Syrinx symptoms .. I'm paranoid!

Rollerblade · 05-28-2009, 10:21 AM

Could someone fill me in on the symptoms that a T12/L1 para would experience if they had a syrinx? I'm getting paranoid that I have one but my symptoms could be a combination of other things. I have some discomfort and pain at my break sight in my back that I never used to have (I am post 12yrs) - soreness in my shoulders and arms but no muscle loss or weakness - and tingling in my left pinky finger but I also have a bracial plexus injury that happened at the same time as the SCI and so I have numbness in left hand anyway but the tingling is new. No tingling in arm or in other arm or hand and it seems to come and go. I have been spending a lot more time on the computer so maybe thats why. I know the standard response will be go to your doctor but I have a massive fear of doctors and an even bigger one of MRI's. I am not on any prescription medications. Do you think these are all unrelated issues or not? Thanks for any advice - I'm rather a hyperchondriac.

BESLC · 05-28-2009, 11:13 AM

I have a syrinx. My SCI is T-4, my syrinx is T-1 to T-9. Syrinx symptoms can vary from weakness, loss of sensation, loss of function similar to SCI. Your doctor can do tests to confirm the syrinx beginning with MRI, then doing a series of sensation, strength, and nerve conduction tests.

giambjj · 05-28-2009, 11:28 AM

My son has 2. One removed by Drs. Kao and the other by Hwang. Neither hurt him before or after.

dash · 05-28-2009, 01:09 PM

I was 1st injured in 1970 at C-6. I was very lucky and had my right hand except the ability to bring my pinky to my thumb (I've forgotten what that's called). I have tri-cepts and was completely independent.
In 1984 I had another neck injury in another auto accident. At 1st I was told it was severe whiplash. I just knew more was wrong. I was losing my ability to write, experiencing balance problems and having unusual pain among other things. My 1st real clue it was more then whiplash was a meyelogram revealing a complete block at T-6 (my cord had been open after an anterior fusion in 1970).
I then went to a local medical university and had my 1st of many MRI's and an EEG. Back then Syrnixes weren't common knowledge. I was told there was a "suspician" of a problem. Average medical books said they grew up resulting in death. I was then sent to NYU from FL because they felt it best to go where I had my original surgery. Once there friends could notice the difference in my abilities. I had another MRI and EEG. They wanted to do exploritory surgery. That scared me. I still had my tri-cepts and felt I wanted to be more sure.
I have a 1st cousin who is a neuro oncologist then working at Duke U. Hospt in NC but on a 6month fellowship in Europe somewhere. By the time I finally got as far as NYU I knew he'd be back in 2 wks. I went back to FL and sent him the results of all my different tests upon his return. He called and asked me to come back up. Of course they wanted to do every test again (I'll take an MRI over an EEG anyday). They also did a meyelogram from high in my cervical spine and a level by level cat scan w/ contrast dye. I had a huge syrnix progressing upward. At that time it was up to C-3 the bottom still at T-6. They wanted to to do surgery the next a.m. It didn't take long to decide. More then a year had passed where all I was doing was working to keep my medical insurance and traveling just to undergo medical tests. I felt I could trust my cousin (he lived in my family home for years when young). I knew I needed some kind of medical intervention...
The neurosurgeon he chose did a lamenectomy, removed pressure from w/in the cord, placed a tube to keep spinal fluid moving. It was only a 20 day hospy stay. I felt much better after the initial surgical pain passed. I never got return in my right hand (my left was quad like from the beginning). I also never got back some of the bonus trunk muscles I once had. But, it did stop the progression higher.
Sadly, a few yrs later the shunt in my spinal cord turned sideways. This has caused a lot of pain. I will not have another spinal surgery unless something starts to affect my tri-cepts. Don't ever take any surgery lightly. At 39yrs post the # of surgeries from broken femurs have taken a toll. Each one is harder to recover from. It also seems as though hospitals have become very dangerous w/ all of the staff and strep infections that seem to weaken me each time.

Prerun · 05-28-2009, 06:11 PM

I had mine taken care of by Dr. Scott Falci in Denver. Check this out:

http://www.craighospital.org/SCI/rehabNeurosurgery.asp

Rollerblade · 05-28-2009, 07:09 PM

Thank you Prerun - that site was very helpful. I don't have many of those symptoms so that has defiantly reassured me. I think I'll just monitor it and wait and see.

