3. But I had symptoms since: 1998-ish
4. The biggest adjustment I’ve had to make is: giving up on the idea of having a career; getting used to a drastic reduction in ALL activity
5. Most people assume: that if I look like everyone else, I must feel like everyone else. That if I put a smile on my face, then I’m doing just fine.
6. The hardest part about mornings is: Facing another day. Knowing it will feel like 10,000 days. Feeling like I weigh 10,000 pounds. Feeling worse than I did the night before. Feeling more tired than I did the night before. Feeling like my life currently holds such little meaning—why should I force my body out of bed just to watch TV all day?
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My laptop…connection to civilization
9. The hardest part about nights are: Being all alone with my pain and my thoughts, and unable to sleep, over and over and over again.
10. Each day I take __34__ pills & vitamins (Plus fish oil and any as needed meds, like pain meds). (No comments, please)
11. Regarding alternative treatments I: generally stick to what a doctor recommends, with a couple recent exceptions. I believe in empirically-supported medicine. I love massage therapy!!!
12. If I had to choose between an invisible illness or visible I would choose: I think I’d prefer a visible illness, because then people would understand immediately that my smile does not come easily. It is a gift for them.
13. Regarding working and career: When I thought I was getting better, around 2007, I had a piano studio of 24 students. But it was really a ruse. I was living off of stimulants and narcotics. I couldn’t keep it up. My body started protesting with narcoleptic episodes. As soon as I slowed down on the meds, my ability to work slowed down, too. I’m now down to about 3 half-hour lessons/week. And even that is a challenge. I don’t even know if this is the career I want to stay with. It’s just the only career I thought I could pull off as I was going through college. I have no idea if or when I’ll be able to work more. And I have no idea what job I would have chosen without limitations, or if I'll ever find a different one.
14. People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain. Also, the severity of everyday fatigue.
15. The hardest thing to accept about my new reality has been: My lack of independence and loss of social life. They do go together.
16. Something I never thought I could do with my illness that I did was: Graduate from a 4-year college. At one point, I also got into really good physical shape. I hope to do that again when my body allows.
17. The commercials about my illness: n/a
18. Something I really miss doing since I was diagnosed is: Gymnastics, Exercising, Singing, Performing on stage in some way.
19. It was really hard to have to give up: Driving…I need to drive again for my sanity. I feel so confined.
20. A new hobby I have taken up since my diagnosis is: I started a support group, but then became physically incapable of running it. I read a lot of books, but that’s not new. I watch endless hours of tv, but I’m not proud of it. I guess I’ve learned to relax. I always used to be so busy and stressed in high school and younger.
21. If I could have one day of feeling normal again I would: spend it doing all of the things my fiancé has always wanted to do with his partner, but can’t with me. He deserves that day of normalcy even more than I do. So it would be his choice. I think it would involve skipping and jumping and running (for me).
22. My illness has taught me: how to relax. How to listen to my body. How to revise my expectations for myself in life. How to accept myself as I am now.
23. Want to know a secret? One thing people say that gets under my skin is: if you just stay positive 24/7, you’ll be better off. That’s not necessarily true! Okay? We need to live in the real world, and we need to accept our circumstances as they are in order to cope with them. Not just pretend that everything is fine and put on a happy face. No one should have to pretend to be optimistic 100% of the time!
24. But I love it when people: Care, Listen, Learn about my messed up brain. Especially doctors.
25. My favorite motto, scripture, quote that gets me through tough times is: “A journey of a thousand miles begins with a single step.” –Lao Tzu. Because what can we really do, other than persevere.
26. When someone is diagnosed I’d like to tell them: Allow yourself to grieve, time and time again, over everything you lose to this illness. It’s the only way you will learn to accept your new self.
27. Something that has surprised me about living with an illness is: How ignorant the entire medical community is about all of these illnesses. The number of times and ways they have let me down.
28. The nicest thing someone did for me when I wasn’t feeling well was: Lay next to me, without touching me, when my skin was too sensitive to be touched. Just because my skin hurts, doesn’t mean I don’t want to be held, just that I can’t be.
