Syrinx at C2.... Time for surgery (again)??

[amitsyrinx]

Hi,
I have syringomyelia since 1994 (syrinx is C2-L1 incomplete -in septae). I'm fully wheelchair bound & have no sensation or power chest downward. I also have no sensation in my right hand & right side of neck & face. I do however have good power in both my hands. I sweat excessively on the left side of my body. I have a neurological bladder. I've been thru 3 spinal cord surgeries, the latest op was 5 years ago (in 2005) when my neurosurgeon replaced a peritoneal shunt with a sub-arachnoid shunt which resulted in syrinx reducing in size from C2 to C8. A follow up scan a year later confirmed the reduction of syrinx. Now, almost 5 years later (in 2010) i got some sever vertigo problem during lying down & getting up - i got an MRI done and the syrinx has increased to C2 again. I assume my vertigo was due to the pressure being built around my cervical region, however i was put on anti-vertigo medication (vertin 24 & stugeron) and after 2 weeks the vertigo disappeared completely. I don't yet see any visible/ significant symptoms in my upper limbs (sensory or motor) - My Question is : Is is time again for another (immediate) surgery - If not, why? and if yes, why?  Also, (in case of an eventual surgery - should a 'programmable shunt' be considered - i hear UCLA has a good experience with them. I also hear with programmable shunts CSF blockage & subsequent pressure build up becomes a thing of the past implying recurring surgeries could be avoided - is that true? What about minimally invasive shunt placement / any other newer established treatments ?
Please advise.....Huge thanks in advance!

[*Stormy*]

Yes, I was wondering that too, I take it that there was some damage done from the meningitis that they tried to repair...Good luck on trying some of the NS I really hope that you get some help from them.

Like Ray said we are always here for support!!

Carolyn

[Amethyst3]

Can I ask what kind of surgery for meningitis led to the syringomyelia?

[rod44]

Hi amit, welcome. I have a syrinx in the cervical/thoracic area of my spine. My NS feels it is congenital.
I first became aware of a problems in the mid 1990 when I started having twitching in my calf muscles (both legs) and numbness, I also can not tell the difference between hot and cold in my feet. At that time it was felt by doctors that it was axonal neuropathy. after a few years it started affecting my hands. long story short I was sent for an MRI last year and got my DX. For now the NS is monitoring things and is unsure how to proceed.
Sorry I cant give you much advice  as I have not had surgery, I have recently had some testing for bladder problems witch show the sphincter muscles is going into spasm and the urologist feels is due to my spinal cord issues.
I hope you can find the answers you are looking for and please know we are here to offer support or if you need to vent etc :)

Ray  

[amitsyrinx]

Hi..and thanks for the warm welcome

Its feels empowering to be part of a large family...

I don't have chairi. I developed syringomyelia through my first surgery scarring which had to take place since i had menigitis. So i guess its acquired.

Thanks for the suggestion - I'm now going to try getting across to the the drs on yr thread

And hope to hear from from friends who have a syrinx and shunts...experiences, advise, suggestions...everything welcome

thanks,
amit

[selmaS]

Hi and welcome to the chiari/syringomyelia forum.

Many here have chiari only, but we do have members with syringomyelia and issues with shunts.

My question is was ur syrinx acquired or congenital? If congenital were u checked for tethered cord and chiari?

I also wonder if u have something else going on in addition to ur syrinx......

The options of which shunt works best and for whom is one u must discuss with ur dr...only he can advise which is best for u...but, u may want to get a second opinion from a second dr to see which one u feel more comfortable with.

The drs on our thread may be able to assist u, but u do need to research them to find one to consider.

I am sure others with a syrinx and shunt will post a comment as well.

We r happy to have u join our little family here, sorry for the reasons u had to seek us out.

"selma"

[*Stormy*]

Hello and welcome!

I'm sorry I wish that I had some advice to give but I  don't have a syrinx, so I don't have any experience with the treatment. I am so sorry to hear about what you are going through...you have been dealt a tough hand. Do you have Chiari too?

Anyway, I thought I'd bump your question up...we do have some members here that have shunts and may be able to help you.

Take care
Carolyn