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  • Syringomyelia

    I suffer from degenerative disk disease and have been diagnosed with a syrinx in my spinal cord after an injury a few years ago. My neck pain was so bad that last year I had a fusion and corpectomy (in the same area where my syrinx is located.) My neurologist was quite upset that my orthopedic surgeon put a plate in my neck and says that now there is no way to monitor the growth of my syrinx with the exception of keeping an eye out for symptoms. After a year out of surgery my neck pain is now coming back again. I am having terrible headaches and have started sweating for no reason at all - so badly that people stop me (in stores, restaurants and family gatherings) and ask if I am ok. Should I be concerned that this may be a sign of my syrinx enlarging?

  • #2
    I would certainly be concerned enough that I would call and see my neurologist. The sweating and pain are the pieces that concern me the most and could be signs that the syrinx is increasing in size.

    Try to get a hold of him ASAP. Please let me know how it works out.

    CKF
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      I suffer from a syrinx also

      Hi Tayloka,

      I too suffer from a syrinx. I had four surgeries (shunt placement) in two years due to my syrinxs continuous growth. My syptoms were severe headaches, my neuropathic pain would get worse, and I would sweat on one side of my body above my injury level. If there is a way to get a NRI on your syrinx area, I would recommend it as soon as possible. If I can answer any questions for you, let me know. Good luck, and I hope all is well with your syrinx.

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      • #4
        OMG i am the same !
        i am one year post yesterday and got an MRI yesterday for the first time on my c-7 and there is a big sryinx. i have had bad headaches for the past 6 months and still do with insane sweating all last month. i had no idea it was because of the cyst until this past month. my doc. thinks the risk of infection with surgery is too risky and i should take muscle relaxers or massages. after reading the forum today i think i should push for removal with a duraplasty or shunt .

        what do i do?
        Don't cry because it is over, smile because it happened

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        • #5
          Originally posted by Steph P
          I had four surgeries (shunt placement) in two years
          Wow, me too!

          C.

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          • #6
            Would sweating only when lying down be a symptom of a syrinx?

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            • #7
              Originally posted by Clipper
              Would sweating only when lying down be a symptom of a syrinx?
              I would think it's more likely that is an indication of autonomic dysreflexia.

              C.

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              • #8
                Syringomyelia

                Thanks so much for your feedback everyone. It's nice to know there are so many people out there with the same problem as me that I can talk to and share my concerns. I will be calling my Neurologist as soon as his office opens this morning. I'll keep you posted. Many thanks!!

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                • #9
                  Lots of threads re syringomyelia on this board. Doing a search can bring up discussions of the recommended surgical treatment, which now apparently is collapsing the syrinx by untethering the cord whenever possible, as opposed to shunting. Of course, sometimes shunting may be the only option.

                  I keep an eye on this subject, even though docs have consistently told ne that that the hole in my cord from C-4 to C-6 is just that, a hole, which doesn't need any treatment.
                  Alan

                  Proofread carefully to see if you any words out.

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                  • #10
                    Some of the info is scary. I'm not up for another surgery, between my arthritis and my problems with my syrinx I have had surgery 9 times in the past 13 years, not to mention the floroscopic injections, mylograms and discogram. I did call my neurologist today and he wants to see me tomorrow afternoon, so I'll be heading up to Dartmouth Medical Center to hopefully hear him tell me there is nothing to worry about. (But I cannot stand this pain, these headaches and sweating like a person sitting in a sauna for 2 hours.) I'm trying to have a positive attitude, I guess it could be much worse.

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                    • #11
                      go to www.asap.org , this is a great site that will answer alot of your questions. I have SM/CM and had decompression surgery in 1999. Roz
                      SM/ACM Surgery in 1999

                      When the world says "give up"; hope whispers "try one more time"
                      -anonymous

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                      • #12
                        have you ever been checked for Chiari . these are the symptoms of that:
                        http://www.chiarione.org/symptoms.html
                        SM/ACM Surgery in 1999

                        When the world says "give up"; hope whispers "try one more time"
                        -anonymous

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                        • #13
                          Thanks Razzle. Yes, I've gone to that site many times and it is helpful. My syrinx is post traumatic from a snowmobile accident I had about 5 years ago.

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                          • #14
                            Let me know what the doc says.

                            CKF
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #15
                              Dr. Visit

                              I saw my Neuro today, I told him about my constant neck pain, my headaches and constant sweating. I told him that my pain was so bad that it wakes me up at night and I take a percocet and it doesn't touch my pain. As soon as he heard "percocet" he closed his laptop and said that my symptoms are side effects of percocet. I have been perscribed percocet for the past three years for my arthritis pain. I told him that I do no take it every day, on a really bad day I take 2 or 3 throught the day and night. I told him I know they can be addictive and I am very careful not to take them unless I am in a world of pain. He said my neck pain is due to my arthritis in my spine getting worse. he put me back in a soft collar and told me not to worry about it. I am not feeling warm and fuzzy about this man and think I should go to Boston for a second opinion. Your thoughts???

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