29. I’m involved with Invisible Illness Week because: n/a
30. The fact that you read this list makes me feel: Heard.
2. I was diagnosed with it in the year: Chiari in 2002, the rest in 2003
3. But I had symptoms since: 1998-ish
4. The biggest adjustment I’ve had to make is: giving up on the idea of having a career; getting used to a drastic reduction in ALL activity
5. Most people assume: that if I look like everyone else, I must feel like everyone else. That if I put a smile on my face, then I’m doing just fine.
6. The hardest part about mornings is: Facing another day. Knowing it will feel like 10,000 days. Feeling like I weigh 10,000 pounds. Feeling worse than I did the night before. Feeling more tired than I did the night before. Feeling like my life currently holds such little meaning—why should I force my body out of bed just to watch TV all day?
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My laptop…connection to civilization
9. The hardest part about nights are: Being all alone with my pain and my thoughts, and unable to sleep, over and over and over again.
10. Each day I take __34__ pills & vitamins (Plus fish oil and any as needed meds, like pain meds). (No comments, please)
11. Regarding alternative treatments I: generally stick to what a doctor recommends, with a couple recent exceptions. I believe in empirically-supported medicine. I love massage therapy!!!
12. If I had to choose between an invisible illness or visible I would choose: I think I’d prefer a visible illness, because then people would understand immediately that my smile does not come easily. It is a gift for them.
13. Regarding working and career: When I thought I was getting better, around 2007, I had a piano studio of 24 students. But it was really a ruse. I was living off of stimulants and narcotics. I couldn’t keep it up. My body started protesting with narcoleptic episodes. As soon as I slowed down on the meds, my ability to work slowed down, too. I’m now down to about 3 half-hour lessons/week. And even that is a challenge. I don’t even know if this is the career I want to stay with. It’s just the only career I thought I could pull off as I was going through college. I have no idea if or when I’ll be able to work more. And I have no idea what job I would have chosen without limitations, or if I'll ever find a different one.
14. People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain. Also, the severity of everyday fatigue.
15. The hardest thing to accept about my new reality has been: My lack of independence and loss of social life. They do go together.
16. Something I never thought I could do with my illness that I did was: Graduate from a 4-year college. At one point, I also got into really good physical shape. I hope to do that again when my body allows.
17. The commercials about my illness: n/a
18. Something I really miss doing since I was diagnosed is: Gymnastics, Exercising, Singing, Performing on stage in some way.
19. It was really hard to have to give up: Driving…I need to drive again for my sanity. I feel so confined.
20. A new hobby I have taken up since my diagnosis is: I started a support group, but then became physically incapable of running it. I read a lot of books, but that’s not new. I watch endless hours of tv, but I’m not proud of it. I guess I’ve learned to relax. I always used to be so busy and stressed in high school and younger.
21. If I could have one day of feeling normal again I would: spend it doing all of the things my fiancé has always wanted to do with his partner, but can’t with me. He deserves that day of normalcy even more than I do. So it would be his choice. I think it would involve skipping and jumping and running (for me).
22. My illness has taught me: how to relax. How to listen to my body. How to revise my expectations for myself in life. How to accept myself as I am now.
23. Want to know a secret? One thing people say that gets under my skin is: if you just stay positive 24/7, you’ll be better off. That’s not necessarily true! Okay? We need to live in the real world, and we need to accept our circumstances as they are in order to cope with them. Not just pretend that everything is fine and put on a happy face. No one should have to pretend to be optimistic 100% of the time!
24. But I love it when people: Care, Listen, Learn about my messed up brain. Especially doctors.
25. My favorite motto, scripture, quote that gets me through tough times is: “A journey of a thousand miles begins with a single step.” –Lao Tzu. Because what can we really do, other than persevere.
26. When someone is diagnosed I’d like to tell them: Allow yourself to grieve, time and time again, over everything you lose to this illness. It’s the only way you will learn to accept your new self.
27. Something that has surprised me about living with an illness is: How ignorant the entire medical community is about all of these illnesses. The number of times and ways they have let me down.
28. The nicest thing someone did for me when I wasn’t feeling well was: Lay next to me, without touching me, when my skin was too sensitive to be touched. Just because my skin hurts, doesn’t mean I don’t want to be held, just that I can’t be.
