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New to forum; diagnosis chiari I and syringomyelia C4-T9; chronic pain

Hello all, and thank you for reading. I am new to the site and joined today realizing it was about darn time I talk to some other sufferers of syringomyelia having nobody I know in person who can relate to my condition.

Me: I am a 20 year old male student from Minnesota. I have Chiari I and syringomyelia C4-T9; I was diagnosed two years ago after the development of the syrinx began to cause symptoms in my right arm of reduced nerve sensation and pain after going for long-distance runs. The pain grew steadily over the years and I underwent decompression surgery at the end of July 2011. Today I still suffer chronic pain and would like to hear from others about their situations. I have a few burning questions that I would like to ask:

1) Are there others whose syrinxes lean towards one side of the spine and affect their bodies asymmetrically? The loss of sensation and pain only occurred in my right arm and MRI scans show the syrinx leaning towards that side of my body. My left arm has no symptoms. I am right-handed and the damage to my sensation causes me frequent carpal tunnel (from being unable to correct my posture due to not noticing discomfort), burns and cuts that I do not feel, etc. I suffer chronic pain spasms in my right arm at sporadic times and a constant tingling/numbness otherwise. The most severe of spasms have landed me in the hospital unable to control myself from screaming and flailing in pain. It's *only* in my right arm; my left arm is as good as new. Does anybody else experience asymmetrical symptoms?

2) I used to be a long-distance cross-country runner and would notice that the pain spasms I suffered would be significantly worse for the 24-36 hour period following a run of more than a half hour or so. As far as I can tell, there is no other specific trigger to the pain and no apparent pattern in spasms; I can have three spasm episodes in three days just as easily as weeks on end with no pain, and my behavior patterns (besides running) stay consistent. Doctors have told me that my running career is over for life. I can do any other sport without consequence and am a frequent cross-country skiier, biker, dancer, and even can use elliptical machines at the gym. Pain spasms still occur without me having run in a year and a half. My pain over the past few days has been very bad and was at screaming level, which has not happened for a few months. I just have labeled long-distance running as a trigger that will DEFINITELY cause pain for an extended period, and very severe at that. Does anybody else have extremely defined triggers for pain symptoms?

3) Are there folks who have recovered from their symptoms many, many years after surgery? I had cranial decompression in July 2011 and am still suffering great pain. I've noticed some abatement in the severity of the pain when it does occur and this has happened gradually over the past year and a half. My doctors said it would take at least six months to two years for my nerves to start to heal...if they would at all. I am thinking that it may be years and years to happen...is anybody familiar with a very delayed recovery post-surgery?

Thank you so much for the lengthy read. I would love to get a chance to hear your stories and reach out to other patients. I have nobody to relate to in my life and I feel so alone in moments like my spasm episode today. There is no way to explain my spasms to anybody that hasn't suffered severe nerve pain. I would like to hear some stories about dealing with nerve damage and adaptation to loss of sensation. I can't work in food service any longer due to the insane amounts of cuts and burns I would acquire without noticing and I need to moderate myself performing repetitive activities like typing, playing keys and writing. It seems so hopeless when my right hand is crippled from carpal tunnel that I don't notice until too late. Syringomyelia is quite the encumbrance in daily life and I break down often wishing I could have the normal life of my friends.

Thanks again for the read; I am eager to hear from you folks
1 Responses
620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Many with Chiari alone can have the asymmetrical symptoms....it is a matter of which nerves r being compressed.

I did not have a syrinx prior to my decompression....but, I can tell u that some  with a syrinx can develop perm nerve damage....ur Dr should have told u post op if that was an issue.

Have u been back to ur NS to express ur concerns? or a post op MRI?

And lastly did they check u for related issues ....since u continue to have pain there could be something else going on.

As I said I do not have a syrinx, but I  do have tethered cord and Ehlers-Danlos as well and I did have a decrease in symptoms and I am post op 4 yrs this May....

Again, I still have some issues and they can come and go, just like b4 surgery..symptoms can cycle due to stress or weather....or our activities.

I would strongly suggest seeing ur PCP or NL and have some testing done.
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