Monday, 9 May 2011


Hi everyone, just a little update to how things are with myself.
As most of you know, i am still having a lot of symptoms after decompression. Headaches, memory loss, vision problems, speech, pain, seizures, drop attacks, the list goes on.
I had a full MRI done in December 2010 and was told by my Syringomyelia nurse that my Neurosurgeon could do no more for me and that he was happy if i wanted to get a second opinion on the matter ? ( why would he say such a thing if he was so sure ). Anyway she basicaly told me that he could do no more for me surgicaly ( good news for me ).
I took the liberty of purchasing a copy of my MRI results . The reults are as follows.


The small Pseudomeningocele at the craniovertebral junction is again demonstrated and appears unchanged since previous examination. The previously documented syrinx is no longer visible. The cord returns normal signal throughout the cervical, thoracic and lumbar region and the roots of the cauda equina appear unremarkable. A small posterior disc bulge is noted at L5/S1 level. There is however no evidence of neural compression.

That all sounded fine to me and i took it as gospel.

I recieved a letter from my NS in March , at the end it said " all i can do now is reasure Darren that he is not harbouring any serious or sinister disease process and i do not think that any further neurosurgical procedures are appropriate. If Darren wanted to meet with me and discuss matters face to face , then i would be happy to arrange a further appointment for him ".

I dont know if its me just feeling a bit touchy , but i found that bit of the letter very condecending.

I rang up his secretary and have booked a appointment for June and i will find out what can or cannot be done with this Pseudomeningocele, and could this be the cause of my problems.

From Wikipedia, the free encyclopedia
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A pseudomeningocele is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.

Pseudomeningocele may result after brain surgery, spine surgery, or brachial plexus avulsion injury.

Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.


chiari 1 malformation said...

I am going in for surgery this week and hope I do not develop this condition. Thanks for sharing.

Anonymous said...

Hope you provide an update of your condition. I was diagnosed with CM in May 2012. Going on a year later, they're still running "tests"...I've gone through a myriad of feelings about surgery, and have decided there are certain things like syrinx and perhaps the meningocele you describe. I think our brains were not meant to be broken into, and that it's even harder to put it back together after properly after you do. My guess is that it's not real likely that any doctor can get it right using present technology. However, I can't really have CSF building up in my spine, rotting it from the inside out. It seems that we have to make the best decisions we can out of a lot of bad choices available. Wishing you the best with yours,