29. I’m involved with Invisible Illness Week because: n/a
30. The fact that you read this list makes me feel: Heard.
Friday, May 14, 2010
A Day in the Life (with Chiari/POTS/EDS/Cranial Settling/Cranio-Cervical Instability)
I wake up around noon (please don’t express jealously--that's just mean). I immediately feel the aches and pains of the morning and the headache of the day, but it’s usually too soon to know how bad the day will be. At this point, I can only tell if it will be an easy or a difficult wake-up. Some mornings, I wake up feeling like I’ve actually slept. Most mornings, though, I wake up feeling the peak of lethargy. Either way, I drag my heavy body out of bed and head downstairs.
First, I eat a bowl of Grape Nuts on the couch. This is followed by my morning pills. I may or may not have a dramatic and prolonged choking spell on a pill, or even my water, for that matter. At this point, I am unable to move until lunch time. I force myself to eat lunch exactly two hours after I finish eating breakfast. The routine is helpful in remembering to eat, because hunger often never comes. Quite often, before lunch comes, I have a spell of reduced consciousness. My body goes limp, and I am unable to respond to much. If anyone is around and realizes that I am not just asleep, they may come and force a salt pill and water in my mouth. That will resolve the spell within ten minutes, most days. If no one is around or notices, I may remain semi-conscious for an extended period of time, unable to do anything. For lunch, my mom or my fiancé helps me to get apple slices and Triscuits. Then, I take my lunch pills. At this point, I am still unable to get off the couch for several more hours.
On a good day, around 5:00, I will be able to go get washed up and dressed. I don't have the energy for a shower every day, or to even get dressed every day. But most days, I do get to eat dinner and take more pills. Since I can’t drive, there is nothing to do after dinner. I don’t have the energy anyway. I’d like to go for a walk around the block for my Physical Therapy, but currently, I’m not allowed to, because I’m so likely to have a drop attack. (I would enjoy getting out of the house, but even a walk around the block causes a considerable increase in pain, even on a good day. But this isn't allowed right now.) So, I generally just sit around and watch t.v. until 9:00, because that’s the only time of day that I may have company. At 9:00, I may try a few exercises (planks, toe raises, etc.). I’m always too tired, but I’ll force myself somedays. It is pure torture to exercise. If you see me exercise, you'll wonder what is wrong with me. But that's just the look of pain on my face from the exercise.
Miraculously, the best time of day for me, and many POTS patients, is late at night, which is why I’m typing this at 2:00 a.m. Unfortunately, this is another lonely time of night. Lately, the loneliness leads to a lot of tears, but that's not too unusual. It also ends up being a very unproductive time. But it’s hard to go to sleep too early, when it’s the best you’ve felt all day.
I've skipped over exciting things, like drop attacks, where I collapse straight to the floor in the middle of whatever I'm doing, or days of horrifying pain that prevent me from leaving my darkened bedroom. We'll skip any emotional peaks or particularly strange symptoms. We'll stick with average days.
So, that’s life. And I think it explains why I find it essentially impossible to work, nearly impossible to work out, and why I haven’t been able to maintain any friendships in years. How do you maintain a social life with a life like this (other than a virtual one)? Virtual friends are great, but they may or may not be counter-productive to real life relations, or so I’ve heard.
And so, I keep on living. Thank goodness for compassionate caretakers and little canine companions.
Disclaimer: I don't mean to say that this is what a day in the life of anyone with these conditions is like...just that this is what an average day at this point in my journey is like.
First, I eat a bowl of Grape Nuts on the couch. This is followed by my morning pills. I may or may not have a dramatic and prolonged choking spell on a pill, or even my water, for that matter. At this point, I am unable to move until lunch time. I force myself to eat lunch exactly two hours after I finish eating breakfast. The routine is helpful in remembering to eat, because hunger often never comes. Quite often, before lunch comes, I have a spell of reduced consciousness. My body goes limp, and I am unable to respond to much. If anyone is around and realizes that I am not just asleep, they may come and force a salt pill and water in my mouth. That will resolve the spell within ten minutes, most days. If no one is around or notices, I may remain semi-conscious for an extended period of time, unable to do anything. For lunch, my mom or my fiancé helps me to get apple slices and Triscuits. Then, I take my lunch pills. At this point, I am still unable to get off the couch for several more hours.
