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Avatar universal

Complications

My son had decompression surgery 3 weeks ago today and had to have an additional surgery the next day due to fluild build up and there was still compression...he came out of the 1st surgery and could not swallow or speak..we were told that the cranial nerves had been stunned and will return....now he has developed fluid around the skull again and we will find out tomorrow what will be done...anyone else have this type of nightmare after their decompression surgery??
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

This is not uncommon but does not happen often.....there can be several reasons for this.

Sometimes we Chiarians have underlying conditions related to Chiari and are not found b4 surgery.

One of them can be ICP- intra cranial hypertension...basically too much CSF is produced....

Another possibility is Ehlers-Danlos....the excess fluid could be the result of rejection or infection....if he had a dura plasty, he may be rejecting the patch.

Chemical Meningitis is yet another.

May I ask where he is, and who his Dr is?

How was ur DS DX'd and what symptoms did he have b4 surgery?
Helpful - 0
4816750 tn?1368804670
Hello and yes UI had a very intense complication.  I am sorry your son has to go through this.  I know it can be scary and He is in my prayers.  You can read my journal and it explains alot of it.  I had surgery and after I could not control any of my limbs, couldn't walk or eat.  I basically had to learn everything over again.  I am better today  It took me smonths of therapy but I learned to walk agin and everything else.  My surgery was july 25, 2012.  If you need to talk let me know.
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Avatar universal
I had this too & had chemical meningitis.  My dr was a great neurosurgeon in my area for the spine so he did my decompression.  Long story short, he did a very old procedure from cave man days which caused a lot of fluid on my brain to the size of a grapefruit.  Along with the meningitis I was in so much pain I thought I was dying.  When I finally did research & ended up in NY at Chiari Institute,  they said it was a fluid mess & the patch was leaking as well.  They also said because of the fluid & a high pressure of fluid (from a spinal tap) I needed a shunt to keep the fluid draining off my brain.  They did that the first day & redid the decompression the second day & I had very little pain & felt great.  It was an amazing difference.  I'm not sure if some of my complications could be happening with your son, but it could be.  Good luck & blessings to you & your son.
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Avatar universal
Thank you for your response...after 2 decompression surgeries, a lumbar drain, and now a shunt...hopefully we will be going in the right direction....he had chemical meningitis as well...a real tough experience
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Yes, it can be...this is y I tell so many do not rush to try and get back to a "normal" life as it can cause set backs and we do not know how ur body well respond to the surgery...so many Drs will say u will need X number of weeks and then u can go back to this or that...all b4 they do surgery....I think they need to wait and see how u do b4 they can say how much time u will need....as I feel it put pressure on the person recovering to do more.....just not right.

   Prayer to ur DS and do keep us posted on his progress.
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Avatar universal
Thank you so much!!
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