SCI-Nurse · 05-28-2009, 07:35 PM

Here is some good information:

http://sci.washington.edu/info/newsl..._traumatic.asp

http://www.spinalcord.uab.edu/show.asp?durki=21443

http://www.asap.org/syringomyelia.html

http://www.ninds.nih.gov/disorders/s...ingomyelia.htm

Many people with SCI who develop syringomyelia (a syrinx) may also have a tethered cord. Here is some information about that:

http://www.ninds.nih.gov/disorders/t...hered_cord.htm

(KLD)

Rollerblade · 05-28-2009, 10:07 PM

Thanks SCI-Nurse. I read through all the info and it was very informative. Is it safe to assume that a good indication of a syrinx or tethered cord would be a progression in the level of paralysis and sensation loss? For example I am T12/L1 incomplete and my normal level of sensation stops at the top of my legs. If that area slowly began creeping up I assume that would indicate trouble? So far my level of sensation has remained the same.

loreo · 05-29-2009, 01:57 PM

Hi there. I'm C5-6 incomplete. About a year ago, I experienced severe neck pain and numbness in my right hand (like you I have no left hand sensation, but my right was fine). My first thought was syrinx because my friend just went through painful shunt surgery the previous year. I went to my neurologist for tests (MRI etc) and, long story short, it turned out that I had both whiplash (from running my chair too fast over the uneven icy landscape), causing the neck pain, and carpel tunnel syndrome, causing the hand numbness. If you have one good hand, you end up using it twice as often as someone with two and are t/f high risk for CTS.

This isn't to say that you do not have a syrinx, it's always best to check with you doctor and get testing done, but it is what happened in my case. BTW, a night splint for three month helped clear up the numbness. Now, if I have any hand pain, I throw my splint on to relieve it.

05-28-2009, 10:21 AM	#1
Rollerblade Junior Member Join Date: Sep 2008 Posts: 25	Syrinx symptoms .. I'm paranoid! Could someone fill me in on the symptoms that a T12/L1 para would experience if they had a syrinx? I'm getting paranoid that I have one but my symptoms could be a combination of other things. I have some discomfort and pain at my break sight in my back that I never used to have (I am post 12yrs) - soreness in my shoulders and arms but no muscle loss or weakness - and tingling in my left pinky finger but I also have a bracial plexus injury that happened at the same time as the SCI and so I have numbness in left hand anyway but the tingling is new. No tingling in arm or in other arm or hand and it seems to come and go. I have been spending a lot more time on the computer so maybe thats why. I know the standard response will be go to your doctor but I have a massive fear of doctors and an even bigger one of MRI's. I am not on any prescription medications. Do you think these are all unrelated issues or not? Thanks for any advice - I'm rather a hyperchondriac.

05-28-2009, 11:28 AM	#3
giambjj Senior Member Join Date: Jul 2001 Location: Auburn, AL,USA Posts: 1,866	syrinx My son has 2. One removed by Drs. Kao and the other by Hwang. Neither hurt him before or after. __________________ Jake's Pop

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05-28-2009, 11:13 AM	#2
BESLC Junior Member Join Date: Feb 2007 Posts: 10	I have a syrinx. My SCI is T-4, my syrinx is T-1 to T-9. Syrinx symptoms can vary from weakness, loss of sensation, loss of function similar to SCI. Your doctor can do tests to confirm the syrinx beginning with MRI, then doing a series of sensation, strength, and nerve conduction tests.

