Symptom progresion?

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Symptom progresion?

Postby robertsmanta » Fri Feb 17, 2012 12:09 pm

I recently learned that I have a syrinx. For about 24 months, (it started while I was serving in Iraq) I experienced tingling sensations in my arms, neck, and head. About three months ago, I began to have some issues with mental fogginess and occasional minor shaking of my fingers. In the past month, I began to experience a range of other symptoms. It began with a more frequent rate of mental fogginess episodes (I couldn’t think/process that well). Then I noticed my fingers would become stiffer in both hands (with occasional instances in which I would lose motion of my fingers), then I began to have pretty intense headaches. This has been followed by my legs beginning to have the tingling sensation, and there’s been a change in sensory perception in my feet, arms, and hands. I've also experienced changes in sensory perception/control over facial muscles. Of late, I've begun to experience pain in my arms, fingers, toes, neck and ears. Not intense, but noticeable and distracting. I find myself feeling funny...like I'm losing control of my nervous system. I feel like a hypochondriac. It is happening so rapidly (really over the last four weeks), that I'm not sure what is real vs what I'm convincing myself of. I've never had health issues before; this is all new to me.
I guess my main question focuses on the rate of progression. I've read that syringomyelia eventually will lead to paralysis in the extremities, which is not likely to ever be reversible. My doctor referred me to a neurosurgeon, but the earliest appointment is not for another four weeks. Obviously I'm not looking for a medical opinion here, just advice based on personal experience...given the large change in symptoms over the past four weeks, should I be worried about increased chances of irreversible damage prior to my appointment? Or, do the more damaging symptoms generally take longer than a couple of months to manifest? Due to the rarity of this disorder, I can’t seem to find answers or advice from anyone I know.
Thanks!
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Re: Symptom progresion?

Postby gunflint » Fri Feb 17, 2012 7:53 pm

First of all welcome, and thank you for your service to our country. Progression of symptoms, severity of symptoms, diversity of symptoms etc are different in all of us. I'm glad that your GP has recommended a NS. Before you go find out what experience the NS has in SM. Also if you haven't read about it on here yet there is a study that the National Institute of Health is doing on syringomyellia. It may be worth your while to check into applying to them to be a study participant. Don't get too hung up on paralysis or long term outcomes. You have a long journey ahead of you. Your symptoms could stop progressing at anytime. No one knows what will happen or to who it will happen to. I wish you well.
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Re: Symptom progresion?

Postby razzle » Sat Feb 18, 2012 3:25 am

I agree with Gunflint . I was diax in 1999 with chiari and a syrinx . I had the decompression surgery and still have the syrinx .It did not shrink or get bigger .. and that has been 12 yrs ago......surgery was not needed on my syrinx because there was no blockage , I just treat with pain meds.... R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Symptom progresion?

Postby airsense00 » Mon Feb 20, 2012 4:50 pm

From what I have heard the progression is slow but steady, although yes different in everyone with periods of no new symptoms. But once nerve damage is done it doesn't usually come back. I would avoid any pressure to your spine till you see a doc. Definetely you want to see a Neurosurgeon that has experience with chiari.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
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Re: Symptom progresion?

Postby Syrinx810 » Thu Feb 23, 2012 3:40 pm

My symptoms started a few years ago. I will tell you that support is key. I just joined site today and have a cervical syrinx no chiari. I wish you the best on getting evaluated but if it doesn't go your way don't give up. I am so thankful it is me and not my child. Because I have been to numerous doctors locally and out of state. The expert reversed the decisions of my primary doctors so now after 3 years I'm at square 1 again. I have very similar symptoms but also visual and balance issues and chronic pain. I was told surgery not option and only pain management. But also being a middle aged man in construction there are alot of issues and symptoms that overlap. Your syrinx may or may not be the issue. There are alot of tests and alot of different opinions. Read the articles, read the posts and keep an open mind.

I'm still Having a hard time, unable to work and find quality care, but I won't give up.

Even being new to this group I guarantee you will find help here if nowhere else. Thank you for your service and don't worry about all the scary stuff, easy said I know but the stress will cause more problems.
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Re: Symptom progresion?

Postby robertsmanta » Fri Feb 24, 2012 11:04 am

Thank you all for the info. That was really reassuring. I feel like I'm entering into a more normalzied phase right now.
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