On a good day, around 5:00, I will be able to go get washed up and dressed. I don't have the energy for a shower every day, or to even get dressed every day. But most days, I do get to eat dinner and take more pills. Since I can’t drive, there is nothing to do after dinner. I don’t have the energy anyway. I’d like to go for a walk around the block for my Physical Therapy, but currently, I’m not allowed to, because I’m so likely to have a drop attack. (I would enjoy getting out of the house, but even a walk around the block causes a considerable increase in pain, even on a good day. But this isn't allowed right now.) So, I generally just sit around and watch t.v. until 9:00, because that’s the only time of day that I may have company. At 9:00, I may try a few exercises (planks, toe raises, etc.). I’m always too tired, but I’ll force myself somedays. It is pure torture to exercise. If you see me exercise, you'll wonder what is wrong with me. But that's just the look of pain on my face from the exercise.
Miraculously, the best time of day for me, and many POTS patients, is late at night, which is why I’m typing this at 2:00 a.m. Unfortunately, this is another lonely time of night. Lately, the loneliness leads to a lot of tears, but that's not too unusual. It also ends up being a very unproductive time. But it’s hard to go to sleep too early, when it’s the best you’ve felt all day.
I've skipped over exciting things, like drop attacks, where I collapse straight to the floor in the middle of whatever I'm doing, or days of horrifying pain that prevent me from leaving my darkened bedroom. We'll skip any emotional peaks or particularly strange symptoms. We'll stick with average days.
So, that’s life. And I think it explains why I find it essentially impossible to work, nearly impossible to work out, and why I haven’t been able to maintain any friendships in years. How do you maintain a social life with a life like this (other than a virtual one)? Virtual friends are great, but they may or may not be counter-productive to real life relations, or so I’ve heard.
And so, I keep on living. Thank goodness for compassionate caretakers and little canine companions.
Disclaimer: I don't mean to say that this is what a day in the life of anyone with these conditions is like...just that this is what an average day at this point in my journey is like.
Friday, April 30, 2010
Nothing New
No new developments in my medical life.
This Monday, May 3, the Fox show, "House," will be focusing on diagnosing a patient with Chiari Malformation. The episode is called "The Choice." Based on the promo, we know three things so far: 1. The patient is male. 2. He is accused of faking his symptoms. 3. He begins lactating. The second fact is very common of Chiari patients. And the lactating seems to be a sign of hormonal imbalance, probably caused by flattening of the pituitary gland, which is also common in Chiari patients. They just had to find a shocking presentation of the disease for the show. (At least this is my analysis.)
I'm pretty excited to see it. I hope a lot of people see it. We'll see if it can bring some awareness to the condition.
I found a compilation of symptoms of autonomic dysfunction that is really comprehensive. I'm including the link here. I'm also going to include a few that I found to be particularly specific to me that I hadn't seen before.
http://heavenleigh412-ivil.tripod.com/id23.html
-"Irritability due to decreased blood flow to the brain"
-"Inability to tolerate changes in temperature"
-"Abnormal deep tendon reflexes"
-"Intelligence is normal when receiving adequate cerebral perfusion."
-"Disruption of sleep/wake cycle usually consisting of increased energy late in the evening and lowest energy level in the morning regardless of amount or quality of sleep."
-"Need to sleep 12-14 hours in order to complete simple activities of daily living."
-"Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs or reaching for an object."
-"Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because he/she did not perceive anyone or anything next to them.
-"Frequent "bumping into things." Attributed to a combination of visual and depth perception deficits."
-"Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds."
-"Sensitivity to odors. May cause extreme nausea, retching, vomiting, dizziness, and headache."
-"Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain, especially right after an episode or if the patient has not had enough sleep."
-"Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode."
-"Speech disturbances: Inability to finish a thought, loss of train of thought, especially if up and about for 2 hours or more without lying flat and resting."
-"Comprehension difficulties. Inability to follow a conversation. May hear words but be unable to understand their context in a sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Looses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.
-"Memory recall deficits in long and short term memory. Improves with lying down and resting."