05-28-2009, 01:09 PM	#4
dash Senior Member Join Date: May 2009 Location: Florida Posts: 436	I was 1st injured in 1970 at C-6. I was very lucky and had my right hand except the ability to bring my pinky to my thumb (I've forgotten what that's called). I have tri-cepts and was completely independent. In 1984 I had another neck injury in another auto accident. At 1st I was told it was severe whiplash. I just knew more was wrong. I was losing my ability to write, experiencing balance problems and having unusual pain among other things. My 1st real clue it was more then whiplash was a meyelogram revealing a complete block at T-6 (my cord had been open after an anterior fusion in 1970). I then went to a local medical university and had my 1st of many MRI's and an EEG. Back then Syrnixes weren't common knowledge. I was told there was a "suspician" of a problem. Average medical books said they grew up resulting in death. I was then sent to NYU from FL because they felt it best to go where I had my original surgery. Once there friends could notice the difference in my abilities. I had another MRI and EEG. They wanted to do exploritory surgery. That scared me. I still had my tri-cepts and felt I wanted to be more sure. I have a 1st cousin who is a neuro oncologist then working at Duke U. Hospt in NC but on a 6month fellowship in Europe somewhere. By the time I finally got as far as NYU I knew he'd be back in 2 wks. I went back to FL and sent him the results of all my different tests upon his return. He called and asked me to come back up. Of course they wanted to do every test again (I'll take an MRI over an EEG anyday). They also did a meyelogram from high in my cervical spine and a level by level cat scan w/ contrast dye. I had a huge syrnix progressing upward. At that time it was up to C-3 the bottom still at T-6. They wanted to to do surgery the next a.m. It didn't take long to decide. More then a year had passed where all I was doing was working to keep my medical insurance and traveling just to undergo medical tests. I felt I could trust my cousin (he lived in my family home for years when young). I knew I needed some kind of medical intervention... The neurosurgeon he chose did a lamenectomy, removed pressure from w/in the cord, placed a tube to keep spinal fluid moving. It was only a 20 day hospy stay. I felt much better after the initial surgical pain passed. I never got return in my right hand (my left was quad like from the beginning). I also never got back some of the bonus trunk muscles I once had. But, it did stop the progression higher. Sadly, a few yrs later the shunt in my spinal cord turned sideways. This has caused a lot of pain. I will not have another spinal surgery unless something starts to affect my tri-cepts. Don't ever take any surgery lightly. At 39yrs post the # of surgeries from broken femurs have taken a toll. Each one is harder to recover from. It also seems as though hospitals have become very dangerous w/ all of the staff and strep infections that seem to weaken me each time.

05-28-2009, 06:11 PM	#5
Prerun Member Join Date: Jan 2009 Location: Oconto Falls, WI Posts: 91	I had mine taken care of by Dr. Scott Falci in Denver. Check this out: http://www.craighospital.org/SCI/rehabNeurosurgery.asp

05-28-2009, 07:09 PM	#6
Rollerblade Junior Member Join Date: Sep 2008 Posts: 25	Thank you Prerun - that site was very helpful. I don't have many of those symptoms so that has defiantly reassured me. I think I'll just monitor it and wait and see.

05-28-2009, 07:35 PM	#7
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,362	Here is some good information: http://sci.washington.edu/info/newsl..._traumatic.asp http://www.spinalcord.uab.edu/show.asp?durki=21443 http://www.asap.org/syringomyelia.html http://www.ninds.nih.gov/disorders/s...ingomyelia.htm Many people with SCI who develop syringomyelia (a syrinx) may also have a tethered cord. Here is some information about that: http://www.ninds.nih.gov/disorders/t...hered_cord.htm (KLD)

05-28-2009, 10:07 PM	#8
Rollerblade Junior Member Join Date: Sep 2008 Posts: 25	Thanks SCI-Nurse. I read through all the info and it was very informative. Is it safe to assume that a good indication of a syrinx or tethered cord would be a progression in the level of paralysis and sensation loss? For example I am T12/L1 incomplete and my normal level of sensation stops at the top of my legs. If that area slowly began creeping up I assume that would indicate trouble? So far my level of sensation has remained the same.

05-29-2009, 01:57 PM	#9
loreo Senior Member Join Date: Sep 2008 Location: Ontario, Canada Posts: 542	Hi there. I'm C5-6 incomplete. About a year ago, I experienced severe neck pain and numbness in my right hand (like you I have no left hand sensation, but my right was fine). My first thought was syrinx because my friend just went through painful shunt surgery the previous year. I went to my neurologist for tests (MRI etc) and, long story short, it turned out that I had both whiplash (from running my chair too fast over the uneven icy landscape), causing the neck pain, and carpel tunnel syndrome, causing the hand numbness. If you have one good hand, you end up using it twice as often as someone with two and are t/f high risk for CTS. This isn't to say that you do not have a syrinx, it's always best to check with you doctor and get testing done, but it is what happened in my case. BTW, a night splint for three month helped clear up the numbness. Now, if I have any hand pain, I throw my splint on to relieve it.