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    Syringomyelia???

    I don't know which forum to post this in. My friend just told me he has been diagnosed with this. He is c5 inc, but the cyst is pushing against c3-4, which is where he was injured. He had been experiencing weakness, and the dr. was initially concerned about MS. But after an MRI, is turned out to be this.

    He asked me to google it, and I did. But there didn't seem to be any treatment. Does anyone know anything about this?

    My mind is racing with questions...if anyone can point me in any direction, I would appreciate it. He is on this site, so if there is some good information I will let him know so he can log in.

    Thanks in advance.

    Liz
    I wished upon a falling star, I wished it had not fallen...

    #2
    Mods...please move this to the correct thread. Thank you.
    I wished upon a falling star, I wished it had not fallen...

    Comment


      #3
      HI,

      Here is a site with information but you will probably find more information if you search by syrinx.
      http://www.ninds.nih.gov/disorders/s...ingomyelia.htm

      Search both on www and carecure. There is alot of information on this site.

      AAD
      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
        Thank you...I appreciate the link. More worried now that I know more, but I would rather have some understanding of it.
        I wished upon a falling star, I wished it had not fallen...

        Comment


          #5
          Syrinx is quite common in SCI and treatment is varied., depending on size and symptoms. Those who have surgery can get some relief of their symptoms but occasionally the cyst can return. There are many people who live with these cysts and get regular monitoring of their size through MRI- some advance and some don't. Knowing more and how to recognize symptoms of advancement are the key.
          Being connected with a good center and neurologist is very important.

          AAD
          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


            #6
            Hi Nurse AAD,

            I've been a T 4-5-6 complete para for 28 years and just had my first 4 MRIs taken. One each of the thoracic and lumbar spine with and without contrast dye. I didn't realize how small and confining those MRI machines are. And how long the imaging takes. I thought I'd be in and out of the MRI machine/tube like I was when I had a CAT scan taken. Little did I know!

            Anyway, I have a syrinx that has grown upward to T-3. I don't know how far down it's grown. I have no symptoms motor or sensory-wise except perhaps for the fact that I'm on 3200mgs of gabapentin for a knife-like pain in my right flank. I've had the pain for about 4 years.

            I also have bone spurs or whatever my doctor called them at around the area or level of my pain. And other stuff associated with being in a chair for 28 years.

            Could the syrinx be causing this pain that's located below my injury level at around T-8 through T-10... in my liver area?

            I know what a serious surgical operation to remove a syrinx is. Have you heard of any success of treating syrinx's with a CyberKnife®?

            Thank you.

            Bob.
            "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

            Comment


              #7
              I have seen Dr. Green's name mentioned. Can anyone tell me who is the best to do this type of surgery in the Massachusetts area? Anyone familiar with the idea of "wicking" the fluid out?
              I wished upon a falling star, I wished it had not fallen...

              Comment


                #8
                Originally posted by bob clark
                Hi Nurse AAD,

                I've been a T 4-5-6 complete para for 28 years and just had my first 4 MRIs taken. One each of the thoracic and lumbar spine with and without contrast dye. I didn't realize how small and confining those MRI machines are. And how long the imaging takes. I thought I'd be in and out of the MRI machine/tube like I was when I had a CAT scan taken. Little did I know!

                Anyway, I have a syrinx that has grown upward to T-3. I don't know how far down it's grown. I have no symptoms motor or sensory-wise except perhaps for the fact that I'm on 3200mgs of gabapentin for a knife-like pain in my right flank. I've had the pain for about 4 years.

                I also have bone spurs or whatever my doctor called them at around the area or level of my pain. And other stuff associated with being in a chair for 28 years.

                Could the syrinx be causing this pain that's located below my injury level at around T-8 through T-10... in my liver area?

                I know what a serious surgical operation to remove a syrinx is. Have you heard of any success of treating syrinx's with a CyberKnife®?

                Thank you.

                Bob.

                sorry to hear ya got a damn syrinx bob. but yea, feels like you're in that mri tube forever. i need to get with a good neurologist and have one done. haven't had an mri since i was about 6 months post. they saw a small spot then, right at my injury spot, c/6/7. i got that same flank/liver pain too. i'm worried to death of the dreaded syrinx, since it sounds like most every sci is bound to get one.

                hope ya get the best option figured out bob.

