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Thread: Syringomyelia???

  1. #1
    Senior Member zilnh's Avatar
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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. #2
    Senior Member zilnh's Avatar
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    Mods...please move this to the correct thread. Thank you.
    I wished upon a falling star, I wished it had not fallen...

  3. #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

  4. #4
    Senior Member zilnh's Avatar
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    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...

  5. #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

  6. #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

  7. #7
    Senior Member zilnh's Avatar
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    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...

  8. #8
    Quote 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.

  9. #9
    Quote 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.

  10. #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.

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