Announcing my Candidacy
Continued from part one...
After talking with the neurologist and then the neurosurgeon, I was informed that I was a candidate for detethering surgery. I was handed a card with a number I could call to schedule the surgery.
Wow. After years of searching for a diagnosis, and then being told repeatedly that there was no treatment or cure, suddenly someone thinks they can help.
I had been training myself not to get my hopes up, so I'd be disappointed when I was, again, told I could not be helped. I was working hard on accepting a slow neurological decline and a life of constant pain. Now, suddenly I was given a chance at stabilizing my condition. With that chance comes the weight of a decision that I can't make easily; should I have surgery, before my spinal cord is damaged much more, or should I not take the risk and be thankful for the function that I have now.
Tuesday, October 30, 2007
Monday, October 29, 2007
Trip to the Chiari Institute: Part One: Miscommunication
Clarification: this article is being misquoted as saying that I went ahead with the surgery and was positive about it. One, I did not have surgery at TCI due to these obvious issues with them. Two I'm not positive about the outcome of this surgery in my case even though I had another excellent surgeon do it. That other surgeon has a much less invasive approach so if anything my results should have been better. However, the surgery did not live up to the hugely positive claims made by TCI. I was left in much the same condition as before.
Introduction: The Chiari Institute
As of today, 2007, there are only a hand full of neurologists and neurosurgeons in the United States who specialize in Syringomyelia (SM), Chiari Malformation, and related disorders. In Long Island, New York, there is a center, called The Chiari Institute, which specializes in treating these disorders. The Chiari Institute is so well known among Chiari and SM patients, that people just call it TCI, and you know what they are talking about.
The good thing about TCI is that they know these diseases, and they have a lot of practice with their specific surgical treatments. On the other hand, they are very busy and it takes a lot of patience to get an appointment.
Why I Went to TCI
I decided to go to The Chiari Institute because I had met and talked to two physicians who worked there, at the ASAP medical conferences over the last two years. In specific, I talked with Dr. B, who was a neurosurgeon that recognized my symptoms as a possible case of Occult Tethered Cord Sydrome (TCS).
I had been looking for the cause of my SM, and no experts so far were able to explain it (beyond conjecture that it is idiopatic, congenital, and uncurable). When Dr. B had me walk on my heels, and had my wife pull on my legs, the symptoms it elicited were a perfect match.
Thus, I decided to fly myself and my wife out to New York to meet with Dr. B.
Miscommunication: We've changed your Neurosurgeon
We arrived at TCI early on October 22, 2007. After sitting down with a nurse and giving a detailed symptom and treatment history, she told us that I will not be seeing Dr. Bolognese, because he is out of town for a conference.
What?
This was after I explicitly said that I was coming exactly to see this physician, and that I was to know ahead of time if this was going to be a problem. I even had confirmation via email that I was going to see Dr. B. I had just spent thousands of dollars to come to TCI and get fresh MRIs, so we were not happy about this.
Introduction: The Chiari Institute
As of today, 2007, there are only a hand full of neurologists and neurosurgeons in the United States who specialize in Syringomyelia (SM), Chiari Malformation, and related disorders. In Long Island, New York, there is a center, called The Chiari Institute, which specializes in treating these disorders. The Chiari Institute is so well known among Chiari and SM patients, that people just call it TCI, and you know what they are talking about.
The good thing about TCI is that they know these diseases, and they have a lot of practice with their specific surgical treatments. On the other hand, they are very busy and it takes a lot of patience to get an appointment.
Why I Went to TCI
I decided to go to The Chiari Institute because I had met and talked to two physicians who worked there, at the ASAP medical conferences over the last two years. In specific, I talked with Dr. B, who was a neurosurgeon that recognized my symptoms as a possible case of Occult Tethered Cord Sydrome (TCS).
I had been looking for the cause of my SM, and no experts so far were able to explain it (beyond conjecture that it is idiopatic, congenital, and uncurable). When Dr. B had me walk on my heels, and had my wife pull on my legs, the symptoms it elicited were a perfect match.
Thus, I decided to fly myself and my wife out to New York to meet with Dr. B.
Miscommunication: We've changed your Neurosurgeon
We arrived at TCI early on October 22, 2007. After sitting down with a nurse and giving a detailed symptom and treatment history, she told us that I will not be seeing Dr. Bolognese, because he is out of town for a conference.