-"Abdominal migraines. Severe stomach pain triggered by large meal or sitting or standing too long. Usually resolves if patient lies quietly."
-"Drifting to the right or left when walking."
I just found these to be interesting, as they are all quite specific symptoms that may not have been noted elsewhere. I found them all at the website listed above.
This Monday, May 3, the Fox show, "House," will be focusing on diagnosing a patient with Chiari Malformation. The episode is called "The Choice." Based on the promo, we know three things so far: 1. The patient is male. 2. He is accused of faking his symptoms. 3. He begins lactating. The second fact is very common of Chiari patients. And the lactating seems to be a sign of hormonal imbalance, probably caused by flattening of the pituitary gland, which is also common in Chiari patients. They just had to find a shocking presentation of the disease for the show. (At least this is my analysis.)
I'm pretty excited to see it. I hope a lot of people see it. We'll see if it can bring some awareness to the condition.
I found a compilation of symptoms of autonomic dysfunction that is really comprehensive. I'm including the link here. I'm also going to include a few that I found to be particularly specific to me that I hadn't seen before.
http://heavenleigh412-ivil.tripod.com/id23.html
-"Irritability due to decreased blood flow to the brain"
-"Inability to tolerate changes in temperature"
-"Abnormal deep tendon reflexes"
-"Intelligence is normal when receiving adequate cerebral perfusion."
-"Disruption of sleep/wake cycle usually consisting of increased energy late in the evening and lowest energy level in the morning regardless of amount or quality of sleep."
-"Need to sleep 12-14 hours in order to complete simple activities of daily living."
-"Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs or reaching for an object."
-"Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because he/she did not perceive anyone or anything next to them.
-"Frequent "bumping into things." Attributed to a combination of visual and depth perception deficits."
-"Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds."
-"Sensitivity to odors. May cause extreme nausea, retching, vomiting, dizziness, and headache."
-"Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain, especially right after an episode or if the patient has not had enough sleep."
-"Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode."
-"Speech disturbances: Inability to finish a thought, loss of train of thought, especially if up and about for 2 hours or more without lying flat and resting."
-"Comprehension difficulties. Inability to follow a conversation. May hear words but be unable to understand their context in a sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Looses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.
-"Memory recall deficits in long and short term memory. Improves with lying down and resting."
-"Abdominal migraines. Severe stomach pain triggered by large meal or sitting or standing too long. Usually resolves if patient lies quietly."
-"Drifting to the right or left when walking."
I just found these to be interesting, as they are all quite specific symptoms that may not have been noted elsewhere. I found them all at the website listed above.
Monday, April 19, 2010
More Doctors
Appointment with Endocrinologist 4/5/2010
I don't quite know how to explain what happened at this appointment. It didn't go well. It felt like an interrogation, actually. First, she asked if my surgeons were satisfied with my recent DEXA scans. I told her that I wasn't sure, but I thought that they wanted me to continue on the medication, since I am still in the range of Osteopenia. She said that this was ridiculous, and with any other patient, we would be celebrating right now. She said that she would not renew my prescription for Forteo any longer, because my bones are strong enough as they are, and no reputable surgeon would require them to be any denser. The interrogation began. She started asking me questions about the reasoning for each of my surgeries and what improvements I saw with each one. Then she questioned why I was having my current surgery. She told me she thought I should consider if I really needed the surgery, and getting a different surgeon. At the very least, she thought I should see a neurosurgeon that she recommends for a second opinion...a neurosurgeon that doesn't even specialize in Chiari, much less cranio-cervical instability and fusions. Before I could even ask her the rest of my questions, she walked out of the appointment, not to return. It was completely condescending and rude. I felt like I'd been slapped across the face. At the same time, I wasn't surprised. I've been through all of this before. It's just been a while.
I did learn one positive thing at this appointment: I asked her if my salt intake was affecting my bones, considering I take salt tablets regularly, so I get more than the average recommended amount. She said that all of my tests showed normal amounts of sodium in 24-hour urine samples, and I don't need to worry about my salt intake at all. YAY!!! My body simply metabolizes much more salt in a day than a normal person, so the salt doesn't leach calcium from my bones. So, as long as I don't take more than I feel I need, I'm fine. I know I was taking 5-6 tablets a day when I had those tests done. So that should be a safe amount for me.
