[gazrobsuk]

I've got one at my injury level (incomplete C3-4) which does worry me. I've had a few scans now in nearly 6 years post injury & I have heard of folks after many years having it grow which scares me. I've also just had a pacemaker fitted (still struggling to recover) & I can't have any more MRI scans. If mine gets worse then I'm in big trouble:-( does anyone know if an incision followed by a drain is the only 'fix' or does anyone have any other relevant info on this.

You'd think after all these years it would be stable & I've often wondered if there was a magic way of making it disappear without spinal cord damage & whether that would give me more back i.e. is it the fluid/cyst that's causing the problem etc.

Any info would be great.

[russ1]

I had one fairly soon post injury - it's pretty scary especially when you're T2 and any further loss of function takes you into tetra area. I was lucky and mine has diminished to the extent that my consultant tells me I shouldn't say I have one any more (3 years later). They can be stable or can get worse or better and there's no telling which way they'll go. If they start to affect your function then surgery is AIUI the only option. Regular MRI's are apparently the only way to monitor these.

It's going to be a very worrying 6 months for you and there's nothing much I can tell you to make it any easier but a positive outcome is entirely possible. Even if the syrinx get worse then a shunt (the op) is apparently likely to be sucessful. It's only if a. the syrinx gets worse AND b. the shunt is unsucessful that you could end up worse off.

Keep a good check on your level of feeling - ie where it starts and stops and if this starts to get higher then get back on to your neuro surgeon as a matter of urgency as this is the first sign of the syrinx moving up - at least that was what Iwas told. While your level of feeling remains the same you should be ok.

Good Luck

[wheelszzz]

I was injured in late 92, and then Jan of 97 had my first surgery to remove fluid from the injury T-8 area. I lost a little feeling on my right ring finger and above the elbow. I had to have a second surgery to put in a shunt where the fluid would drain into the abdomen area. Now a am about a T-5 or six on the left side a T-4 on the right side and went from being incomplete to complete. But I could have ended up a quad if the fluid would have kept damaging my spinal cord.

[car]

My fiance has been in a chair for 18 years and is . 3 years ago he had severe neck pain. An MRI showed a syrinx. We were referred to a nuerosurgeon who said just wait 6 months to see if there is a change. One day he could not drive his van becasue his right arm was weaker. They do not do surgery unless the syrinx causes severe pain or causes weakness. The surgery can be risky. You need to go to an experienced nuerosurgeon who is familiar with it. The first neurosurgeon we went to did not listen to what was going on and did not seem to be understanding of how important what little my fiance had left was important.

We ended up in Philadelphia at Thomas Jefferson with an excellent neurosurgeon who has a careful approach and we are just waiting to see if he loses any more and if the surgery is necessary. We do not want the surgery unless he absolutely has to have it. He has a syrinx from like t7 to c2. It is pretty big. I guess that is typical. And he has spurs that may be causing they syrinx at c2-3-4-5-6 levels.

[AHolland]

mmmm I had this exact discussion with my specialist yesterday. Funny coincidence.

For the last 2 years I have been fighting rising pain level. Yesterday the specialist and I looked at one of my recent MRI's and discussed what is going on. I have a couple of cysts below my break and a couple above my break (T4-5 complete). It's ahrd to tell, but mine might be getting bigger.

Cysts are very common in trauma based spinal cord injuries. Usually they just watch them for a couple of years via MRI's. If everything is stable, they leave them alone as the surgery poses a real risk to futher injure the spinal cord. I can see where the cyst is pushing up against the spinal cord.

From what the doctor said, the cyst could be under pressure, or fairly soft. There is no way to tell from the MRI. If the cysts is under pressure, then releaving it by surgery could reduce the pressure on the spine and subsequent pain. If the cyst is soft, then there is less likelyhood that it is exerting pressure on the spine and causing pain. He was quick to add that a lot of this is just guesswork and no one really knows. He is trying to get some time off work to research exactly this issue....something he is interested in. As a final note, he works in a large city and deals with a ton of spinal cord injuries on a constant basis. He's not a small town doctor, etc. So....I basically believe what he has told me.

