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syrinx Syringomyelia : Who has had one drained shunted or other treatment ?

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  • syrinx Syringomyelia : Who has had one drained shunted or other treatment ?

    Curious to hear from anyone who has had a syrinx (Syringomyelia) treated in anyway.

    What were your symptoms?
    What were the details of the treatment?

    How successful? would you recommend ?

    Just had a syrinx found in my MRI with contrast at around T3. .... my injury is at t4 !

    Being referred to a neurosurgeon!

  • #2
    I had a syrinx surgically corrected about 10 years ago. My symptoms started off with increased spasms in my legs, and an onset of sweating below my injury. Then, massive headaches. I was told I had cluster headaches, but as it turned out, that was not the case. Finally, I lost significant strength in my right arm. Then, an Mri showed a massive syrinx that extended down the length of my back, and up to my brain stem. I was admitted in a Hospital, where a team of physicians decided on a plan of action. They surgically detethered the adhesions from my level of injury and up about 3 vetebrae. There were two risks involved. First, that I might not get return on what was already lost and second that it could cause more damage. Surgery was the only option for me because if the syrinx continued to grow, then it was possible that it would affect my breathing and heart rate.

    The surgery involved removing about 3 inches of Harrington rods and removing some bone to gain access to the dura, which was sliced open and adhesions removed. They patched the dura with donor material and then it was sutured closed. The surgery lasted about 4 hours and was successful. My syrinx had completely collapsed. When I woke up the strength in my arm had returned and there were no complications that followed. I was in the hospital for 3 days and sent home with limited lifting. I would say the most painful part was probably for the first two days or so after the surgery. After that my pain level was easily managed with Tylenol.

    If you are having symptoms that are seriously affecting your quality of life, then surgery is probably your best option. However, if you are having no symptoms, then it is probably best to just monitor it. My syrinx has partially returned below my injury, but has not changed for at least 8 years now. There is no need to act on it because there are no symptoms. Most doctors will not consider surgery unless there are major symptoms.

    Good Luck to you.

    Comment


    • #3
      Many people have a small syrinx (cyst) at the level of their most severe spinal cord damage. The issue is if this cyst starts to enlarge in size, and especially if it is ascending the cord, with loss of sensation and motor function previously intact.

      Currently, surgical treatment for a syrinx is usually a combination of untethering surgery and shunting. This can be a very delicate surgery, with the potential to make things worse, so most neurosurgeons will not attempt it unless there is MRI evidence of the syrinx progressively enlarging, and the existence of progressive loss of sensation and/or motor function.

      Personally, I would never have this surgery done except by a neurosurgeon and at a facility with extensive experience in treating syringomyelia in people with traumatic SCI, even if that meant having to travel a considerable distance. Leading centers for this in the USA are at the University of Miami/Miami Project in Florida and at Craig/Swedish Hospital in Colorado.

      (KLD)
      Last edited by SCI-Nurse; 02-20-2019, 02:57 PM.
      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


      • #4
        I have had surgery for untethering which collapsed a small syrinx and for syrinx/syringeomelia as well as untethering - two separate surgeries a year apart. The first time I was classically symptomatic - increased spasticity, severe headaches, weird sweating, loss of continence - and post surgically all of those things were alleviated, and I also had significant and lasting relief of nerve pain and increased range of motion above my level of injury but below the level of the top of the tethering.

        The tethering recurred, I believe because I was on blood thinners, I also believe the recurring tethering caused the syrinx, which was growing and caused primarily weakness and headache. Again having the tethering removed collapsed the syrinx, which has not recurred (I just had a follow up), and while I did not make dramatic gains, I got back to a livable baseline. This is not a small surgery - it carries substantial risks, and requires expert nursing care and fairlly limited activity for a period afterwards.

        I have absolutely no regrets and would make the same choices again, I also saw a neurosurgeon with considerable expertise and a team I really trust. That said, if my quality of life and independence had not been deteriorating so rapidly and severely, I probably would’ve pursued a more conservative approach unless/until things got wonky.
        Last edited by annev308; 02-20-2019, 02:11 PM.

        Comment


        • #5
          Thank you for the responses.

          I'm being referred to a neurosurgeon.
          What are good questions for a neurosurgeon? How do you figure you really trust a neurosurgeon ?
          "how many syrinx/syringeomelia 's have you shunted/drained? How many syrinx/syringeomelia 's have you untethered?"

          What is untethering ?

          Recommendations for Neurosurgeons in the Pacific NorthWest ? Seattle Portland etc.