I am not certain if I will return to this endocrinologist. I may need to find a new one to prescribe Forteo, which I know won't be easy, from experience. But I will wait for now.
Appointment with Dr. Grubb 4/14/2010
My appointment with Dr. Grubb was excellent.
He is unhappy for me that I need another surgery, but he is in support of the surgery, and expects that I will see some improvement in POTS symptoms from the surgery. It seems we have come to the understanding that my POTS symptoms will never be cured. But he says that if the surgery helps, then the symptoms will be easier to manage with medications.
Surgery recovery is expected to cause another large setback in POTS symptoms. There is simply nothing to do about that. But if I am struggling a lot, I should consider contacting him. Perhaps to consider IV fluids to get me through the rough time.
Exercise is still Dr. Grubb's number one concern. He suggested a recumbent bike for ongoing cardio exercise. We are looking into buying one used. They are quite expensive. But if we can find a good deal, it may be a possibility. I'm also supposed to walk around the house wearing ankle weights to build up leg strength. We'll see how that goes.
He's changing my dose of Midodrine a bit. We're going to try for higher doses with breakfast and lunch to see if I can be active earlier in the day. Usually, I cannot walk around until after dinner pills.
Finally, he wants me to add a couple of supplements. He wants me to be taking D3 in liquid form instead of solid form. Also, I'm supposed to look for a flavored liquid fish oil supplement. That sounds absolutely disgusting to me, but I guess I could try it. (I'm particularly picky, so I'm really not sure if it will work out...)
Upcoming Appointment with Dr. Bolognese 6/18/2010
I have an appointment set to see Dr. Bolognese in New York. Here is what I know about it:
The surgical committee did NOT deny my ICT (Invasive Cervical Traction) because of bone density. They did not believe there was enough evidence showing I was a good candidate for ICT.
So, protocol states that to qualify for ICT, I need to have a consultation at TCI (The Chiari Institute) with new imaging and new testing showing that I have symptoms of cranio-cervical instability/cranial settling.
After the appointment, the surgical committee will vote on ICT again.
If they determine me to be a candidate, I will have ICT.
If the ICT is positive, the surgical committee will vote on surgery.
If they determine me to be a candidate, I will have the cranio-cervical fusion revision.
It's a TON of red tape, but it's the only way that I will have this surgery. And it's the only way that they can be absolutely certain that I need this surgery, and that this surgery will help me.
So, this is the way it needs to be done.
It's a long, long, long road since that first surgery in 2002.
This time, I'm hoping to recover from surgery in time to have my wedding in the summer of 2011, whether or not I have hair!
I don't quite know how to explain what happened at this appointment. It didn't go well. It felt like an interrogation, actually. First, she asked if my surgeons were satisfied with my recent DEXA scans. I told her that I wasn't sure, but I thought that they wanted me to continue on the medication, since I am still in the range of Osteopenia. She said that this was ridiculous, and with any other patient, we would be celebrating right now. She said that she would not renew my prescription for Forteo any longer, because my bones are strong enough as they are, and no reputable surgeon would require them to be any denser. The interrogation began. She started asking me questions about the reasoning for each of my surgeries and what improvements I saw with each one. Then she questioned why I was having my current surgery. She told me she thought I should consider if I really needed the surgery, and getting a different surgeon. At the very least, she thought I should see a neurosurgeon that she recommends for a second opinion...a neurosurgeon that doesn't even specialize in Chiari, much less cranio-cervical instability and fusions. Before I could even ask her the rest of my questions, she walked out of the appointment, not to return. It was completely condescending and rude. I felt like I'd been slapped across the face. At the same time, I wasn't surprised. I've been through all of this before. It's just been a while.
I did learn one positive thing at this appointment: I asked her if my salt intake was affecting my bones, considering I take salt tablets regularly, so I get more than the average recommended amount. She said that all of my tests showed normal amounts of sodium in 24-hour urine samples, and I don't need to worry about my salt intake at all. YAY!!! My body simply metabolizes much more salt in a day than a normal person, so the salt doesn't leach calcium from my bones. So, as long as I don't take more than I feel I need, I'm fine. I know I was taking 5-6 tablets a day when I had those tests done. So that should be a safe amount for me.