What?
This was after I explicitly said that I was coming exactly to see this physician, and that I was to know ahead of time if this was going to be a problem. I even had confirmation via email that I was going to see Dr. B. I had just spent thousands of dollars to come to TCI and get fresh MRIs, so we were not happy about this.
Thursday, October 25, 2007
Part Two: Treating Neuropathic Pain Without Cognitive Deficit
As promised, I will review some of the medications I have tried for treating my neuropathic (nerve) pain associated with syringomyelia. Although it varies a lot from person to person, the type of pain I experience may be similiar to that which people with Chiari Malformation, Tethered Cord Syndrome, post-herpetic or diabetic neuralgia might experience.
I'll stress again that each person responds differently to medication, and that diet and exercise are the first line of defense in managing such an illness.
Here are the medications I've tried, in chronological order, along with a final grade (A-F) as to how helpful they were overall.
Paxil: F
When I originally started having neurological symptoms such as numbness and weakness, my primary care physician (PCP) stated that I must just be depressed, and wanted me to try taking Paxil.
Pain Relief: Paxil did not help my pain levels, although I took it for about a year.
Motivation: Paxil made me sleepy, ambivalent about life, and very unmotivated.
Cognition: If anything, my concentration was worse with Paxil.
Other Thoughts: Paxil did not help with my pain and other neuro. symptoms. It did make me occasionally manic, which was a bit fun I suppose. It lessened my libido, IIRC.
Vicodin: C
Narcotics are not very helpful with neuropathic pain. They do help you sleep, and can be useful occasionally to take a break from overwhelming discomfort. Vicodin midly worsened my concentration, and made me feel a little depressed if I took it for more than a day or two.
Neurontin (Gabapentin): B
Pain Relief: Neurontin was very helpful when I first started taking it. I could concentrate much better at work because it reduced my pain significantly. Your body seems to get used to it, however, even if you increase the dose. It feels like it still helps, but not as much as when I first started it.
Motivation: Not much of an effect, slightly sleepier.
Cognition: Tolerable, but seems to hurt short term memory a bit.
Other Thoughts: Very addictive in that withdrawls are painful. It is an anti-seisure drug, and if you quit taking a large amount quickly, you can actually induce seisures, or so I've heard. When I forget to take a dose before bed, I have crazy nightmares and sweats.
SNRIs: Effexor and Cymbalta: C-
I tried both Effexor and Cymbalta, which are similar anti-depressant drugs also used for treating neuropathic pain. One theory is that chronic pain causes depletion of certain neurotransmitters, and these reuptake inhibitors help restore the balance, making you feel better.
Pain Relief: Cymbalta was great for my pain, but I was an idiot, when I wasn't vomiting.
Motivation: These drugs made it a struggle to get out of bed and stay focused-- similiar to how I felt on Paxil, but with some pain relief at least.
Cognition: Wee! Happy times! I'm stupid! For me, these drugs made it hard to concentrate on work.
Other Thoughts: Effexor made me vomit when I started or increased a dose. I discontinued it in one week. When I tried Cymbalta, I added an anti-nausea drug, which at least let me avoid vomiting. I hung in there for a good month, and had pain relief. Even after the nausea faded, I still couldn't concentrate on work, so I quit taking it. If I didn't have a job, I'd try it again.
TCA #1: Nortriptyline: D
Nortriptyline is an old, second-generation Tricyclic Antidepressant that has found some off-label use for chronic pain and neuralgia.
Pain Relief: I didn't notice much pain reduction from Nortriptyline, which might have changed if I took it longer or at a higher dose.
Motivation: This one made me sleepy and less motivated.
Cognition: I felt foggy and less alert on Nortriptyline.
Other Thoughts: You need to take these drugs for some time (say, a month) before noticing their full impact. After trying this one for two weeks, we knew that the sleepiness would be untolerable, even if I did attain pain relief. I decided to try Desipramine instead.
TCA #2: Desipramine: B- ?
Desipramine works better for me than Nortriptyline. After working up to a 50mg dose over five weeks, I seem to be noticing a reduction in pain complaints. The side effects are tolerable: dry mouth, constipation, trouble sleeping (for a couple days any time I increase the dose), slight fogginess. Desipramine seems to have the energizing feeling I felt with the SNRIs (Cymbalta, etc.) without the sleepiness and ambivalence I experience on SRIs (Paxil, also SNRIs, Nortriptyline).