          Comment


          • #6
            So for me, untethering was removal of scar tissue that had formed between the dura and the cord and was both putting tension on the cord, which contributed to the syrinx formation, and interfering with CSF movement. My suspicion is that it will be hard to find an experienced neurosurgeon outside Miami (Univ of Miami/Jackson/Miami Spine Project) or Denver (Craig Rehabilitative Neurosurgery/Swedish Hospital).

            I trusted the neurosurgeon and his team because they are excellent, excellent educators. They did a whole bunch of testing and imaging and chart review, they are finicky about consistency, they provided me with a lot of information, they explained clearly and re-explained as often as necessary and they made absolutely no promises regarding outcome. They were meticulously clear about the decisions that were mine, what they might find in the OR that could cause them to make different choices than we had discussed, and they are kind and patient people. I did not feel like they were guaranteeing me anything other than their best efforts and all my research and direct experience of them led me to believe their best efforts would be ample, which they have indeed been.

            When you ask about syrinx/syringomelia, make it clear that you do not have Chiari, Spina Bifida or arachnoiditis. Often, neurosurgical screening staff will have some experience with Chiari, Spina Bifida or adhesive arachnoiditis secondary to either of the former and present their practice as experienced. There are very few neurosurgeons with experience with these things in SCI folks, it is a high risk procedure, and you may need to travel.

            Comment


            • #7
              Hi annev308,
              I think I might be facing the issues you went through. Do you mind telling me about those procedures? Where did you have it done? What is the recovery like and for how long? Thank you.

              Comment


              • #8
                Originally posted by annev308 View Post
                My suspicion is that it will be hard to find an experienced neurosurgeon outside Miami (Univ of Miami/Jackson/Miami Spine Project) or Denver (Craig Rehabilitative Neurosurgery/Swedish Hospital).
                The leading centers for surgical management of post-traumatic syrinygomyelia are as above.

                (KLD)
                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


                • #9
                  Originally posted by BigDave View Post
                  ,
                  I think I might be facing the issues you went through. Do you mind telling me about those procedures? Where did you have it done? What is the recovery like and for how long? .
                  I am a C5-6 quad and had surgery for a syrinx in 1999. This was at the University of Washington Medical Center in Seattle, the procedure took 8 hours. A tube was placed into the syrinx and left there draining into the abdominal cavity. The surgery was done on Friday and I was home by Sunday afternoon. By Monday I was back to my regular routine, recovery was a breeze.

                  The success of the procedure is debatable. I was 25 years post SCI and began noticing a decrease in strength and sensation in my left arm. An MRI revealed that there was a syrinx at the site of lesion. Following recovery, I could not tell if the lost sensation and strength returned or I became accustomed to this loss. However, until recently there was no further deterioration that I am aware of. Three weeks ago I developed pain in my right arm and a possible loss of strength, not sure what the problem is.

                  Comment


                  • #10
                    Thanks for all these responses - I was recently diagnosed with a syrinx that somehow grew undetected from T-10 (site of original injury) to T-1 from 2014 to 2020. No one would have known this except for me asking my physiatrist for some imaging. And I only knew to ask for this because of a great article in New Mobility that made me wonder if my symptoms were due to tethering or a syrinx. Now the doctor I trust most is urging an operation called syringopleural shunt, which involves draining the syrinx to the lung cavity. I am so afraid of this operation and what the recovery will entail, but I already see the signs of transitioning from paraplegic to quad. And I just took up playing guitar a year ago - it was on my bucket list. But now it may be impossible. Anyway, if anyone has thoughts or suggestions on this surgery and recovery, I'd love to hear. Thanks so much.

                    Comment


                    • #11
                      So the last time I had untethering done, I had also developed a pretty significant syrinx, and my neurosurgeon said that he would only shunt the syrinx as a last resort. I did not wind up needing a shunt - the syrinx collapsed when the scar tissue and adhesions were removed and neither the scar tissue/tethering nor the syrinx has recurred in the last 4 years. My understanding (I am counting on the SCI nurses and y’all to correct me if I’m wrong) is that one of the potential issues with shunting is that the hardware can move and also can get blocked, either of which would be - undesirable and is scary.

                      Both of my untetherings were long - both in terms of time and junk on the cord/in the dura - and I had longish inpatient stays (I live alone in a fairly rural area and no-one wanted any risks when I discharged). I had meaningful gains in function and sensation both times, along with reduced nerve pain and spasticity. I have acquired a weird thing where I get cold instead of feeling most pain, but that’s pretty okay with me.

                      I think I was really lucky to get treated as rapidly as I was. Some of that is because my changes in function were so dramatic and some of it was because I had a really transcendent outpatient case manager who advocated for me when my panic left me incoherent and frantic so things kept moving. The second time it was caught by a really great PT and again I got in very quickly. Regardless, I regained a lot of stuff that I hadn’t even noticed losing, which turned out to be very meaningful.

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