15 replies to this topic

[noone]

i was diagnozed with syrinx c2-c4.That means the spinal cord is thicker than normal filled with fluid and bit's growing upwards into the brain. my doc says it can cause damage to the breathing or\and the heart function. if i go to a neurologist he'll most likely recommend an operations to put a shunt in my spine.this will stop the growth of the spinal cord into the brain.But in his experience most patients got worse after the surgery.He doesn't know how long i have.it can grow fast or slow.
have anybody ever heard about this thing?it's called syrinx.

[Smileyblue]

I am heart-wrenched by yr story.. This must be a very trying time for u.. I dont have the answers u need, but I wanted to let u know u'll be in my thoughts..

I did a quick search on Google and found a few hits that might answer yr questions.. Search syringomyelia.. I found some information on "merck.com"..

[julibugs]

Hi, I just wanted to say I'm thinking you - I too googled your condition and found this website http://www.csfinfo.org I hope you find the answers you're looking for.

[JohnnyO]

I was diagnosed with Syringomyelia two years ago with two cysts around C-5 and T8. Like yourself, the Neurologists couldn’t determine why they were there and how fast the cysts were growing. By the time we did find them, they were quite large and I had to decide whether to have the surgery or just monitor their progress. After a lot of consideration and finding a great Neurosurgeon in Los Angeles, I had a shunt placed into the one cyst last year and it resulted in it shrinking about 25%. As you mentioned, there are a lot of complications to the surgery and they don’t always work. Sort of a gamble if you ask me…..

Check out this informational/resource website that is devoted solely to Syringomyelia and Chiari.

http://www.asap.org/


If you want to PM me, I can give you more information on what I encountered during this “wonderful” experience…..

Edited by JohnnyO, 24 May 2010 - 04:50 PM.

[qbounce]

A syrinx is formed from the scar tissue built up around your SCI. A shunt only helps drain the build up of fluid around the pooled area (aka: syrinx/ syringomyelia) for a limited time. More often than not, it reforms again over time unless the initial problem is dealt with . . . surgically untethering the scared tissue around the cord that caused the syrinx in the first place.

A Tethered cord can cause a syrinx to form. Many doctors only see the syrinx as the problem, thus never fully solving the main issue with just a shunt. The first step is to shunt the syrinx. Next, the surgical untethering prevents any further occurrences to take place.

Look for the New Mobility magazine March 2009 issue. It's cover reads, "Untethering The Cord."
Also, look up Craig Hospital. Denver, Colorado. Dr. Falcci

Your prognosis is only as bleak as the doctors helping you. Good luck

[allister]

Hey Noone,
Gutted to hear your news, thoughts are with you and your family, hope you find the right Dr to rectify the issue.
Best wishes..
Al

[Tetracyclone]

 qbounce, on May 24 2010, 01:49 PM, said:

A syrinx is formed from the scar tissue built up around your SCI. A shunt only helps drain the build up of fluid around the pooled area (aka: syrinx/ syringomyelia) for a limited time. More often than not, it reforms again over time unless the initial problem is dealt with . . . surgically untethering the scared tissue around the cord that caused the syrinx in the first place.

A Tethered cord can cause a syrinx to form. Many doctors only see the syrinx as the problem, thus never fully solving the main issue with just a shunt. The first step is to shunt the syrinx. Next, the surgical untethering prevents any further occurrences to take place.

Look for the New Mobility magazine March 2009 issue. It's cover reads, "Untethering The Cord."
Also, look up Craig Hospital. Denver, Colorado. Dr. Falcci

Your prognosis is only as bleak as the doctors helping you. Good luck

Q- you on the job, bud!

[BillS]

I've had a Syrinx/Syringomyelia for over 10 years. It was diagnosed about 10 years ago but there is really no way of knowing how long I've had it.

So far it hasn't really grown any further then it was 10 years ago. I get an MRI done once a year and my neurosurgeon looks it over, talks to me about any problems and then tells me to come back in a year. Personally I'd be very happy if it just stayed the way it is right now and never required surgery.

Good luck!

[qbounce]

 Tetracyclone, on May 24 2010, 01:24 PM, said:

 qbounce, on May 24 2010, 01:49 PM, said:

A syrinx is formed from the scar tissue built up around your SCI. A shunt only helps drain the build up of fluid around the pooled area (aka: syrinx/ syringomyelia) for a limited time. More often than not, it reforms again over time unless the initial problem is dealt with . . . surgically untethering the scared tissue around the cord that caused the syrinx in the first place.

A Tethered cord can cause a syrinx to form. Many doctors only see the syrinx as the problem, thus never fully solving the main issue with just a shunt. The first step is to shunt the syrinx. Next, the surgical untethering prevents any further occurrences to take place.

Look for the New Mobility magazine March 2009 issue. It's cover reads, "Untethering The Cord."
Also, look up Craig Hospital. Denver, Colorado. Dr. Falcci

Your prognosis is only as bleak as the doctors helping you. Good luck

Q- you on the job, bud!

Well, I have a Tethered Cord and it sucks! I got tired of hearing neurosurgeons tell me there was nothing they could do. So I found an expert, and am currently awaiting a referral to go back to Colorado for surgery. * Fingers crossed Emoticon, here*

[noone]

 Smileyblue, on May 24 2010, 03:01 PM, said:

I am heart-wrenched by yr story.. This must be a very trying time for u.. I dont have the answers u need, but I wanted to let u know u'll be in my thoughts..