I am not certain if I will return to this endocrinologist. I may need to find a new one to prescribe Forteo, which I know won't be easy, from experience. But I will wait for now.
Appointment with Dr. Grubb 4/14/2010
My appointment with Dr. Grubb was excellent.
He is unhappy for me that I need another surgery, but he is in support of the surgery, and expects that I will see some improvement in POTS symptoms from the surgery. It seems we have come to the understanding that my POTS symptoms will never be cured. But he says that if the surgery helps, then the symptoms will be easier to manage with medications.
Surgery recovery is expected to cause another large setback in POTS symptoms. There is simply nothing to do about that. But if I am struggling a lot, I should consider contacting him. Perhaps to consider IV fluids to get me through the rough time.
Exercise is still Dr. Grubb's number one concern. He suggested a recumbent bike for ongoing cardio exercise. We are looking into buying one used. They are quite expensive. But if we can find a good deal, it may be a possibility. I'm also supposed to walk around the house wearing ankle weights to build up leg strength. We'll see how that goes.
He's changing my dose of Midodrine a bit. We're going to try for higher doses with breakfast and lunch to see if I can be active earlier in the day. Usually, I cannot walk around until after dinner pills.
Finally, he wants me to add a couple of supplements. He wants me to be taking D3 in liquid form instead of solid form. Also, I'm supposed to look for a flavored liquid fish oil supplement. That sounds absolutely disgusting to me, but I guess I could try it. (I'm particularly picky, so I'm really not sure if it will work out...)
Upcoming Appointment with Dr. Bolognese 6/18/2010
I have an appointment set to see Dr. Bolognese in New York. Here is what I know about it:
The surgical committee did NOT deny my ICT (Invasive Cervical Traction) because of bone density. They did not believe there was enough evidence showing I was a good candidate for ICT.
So, protocol states that to qualify for ICT, I need to have a consultation at TCI (The Chiari Institute) with new imaging and new testing showing that I have symptoms of cranio-cervical instability/cranial settling.
After the appointment, the surgical committee will vote on ICT again.
If they determine me to be a candidate, I will have ICT.
If the ICT is positive, the surgical committee will vote on surgery.
If they determine me to be a candidate, I will have the cranio-cervical fusion revision.
It's a TON of red tape, but it's the only way that I will have this surgery. And it's the only way that they can be absolutely certain that I need this surgery, and that this surgery will help me.
So, this is the way it needs to be done.
It's a long, long, long road since that first surgery in 2002.
This time, I'm hoping to recover from surgery in time to have my wedding in the summer of 2011, whether or not I have hair!
Monday, April 12, 2010
Exercise and Doctor's visit
First, I have been exercising regularly (but not quite daily) since March 1st. It has been pure torture, to be honest. I wish I had a gym available to me, but I certainly can't drive to one right now, and I don't belong to a gym, much less one that's open at 10:00 at night, and I don't have a personal valet to drive me to one, anyway. So I'll just have to deal with that. That means that I don't have a recumbent bicycle for cardio (or the seated elliptical trainer from PT). So, I have two options, depending on the day: take a brisk walk around the neighborhood or climb up and down the stairs in my house. I hate the stairs, but it feels like good exercise. My best is up and down 40 flights in about 20 minutes. It hurts my joints and I have to monitor my heart rate carefully. Every time my heart rate surpasses 170 bpm, I sit down. It happens pretty frequently. I break out a good sweat. I can't describe how horrible it feels, but it's what I'm trying right now.
That's cardio. For strength, I do weight lifting with a 5 and a 10 lb. weight, and I do various core exercises. They feel terrible, as well, but what are you gonna do?
Easter week, I was feeling quite a bit better. But I think it was just a fluke. I'm definitely back to where I was, if not worse. I can barely move most of the time. It seems like I save up all of my energy for exercise, and then I suffer for it the rest of the time.
