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Old 11-08-2008, 06:48 AM   #1
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lydia72 HB User
Question small syrinx lots of symptoms

I am a 37 year old female who has been suffering with syringomyelia for the last two years. My syrinx is at the c3-4 level to the T-1 level, with the worst being at the c6-7 level. There is so much uncertainty with syrinx's. Most doctors do not believe that a small syrinx can cause pain, but I have read about so many other people who have come up against the same walls. My symptoms are, headaches, neck pain both burning and throbbing pain, swallowing difficulties, numbness in hands arms and legs, and a stabbing burning pain between my shoulders that comes around to my chest. I am on pain meds, but am wondering if anyone else is suffering from this and what they have found to be helpful. I am not a candidate for surgery at this time and don't know that I would want to have it anyway. The days that are really bad, yes I wish someone would cut me open and take away the pain, but there is so much uncertainty as to the outcome of surgery as well. Some people have the surgery and still get no relief of symptoms. This is the worst hell to live through with so much pain and no sure answers and doubtful doctors.

 
Old 12-10-2008, 07:22 AM   #2
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Join Date: Jan 2005
Location: New Jersey
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trigal HB User
Re: small syrinx lots of symptoms

Hello There,

I have chiari and a "small" cervical syrinx with lots of symptoms too.... I can have good days, weeks even months and then BOOM - the syrinx symptoms just flare up. I have been in a flare up stage for the past 2 weeks and have not been able to work much (I am a writer and Psychologist - can I say that?) and have difficulty managing normal daily activities. Historically, I am a very active, healthy, athletic person and this is just so difficult. I went to the grocery store yesterday to just try to feel productive (oh gee..) and was crying by the time I got back to the car. I have very bad neck pain, of course, shooting and burning pain into my traps, shoulders and in between my shoulder blades, weakness in my upper arms and pins and needles in my hands and fingers. I am use to running marathons and doing triathlons and now going to the store feels like a marathon. I am on meds right now to try to manage the pain and I HATE feeling like a med head What seems to help me is Celebrex and Valium at the therapeutic dose for muscle relaxer. I cannot tolerate any other muscle relaxers but Valium does seem to help with the secondary spasms I get. I know there really is no good medication managment for a syrinx - but anything that helps with the pain and any secondary efffects such as muscle spasms and or trigger points might help take the edge off. I get something called ART to help relieve the deep tissue pain that I get - of course all secondary to the syrinx...

Like you, for me it does not seem to matter that my syrinx is "only"10mm. Because mine is the result of the backup of CSF from blockage from the chiari I am a candiate for surgery and am heading to the Chiari Institute next month to disucuss this option. The hope would be the decompression would eventually help the syrinx to go away or at least not get worse. Just know you are not alone in feeling like this - even though you may feel that way. I just try on these very bad days to do one or two things that connects me with that healthy part of myself and keeps me inspired to get through the day. Maybe I cannot hike up that trail right now but I can drive my car to the top and still appreciate the beauty of nature. I know.......tough to have a positive attitute....but sometimes that is all we have in our control. I wish you the best.

 
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Old 08-18-2011, 01:26 AM   #3
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Join Date: Oct 2010
Location: Sola, Rogaland, Norway
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beriksen2106 HB User
Re: small syrinx lots of symptoms

Quote:
Originally Posted by lydia72 View Post
I am a 37 year old female who has been suffering with syringomyelia for the last two years. My syrinx is at the c3-4 level to the T-1 level, with the worst being at the c6-7 level. There is so much uncertainty with syrinx's. Most doctors do not believe that a small syrinx can cause pain, but I have read about so many other people who have come up against the same walls. My symptoms are, headaches, neck pain both burning and throbbing pain, swallowing difficulties, numbness in hands arms and legs, and a stabbing burning pain between my shoulders that comes around to my chest. I am on pain meds, but am wondering if anyone else is suffering from this and what they have found to be helpful. I am not a candidate for surgery at this time and don't know that I would want to have it anyway. The days that are really bad, yes I wish someone would cut me open and take away the pain, but there is so much uncertainty as to the outcome of surgery as well. Some people have the surgery and still get no relief of symptoms. This is the worst hell to live through with so much pain and no sure answers and doubtful doctors.
I am in the same boat, living in a country with no specialists in this area. Some believe it to be a serious problem some don't. I know that for me it is a major problem causing a multitude of problems. Lots of severe pain, spasms, loss of feeling in limbs, hands feet, back and face. Cramps, stiffness and mild spacticity. I have been checked out for MS and ALS. I am really fed up with doctors with different opinions and believing they can specialize in thousands of diseases. There are as far as i know of 2 -5 SM specialists in Europe and none of them in Norway.

 
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