Neurenteric Cyst with a Syrinx Sac

Hello. I was diagnosed with a neurenteric cyst with a syrinx sac above it and this irritated the cyst. I was a healthy 51 year old who had not symptoms until on a vacation where we were outside quite a lot in the cold November/December snow. I thought I had frost bite on my feet, and when I came home, my doctor decided to do an MRI just to be safe. I was diagnosed on December 18, 2009. I was told to have surgery on January 7, 2010 because if I waited longer, I could be paralyzed. The cyst was removed completely and the syrinx was drained. It has been over a year and a half now and I am doing better. I still have horrible pain in my feet constantly and my neurosurgeon says that there is nothing that can be done. He doesn't know if this will go away or not. So my question is do you know of anything that can be done, or a doctor/surgeon that I should see? I can travel anywhere in the U.S. and am just wondering if there is anything else to do or if anyone has gone through this as well. Thanks for the help in advance!

[selmaS]

  Hi and welcome to the chiari forum.

May we ask where ur  neurenteric cyst was located?...I am going to assume it was the cervical spine?? or some where in the spine and not an intercranial one.

As with nething involving the spinal cord, it is possible to have lasting effects from nerve impingment.....

This is a congenital condition just as chiari  is...and I wonder were u checked for chiari?,...
Tethered cord?....ehlers danlos?,.....

U may want to see a true chiari specialist as they also treat syringomyelia (syrinx)...and they may be better able to guide u as to pain management and or other treatments.

   "selma"

[rod44]

I agree with Selma, a NS who deals with Chiari & Syringomyelia would be your best bet.

A Neurenteric cyst is very rare, I understand there is a high incidence of the cyst re-growing if it is not completely removed, complete removal of a Neurenteric Cyst is difficult if it is deeply embedded in the spinal cord.
Have you had a follow up MRI?
Have you other related issues such as fused vertebra or spina biffida?

Ray

[ill13632]

I have a neurenteric cyst in my clivus that is growing from 1.0-1.3cm also and is eroding my cortex.  can this be completely removed?  I also have pain in my feet sometimes and memory/thinking problems/language problems, headaches
the MRI said that chordoma is not ruled out- the median survival for that is 7 years only

[ill13632]

I don't know if this applies (i'm not a doctor) but a friend of mine had laproscopic hernia surgery and it was a bad failure it seems because of the laproscopic method and not being able to have a wider field of vision

[ill13632]

i mean can even mathematicians really visualize in 3 dimensions that well?

[selmaS]

  U may want to try another forum that deals in brain tumors, this is the chiari forum and there are no Drs here to answer ur question....we share what we have learned regarding our condition and related conditions.

http://www.medhelp.org/forums/Brain-Pituitary-Tumors/show/307

  

[rod44]

I am not a doctor and agree with selma that you should look at other forums but I do have a NC and because of the rarity of these cysts I have had to find out about them myself.
Neurenteric cysts are congenital slow growing benign cysts. They are extremely rare, some estimate . Research evidence has shown a high risk or re-growth if the cyst is not fully removed.
Other risk factors with these cysts is compression of surrounding structures. There is a risk of the cyst contents leaking and irritating the Cerebrospinal fluid (CSF) and meninges (meninges = the membrane surrounding the brain & spinal cord) leading to meningitis.        

[ill13632]

I was having stiff neck and flu symptoms and thinking problems
I also have central sleep apnea where I stop breathing in my sleep that seems to be related to this neurenteric cyst
my MRI said that a chordoma is not ruled out and my NC is eroding my cortex.  the median survival rate for chordomas that I read on the internet is 7 years

[ill13632]

what is the best way to diagnose or analyze these cysts?  is a MRI or CAT scan better?