I guess I'm now on a list for back surgery to investigate these cysts. They will almost certainly pop the ones below my break as there is little risk of extra damage (T4-5 complete). They may or may not pop the ones above my break (T1-2) as there is a real risk of extra damage. I guess they will poke around them ans see what they can do with little risk. I don't expect this surgery to happen for some time, so any follow up to this will be a long time. Then again I'm willing to take any opening so who knows. I've got to do something to reduce this pain.

[roller43]

Hi,

I'm new here. From Tucson, Arizona, USA. I didn't realize this was a UK based list. I guess spinal cord injuries and syrinx are the same no matter where you're from. I was injured in a hunting accident in 1984 (T12 - L1 complete) and was able to get around pretty well in a wheelchair until 1996. I started getting severe stabbing pain in my chest when I coughed or sneezed. I went to doctor after doctor for months but no one seemed to know what caused it. I had read about the possibility of a syringomyelia and told the neurologist (a very young woman) that's what I thought it might be. She said no, we did an MRI and it would have shown. Finally my family doctor told me to go to an arthritis doctor. He listened to my story and he said "she took the MRI of the wrong part of the spine." I went to another neurologist and he said "I'll bet my hammer it's a syrinx!" I wound up having surgery in February, 1997.

The syrinx started at my injury(T12) and went all the way up to the brain stem. The surgeon put in a shunt to drain it and to make sure it couldn't come back. Unfortunately, I lost some sensation in my right hand and arm and I have continued to have some pain from it, but nothing like what it was before the operation. The pain I have now is like an electric shock that goes down my arm to my hand. It happens intermittently and I haven't been able to figure out what triggers it. I've taken diclofenac and nortriptyline to control the pain for years but it doesn't work as good as it used to. I'm at maximum dosage now so I'm going to talk to my doctor about trying something else. Between that pain and my constant back pain, I'm about ready for the hemlock tea.

I've had a right shoulder problem (nerve impingement) lately that required arthroscopic surgery to remove a bone spur. During rehab from that I dislocated the a/c joint. After surgery from that I managed to break the end off the clavical and dislocate the a/c joint agiain. Now the orthopedic doctor is not sure how to fix it. This paraplegia isn't for sissys!

[car]

AHolland, on Jun 1 2006, 07:15 PM, said:

mmmm I had this exact discussion with my specialist yesterday. Funny coincidence.

For the last 2 years I have been fighting rising pain level. Yesterday the specialist and I looked at one of my recent MRI's and discussed what is going on. I have a couple of cysts below my break and a couple above my break (T4-5 complete). It's ahrd to tell, but mine might be getting bigger.

Cysts are very common in trauma based spinal cord injuries. Usually they just watch them for a couple of years via MRI's. If everything is stable, they leave them alone as the surgery poses a real risk to futher injure the spinal cord. I can see where the cyst is pushing up against the spinal cord.

From what the doctor said, the cyst could be under pressure, or fairly soft. There is no way to tell from the MRI. If the cysts is under pressure, then releaving it by surgery could reduce the pressure on the spine and subsequent pain. If the cyst is soft, then there is less likelyhood that it is exerting pressure on the spine and causing pain. He was quick to add that a lot of this is just guesswork and no one really knows. He is trying to get some time off work to research exactly this issue....something he is interested in. As a final note, he works in a large city and deals with a ton of spinal cord injuries on a constant basis. He's not a small town doctor, etc. So....I basically believe what he has told me.

I guess I'm now on a list for back surgery to investigate these cysts. They will almost certainly pop the ones below my break as there is little risk of extra damage (T4-5 complete). They may or may not pop the ones above my break (T1-2) as there is a real risk of extra damage. I guess they will poke around them ans see what they can do with little risk. I don't expect this surgery to happen for some time, so any follow up to this will be a long time. Then again I'm willing to take any opening so who knows. I've got to do something to reduce this pain.

We had to go to philadelphia to find a doctor comfortable with it. In fact going again to and next Friday for a mylegram. The docs around here seemed clueless. And yes they do not know a whole lot about it

This post has been edited by car: 02 June 2006 - 11:01 AM