I did a quick search on Google and found a few hits that might answer yr questions.. Search syringomyelia.. I found some information on "merck.com"..

thx

 BillS, on May 25 2010, 03:49 PM, said:

I've had a Syrinx/Syringomyelia for over 10 years. It was diagnosed about 10 years ago but there is really no way of knowing how long I've had it.

So far it hasn't really grown any further then it was 10 years ago. I get an MRI done once a year and my neurosurgeon looks it over, talks to me about any problems and then tells me to come back in a year. Personally I'd be very happy if it just stayed the way it is right now and never required surgery.

Good luck!

i hope i'm that lucky.but it is already at C2 and i don't know if i can take the chance of just monitoring?

 qbounce, on May 25 2010, 06:48 PM, said:

 Tetracyclone, on May 24 2010, 01:24 PM, said:

 qbounce, on May 24 2010, 01:49 PM, said:

A syrinx is formed from the scar tissue built up around your SCI. A shunt only helps drain the build up of fluid around the pooled area (aka: syrinx/ syringomyelia) for a limited time. More often than not, it reforms again over time unless the initial problem is dealt with . . . surgically untethering the scared tissue around the cord that caused the syrinx in the first place.

A Tethered cord can cause a syrinx to form. Many doctors only see the syrinx as the problem, thus never fully solving the main issue with just a shunt. The first step is to shunt the syrinx. Next, the surgical untethering prevents any further occurrences to take place.

Look for the New Mobility magazine March 2009 issue. It's cover reads, "Untethering The Cord."
Also, look up Craig Hospital. Denver, Colorado. Dr. Falcci

Your prognosis is only as bleak as the doctors helping you. Good luck

Q- you on the job, bud!

Well, I have a Tethered Cord and it sucks! I got tired of hearing neurosurgeons tell me there was nothing they could do. So I found an expert, and am currently awaiting a referral to go back to Colorado for surgery. * Fingers crossed Emoticon, here*

can you be more specific.why does it sucks?

 allister, on May 24 2010, 08:23 PM, said:

Hey Noone,
Gutted to hear your news, thoughts are with you and your family, hope you find the right Dr to rectify the issue.
Best wishes..
Al

thx

 JohnnyO, on May 24 2010, 05:49 PM, said:

I was diagnosed with Syringomyelia two years ago with two cysts around C-5 and T8. Like yourself, the Neurologists couldn’t determine why they were there and how fast the cysts were growing. By the time we did find them, they were quite large and I had to decide whether to have the surgery or just monitor their progress. After a lot of consideration and finding a great Neurosurgeon in Los Angeles, I had a shunt placed into the one cyst last year and it resulted in it shrinking about 25%. As you mentioned, there are a lot of complications to the surgery and they don’t always work. Sort of a gamble if you ask me…..

Check out this informational/resource website that is devoted solely to Syringomyelia and Chiari.

http://www.asap.org/


If you want to PM me, I can give you more information on what I encountered during this “wonderful” experience…..

specific what do you mean'complications'? what can happen?i'll be more paralized or...?

[qbounce]

 noone, on May 26 2010, 05:30 AM, said:

can you be more specific.why does it sucks?

Because I've lost sensory and motor function above my injury level, and continue losing it until I get that surgery done.

[noone]

 deb4604, on May 28 2010, 02:20 AM, said:

 noone, on May 24 2010, 09:38 AM, said:

i was diagnozed with syrinx c2-c4.That means the spinal cord is thicker than normal filled with fluid and bit's growing upwards into the brain. my doc says it can cause damage to the breathing or\and the heart function. if i go to a neurologist he'll most likely recommend an operations to put a shunt in my spine.this will stop the growth of the spinal cord into the brain.But in his experience most patients got worse after the surgery.He doesn't know how long i have.it can grow fast or slow.
have anybody ever heard about this thing?it's called syrinx.

My bf had a spinal shunt placed years ago after he was diagnosed with a syrinx and started to have loss of function. There is still some fluid outside the shunt that they monitor every 6-12 mos but it hasn't changed in years.
I'm sure he'd be happy to talk to you about his experience.
PM me if you're interested in knowing more.

I agree, C2 is too high to wait and see. Are you having loss of function or sensation? Is that how you knew something was going on?

no i was hospitalized because of severe headaches caused by autonomic disreflexia.after three weeks i got better but still had some unexlpained headaches right side in the back of my skull.an MRI revealed SM.by know i don't have any pain.

[canvaspainter]

I too have been diagnosed, It's called Syringomyelia. I have 2 cysts one is 3cm and the other is 5cm from T2 thru T11. I saw my first Neurosurgeon last week and unfortunately he refuses to do surgery. "It's too much of a risk."
I have made an appointment for a second opinion.
Very interested to find out what this surgeon has to say.

[canvaspainter]

Symptoms :
Muscle spasms on the left side of my body, Charly Horses on the right side.
Tingling in the right upper thigh.
Alot of pain and pressure in the very center of my back.
Ringing in both ears, Muscle weakness.

Does anyone else experience these kinds of symptoms?

[qbounce]

 canvaspainter, on 30 August 2010 - 05:16 PM, said:

Symptoms :
Muscle spasms on the left side of my body, Charly Horses on the right side.
Tingling in the right upper thigh.
Alot of pain and pressure in the very center of my back.
Ringing in both ears, Muscle weakness.

Does anyone else experience these kinds of symptoms?

Yes, get ANOTHER neurosurgeon who specializes in syringomyelia/ tethered cord surgeries to look at you ASAP. The longer you wait, the more function you stand to lose. Those symptoms were how mine started too, and it only got worse from there. And you have the PROOF on your MRI, so I can hardly believe you've got a doctor who's finding it difficult to take care of your issue, let alone refer you to another more competent doctor!