My headache is about a 6 or 7 on the pain scale today. My baseline headache is a 4, so it's significantly worse today. It feels like a high pressure headache to me. The pressure is allover my head, and somewhat relieved by applying external pressure to my temples, cheekbones, or even the top of my head. I still seem to have temperamental intra-cranial pressure. It can't help that I take salt pills to keep my blood pressure up. Because many people will treat high pressure with a diuretic, which is the opposite. So I'm sure the excess sodium doesn't help my head pressure. Ugh.
Also, standing up for even a short time has been making me so winded.
And the nausea from sitting up continues.
These symptoms are getting noticeably worse. It really scares me. This is my spring break week, meaning my piano students are off from school, so I gave them (and myself) the week off from lessons. But it really makes me wonder how much longer I'll be able to pull this off. I work around 3 hours a day, 5 days a week, normally. At least I have been since last fall. But lately, I've had to cancel more frequently. And with symptoms worsening so quickly, I'm afraid I won't be able to teach at all much longer. I was hoping to last until May 15th, when I go to The Chiari Institute in New York. Then, I thought I could give the students the summer off and try to have any surgery done, then. But what if I can't do it? What if I can't wait until summer? And what if I don't recover in time to restart in the fall? I know: it wouldn't be the end of the world. I just wish it weren't so complicated.
Thursday, March 27, 2008
Wednesday, March 26, 2008
New Stuff posted
Just wanted you all to know that I've posted a new set of links to the right. They include two pages full of my medical explanations, in easy-to-understand terms. Also, I've included links to my medical history, including information on the surgery I've already had. I'll probably get that information transferred over here eventually. Also, I'll try to get some pictures up soon.
In bed another day/IBS problems
Well...I'm in bed again today...it's been the norm for so long. But sometimes it's all I can do.
My digestion has gotten worse the past few days. No matter what I eat, I'm getting horrible abdominal pain after each meal. I've been following the diet recommended by Heather at helpforibs.com for a year now. And it's a wonderful thing. But sometimes, it isn't quite enough. I take soluble fiber supplementation and peppermint oil pills and I have several prescriptions for stomach spasms. But some nights nothing helps but curling up with a heating pad. My digestive difficulties are most likely caused by my dysautonomia, as digestion is a function of the autonomic nervous system.
Also, it's gotten harder to sit up lately. The nausea becomes so strong and I feel a lump in my throat when I swallow. These are symptoms of cranio-cervical instability and retroflexed odontoid. I went to a movie with my mom yesterday, and I barely made it through. I tried wearing my old Aspen collar. Unfortunately, it doesn't really fit anymore, which is just another sign that my fusion didn't really hold.
This is in addition to my usual headache, which hasn't left me for many years. I got a short break after my first decompression surgery. After that, it just kept getting worse.
My digestion has gotten worse the past few days. No matter what I eat, I'm getting horrible abdominal pain after each meal. I've been following the diet recommended by Heather at helpforibs.com for a year now. And it's a wonderful thing. But sometimes, it isn't quite enough. I take soluble fiber supplementation and peppermint oil pills and I have several prescriptions for stomach spasms. But some nights nothing helps but curling up with a heating pad. My digestive difficulties are most likely caused by my dysautonomia, as digestion is a function of the autonomic nervous system.
Also, it's gotten harder to sit up lately. The nausea becomes so strong and I feel a lump in my throat when I swallow. These are symptoms of cranio-cervical instability and retroflexed odontoid. I went to a movie with my mom yesterday, and I barely made it through. I tried wearing my old Aspen collar. Unfortunately, it doesn't really fit anymore, which is just another sign that my fusion didn't really hold.
This is in addition to my usual headache, which hasn't left me for many years. I got a short break after my first decompression surgery. After that, it just kept getting worse.
Tuesday, March 25, 2008
New research articles posted
The new link I posted, under EDS sites (New Article...) has some really great information about a study done by Milhorat, Bolognese, Nishikawa, and Francomano. It explains that people with EDS and chiari have distinct changes in the position of brain structures upon upright posture. These changes result in lower brainstem compression and symptoms. This helps to explain why I need to lie down so much of the time.
In addition there are several new links under TCS sites that report on the outcome of tethered cord surgery for treatment of chiari. It's good to know that this information is being reported, and coming from multiple places. For example, a doctor in Barcelona has been successfully performing surgery on occult tethered cord.
Just in case you're interested in the newest information.
In addition there are several new links under TCS sites that report on the outcome of tethered cord surgery for treatment of chiari. It's good to know that this information is being reported, and coming from multiple places. For example, a doctor in Barcelona has been successfully performing surgery on occult tethered cord.
Just in case you're interested in the newest information.
Dos and Don'ts AND explanations from Dr.B
The following site has a great list of Dos and Don'ts for dealing with a person living with chiari. If people would read this page, maybe they'd have an easier time understanding my struggles.
Dos and Don'ts
Also Dr. B wrote an explanation of craniocervical instability in EDS patients, the incidence of TCS, and information about the use of Botox in the fusion surgery.
Dr. B on CCF
Dos and Don'ts
Also Dr. B wrote an explanation of craniocervical instability in EDS patients, the incidence of TCS, and information about the use of Botox in the fusion surgery.