There's a study taking place right now by a research team in Texas on POTS and exercise. It has been accepted for publication in the American Journal of Cardiology. I will link to the findings when they become available. From what I've learned so far, I may be going about this exercise all wrong. This team advises only sitting exercise...no standing, or you will "overtax your system and setback your recovery." Maybe that's what I'm doing right now. They advise the use of a rowing machine or a recumbent bicycle for cardio every other day. No walks! Certainly no stairs. That does sound more manageable. I will have to consider this more. I look forward to the research being published. For more information, read here: http://www.potsrecovery.com/
I have an appointment Wednesday in Toledo with Dr. Grubb to discuss my POTS treatment. I plan to ask him for his advice on exercise, although I know he generally advises leg strengthening the most. I don't have a leg press machine at home, so stairs are probably the best thing I've got, along with ankle weights. (I wish I could still go to the gym!) I don't have any other specific questions, so I will just see if there is anything else the good doctor has to offer at this time.
I have more on which to update, but it will have to wait until after this trip to Ohio.
That's cardio. For strength, I do weight lifting with a 5 and a 10 lb. weight, and I do various core exercises. They feel terrible, as well, but what are you gonna do?
Easter week, I was feeling quite a bit better. But I think it was just a fluke. I'm definitely back to where I was, if not worse. I can barely move most of the time. It seems like I save up all of my energy for exercise, and then I suffer for it the rest of the time.
There's a study taking place right now by a research team in Texas on POTS and exercise. It has been accepted for publication in the American Journal of Cardiology. I will link to the findings when they become available. From what I've learned so far, I may be going about this exercise all wrong. This team advises only sitting exercise...no standing, or you will "overtax your system and setback your recovery." Maybe that's what I'm doing right now. They advise the use of a rowing machine or a recumbent bicycle for cardio every other day. No walks! Certainly no stairs. That does sound more manageable. I will have to consider this more. I look forward to the research being published. For more information, read here: http://www.potsrecovery.com/
I have an appointment Wednesday in Toledo with Dr. Grubb to discuss my POTS treatment. I plan to ask him for his advice on exercise, although I know he generally advises leg strengthening the most. I don't have a leg press machine at home, so stairs are probably the best thing I've got, along with ankle weights. (I wish I could still go to the gym!) I don't have any other specific questions, so I will just see if there is anything else the good doctor has to offer at this time.
I have more on which to update, but it will have to wait until after this trip to Ohio.
Tuesday, March 30, 2010
Surgical Review Board Says....
No to Invasive Cervical Traction at this time.
I'm not surprised, nor am I disappointed, as I did not expect anything at this time. It's too soon, and I know it.
Oh, the wonders of having very low expectations and very little hope (for now).
Dr B, however, wrote to me directly, telling me that I should schedule a follow-up visit with him, now. I really don't understand why I would need to see him right now. He's the neuro-surgeon. I don't qualify for invasive traction or re-fusion at this time. So, why would he want me to fly to New York to meet with him right now? Maybe he's changing my surgical plan? I'm just not sure why I need this appointment right now. This is the waiting time. Waiting for the bones. Then, when I have a better DEXA scan, wouldn't that be a logical time to have a follow-up visit? When my body is ready for surgery?
I'm going to ask my nurse about the details of the visit, to see if she has any answers. But I suppose, if THE man wants to see me, then I probably want to see him, too. I don't have much else to do right now, to be honest. Really quite bored.
I'm not surprised, nor am I disappointed, as I did not expect anything at this time. It's too soon, and I know it.
Oh, the wonders of having very low expectations and very little hope (for now).
Dr B, however, wrote to me directly, telling me that I should schedule a follow-up visit with him, now. I really don't understand why I would need to see him right now. He's the neuro-surgeon. I don't qualify for invasive traction or re-fusion at this time. So, why would he want me to fly to New York to meet with him right now? Maybe he's changing my surgical plan? I'm just not sure why I need this appointment right now. This is the waiting time. Waiting for the bones. Then, when I have a better DEXA scan, wouldn't that be a logical time to have a follow-up visit? When my body is ready for surgery?
I'm going to ask my nurse about the details of the visit, to see if she has any answers. But I suppose, if THE man wants to see me, then I probably want to see him, too. I don't have much else to do right now, to be honest. Really quite bored.
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