                Comment


                  #9
                  Originally posted by zilnh
                  I have seen Dr. Green's name mentioned. Can anyone tell me who is the best to do this type of surgery in the Massachusetts area? Anyone familiar with the idea of "wicking" the fluid out?
                  zilnh,

                  I went to UMASS Memorial hospital for my surgery. My doctor collaborated with a team of specialists to figure out what to do with my syrinx. I was extremely happy with my treatment there. They were all very knowledgeable, and I was confident that I was getting the best treatment available for this area.

                  My doctor was Dr. Richard Moser. He was the one who performed the surgery for my syrinx. I recommend him highly. If you have any questions, let me know. He has an office where you can reach him located in the hospital if you like. I can get you the number if you are interested. Good luck, I wish you the best.

                  Comment


                    #10
                    I am the one with the Cyst, I'm from Boston. I started experiencing weakness in my wrists many months ago. I have had difficulty breathing too...attributed it to my sleep apnea. I saw my Dr. and asked if I had MS or something. I was just diagnosed Wednesday with a Syrinx. I am looking for the best doc out there...doesn't have to be local.

                    Comment


                      #11
                      Originally posted by n8dizzle
                      I was just diagnosed Wednesday with a Syrinx. I am looking for the best doc out there...doesn't have to be local.
                      Contact Dr. Barth Green's office in Miami and ask them for a referral in your area.

                      C.

                      Comment


                        #12
                        Yikes, I didn't know this existed.

                        Zilnh May God be with you and the surgery go perfect.
                        Glad you're hunting down a good Dr. that knows his business.


                        God Bless all of you~
                        sigpic

                        Comment


                          #13
                          Thanks for the concern Mona-but I was posting about n8dizzle. He has posted for himself, so I won't continue on this.

                          Liz
                          I wished upon a falling star, I wished it had not fallen...

                          Comment


                            #14
                            Originally posted by n8dizzle
                            I am the one with the Cyst, I'm from Boston. I started experiencing weakness in my wrists many months ago. I have had difficulty breathing too...attributed it to my sleep apnea. I saw my Dr. and asked if I had MS or something. I was just diagnosed Wednesday with a Syrinx. I am looking for the best doc out there...doesn't have to be local.
                            n8,

                            I'm not sure if you are interested in UMASS or not, but below are the two doctors who played a major role in the diagnosis and treatment for my syrinx. Doctor Moser performed the surgery. If you have any questions, let me know.. Whatever you decide, I wish you the best.

                            http://www.umassmemorial.org/ummhc/h...?temp=M1987A98

                            http://www.umassmemorial.org/ummhc/h...?temp=M1956S79

                            Comment


                              #15
                              Here are a couple of links, might save a bit of a search:


                              /forum/showthread.php?t=54489
                              What can be done? For many years, neurosurgeons have operated to shunt syringomyelic cysts, placing one end of a catheter into the cyst and the other end into the intrathecal space or into the pleural or peritoneal cavity. In about 80% of the patients, the shunt will clog up and the cyst will form again within a year or so. About 10 years ago, Barth Green and his colleagues started to remove the adhesive scar around the spinal cord to allow CSF to flow without placing a shunt. This was considered quite radical but they showed that this will significantly reduce or eliminate the syrinx 80% of the time without having to reoperate. Many surgeons who believe in the first theory, however, have continued to place a shunt at the same time they move the adhesions from the surrounding cord.

                              When should operations be done? If the syrinx is small, it may just stay that way. However, if the syrinx is enlarging (on sequential MRI) or is causing neuropathic pain and loss of function, it should be operated on sooner rather than later. The reason is because the neuropathic pain and function loss may become permanent if the syrinx is left too long (i.e. months). Untethering the spinal cord may also restore some function, particularly to the spinal roots that are tethered.

                              Who should do the surgery? A neurosurgeon should do the operation. Most neurosurgery departments should have an experienced spinal surgeon. It should be a surgeon who has done a significant number of cases and who understands that the goal of the surgery is to restore CSF flow around the spinal cord. The surgeon may place a shunt and remove adhesions at the same time.


                              /forum/showthread.php?t=71330

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