Dr. B on CCF
Questions, Concerns, and Worries
I did work out again tonight, but I'm not feeling quite so confident...about anything. Yesterday was Easter, and amazingly, I was able to play the keyboard at both of the morning services, with just rest in between. Normally, I actually fall asleep and cannot be woken up to play. It makes it hard to decide if I should keep the job or not. I'm certainly not in it for the money. But I don't want to abandon everyone. But I'm not really capable of doing the job right now. Anyhow, I guess I got lucky yesterday. After services, I went right to bed for about 2 hours. Then, I went to lunch with the family, which I also made it through. Gus took me home a little early. I spent the next 24 hours in bed, many of them sleeping. So of course, I did eventually pay for my over-doing it. Luckily, tonight I made it to the gym. But I felt pretty awful afterward.
I saw someone at the gym who I've seen only a couple of times since high school. That made explaining about my continuing illness very complicated, considering I was at the gym. It's one of those moments where I actually feel like I'm lying or exaggerating about my illness, which is really not fair. As soon as I got home (barely), my symptoms were horrendous. And even while I was at the gym, I was watching my heart rate very carefully, as it tends to skyrocket with all of the upright activity. My trainer has helped me learn to exercise safely by mixing supine exercises with upright ones. I only really exert myself if my body is near horizontal. This makes it a little easier to handle. But it is still such a challenge.
I feel so lazy when I'm spending 90% of my time in bed. It's hard to explain the reason for this, even to people who know about my conditions and see me quite frequently. I still get asked "Why don't you get out of bed?", "Maybe it would help to get dressed and ready", etc. It just makes me feel guilty for being lazy, when really, I don't feel like my body gives me a choice. Believe me, lying in bed is boring. This is not the life I want. But it is the life I have.
I've been questioning surgery a lot lately, after talking to some people about less successful outcomes to these operations. What if I get worse? So many things could go wrong with such invasive surgeries. I've dealt with recovery before, and I know that things don't always go as expected. For example, the muscle spasms in my neck and shoulders haven't ended since my fusion. What if the tethered cord surgery creates permanent lower back pain? It seems like a definite possibility. And if it doesn't help other problems, it certainly wouldn't be worth it. But on the other hand, it could prevent the deterioration of my bladder control.
Well, my mind has been so busy. I feel like I never really think about anything else. Because it is such a huge decision on my shoulders. Maybe I'll feel better after talking to Dr. B. If only May 15th would come a little sooner...
I saw someone at the gym who I've seen only a couple of times since high school. That made explaining about my continuing illness very complicated, considering I was at the gym. It's one of those moments where I actually feel like I'm lying or exaggerating about my illness, which is really not fair. As soon as I got home (barely), my symptoms were horrendous. And even while I was at the gym, I was watching my heart rate very carefully, as it tends to skyrocket with all of the upright activity. My trainer has helped me learn to exercise safely by mixing supine exercises with upright ones. I only really exert myself if my body is near horizontal. This makes it a little easier to handle. But it is still such a challenge.
I feel so lazy when I'm spending 90% of my time in bed. It's hard to explain the reason for this, even to people who know about my conditions and see me quite frequently. I still get asked "Why don't you get out of bed?", "Maybe it would help to get dressed and ready", etc. It just makes me feel guilty for being lazy, when really, I don't feel like my body gives me a choice. Believe me, lying in bed is boring. This is not the life I want. But it is the life I have.
I've been questioning surgery a lot lately, after talking to some people about less successful outcomes to these operations. What if I get worse? So many things could go wrong with such invasive surgeries. I've dealt with recovery before, and I know that things don't always go as expected. For example, the muscle spasms in my neck and shoulders haven't ended since my fusion. What if the tethered cord surgery creates permanent lower back pain? It seems like a definite possibility. And if it doesn't help other problems, it certainly wouldn't be worth it. But on the other hand, it could prevent the deterioration of my bladder control.
Well, my mind has been so busy. I feel like I never really think about anything else. Because it is such a huge decision on my shoulders. Maybe I'll feel better after talking to Dr. B. If only May 15th would come a little sooner...
Monday, March 17, 2008
Bring It On
I'm feeling proud of myself, because I've been working out hard with an amazing trainer. I barely ever miss it. No matter what else is going on, I work out once a week. By doing this for five months, I've been able to decrease my body fat by 5% and build a lot of muscle. Even though I lay in bed most of the day, I've still been able to improve the shape I'm in significantly. I can do some aerobic workout and a decent amount of weightlifting.
This makes me feel very optimistic about my body's ability to heal from surgery this time around. Last time I had surgery, I weighed about 90 lbs and was essentially bed-bound. Needless to say, recovery was incredibly slow. I had to rebuild my entire body. But this time, my body is strong, so I should be able to recover much more quickly.
It's nice to have a reason to be hopeful. I still dread the surgery and the pain, but I believe this time will be easier than last. So I say, bring it on.
This makes me feel very optimistic about my body's ability to heal from surgery this time around. Last time I had surgery, I weighed about 90 lbs and was essentially bed-bound. Needless to say, recovery was incredibly slow. I had to rebuild my entire body. But this time, my body is strong, so I should be able to recover much more quickly.
It's nice to have a reason to be hopeful. I still dread the surgery and the pain, but I believe this time will be easier than last. So I say, bring it on.
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