Pain Relief: Seems to be a bit better at five weeks, 50mg.
Motivation: Seems unaffected.
Cognition: A bit foggy/air-headed, but tolerable.
Other Thoughts: Everybody reacts differently to these medicines. This one works OK for me so far.
More to come
I finish this article when I get time.
I'll stress again that each person responds differently to medication, and that diet and exercise are the first line of defense in managing such an illness.
Here are the medications I've tried, in chronological order, along with a final grade (A-F) as to how helpful they were overall.
Paxil: F
When I originally started having neurological symptoms such as numbness and weakness, my primary care physician (PCP) stated that I must just be depressed, and wanted me to try taking Paxil.
Pain Relief: Paxil did not help my pain levels, although I took it for about a year.
Motivation: Paxil made me sleepy, ambivalent about life, and very unmotivated.
Cognition: If anything, my concentration was worse with Paxil.
Other Thoughts: Paxil did not help with my pain and other neuro. symptoms. It did make me occasionally manic, which was a bit fun I suppose. It lessened my libido, IIRC.
Vicodin: C
Narcotics are not very helpful with neuropathic pain. They do help you sleep, and can be useful occasionally to take a break from overwhelming discomfort. Vicodin midly worsened my concentration, and made me feel a little depressed if I took it for more than a day or two.
Neurontin (Gabapentin): B
Pain Relief: Neurontin was very helpful when I first started taking it. I could concentrate much better at work because it reduced my pain significantly. Your body seems to get used to it, however, even if you increase the dose. It feels like it still helps, but not as much as when I first started it.
Motivation: Not much of an effect, slightly sleepier.
Cognition: Tolerable, but seems to hurt short term memory a bit.
Other Thoughts: Very addictive in that withdrawls are painful. It is an anti-seisure drug, and if you quit taking a large amount quickly, you can actually induce seisures, or so I've heard. When I forget to take a dose before bed, I have crazy nightmares and sweats.
SNRIs: Effexor and Cymbalta: C-
I tried both Effexor and Cymbalta, which are similar anti-depressant drugs also used for treating neuropathic pain. One theory is that chronic pain causes depletion of certain neurotransmitters, and these reuptake inhibitors help restore the balance, making you feel better.
Pain Relief: Cymbalta was great for my pain, but I was an idiot, when I wasn't vomiting.
Motivation: These drugs made it a struggle to get out of bed and stay focused-- similiar to how I felt on Paxil, but with some pain relief at least.
Cognition: Wee! Happy times! I'm stupid! For me, these drugs made it hard to concentrate on work.
Other Thoughts: Effexor made me vomit when I started or increased a dose. I discontinued it in one week. When I tried Cymbalta, I added an anti-nausea drug, which at least let me avoid vomiting. I hung in there for a good month, and had pain relief. Even after the nausea faded, I still couldn't concentrate on work, so I quit taking it. If I didn't have a job, I'd try it again.
TCA #1: Nortriptyline: D
Nortriptyline is an old, second-generation Tricyclic Antidepressant that has found some off-label use for chronic pain and neuralgia.
Pain Relief: I didn't notice much pain reduction from Nortriptyline, which might have changed if I took it longer or at a higher dose.
Motivation: This one made me sleepy and less motivated.
Cognition: I felt foggy and less alert on Nortriptyline.
Other Thoughts: You need to take these drugs for some time (say, a month) before noticing their full impact. After trying this one for two weeks, we knew that the sleepiness would be untolerable, even if I did attain pain relief. I decided to try Desipramine instead.
TCA #2: Desipramine: B- ?
Desipramine works better for me than Nortriptyline. After working up to a 50mg dose over five weeks, I seem to be noticing a reduction in pain complaints. The side effects are tolerable: dry mouth, constipation, trouble sleeping (for a couple days any time I increase the dose), slight fogginess. Desipramine seems to have the energizing feeling I felt with the SNRIs (Cymbalta, etc.) without the sleepiness and ambivalence I experience on SRIs (Paxil, also SNRIs, Nortriptyline).
Pain Relief: Seems to be a bit better at five weeks, 50mg.
Motivation: Seems unaffected.
Cognition: A bit foggy/air-headed, but tolerable.
Other Thoughts: Everybody reacts differently to these medicines. This one works OK for me so far.
More to come
I finish this article when I get time.
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