Please help with severe post op complications!

[Deeza07]

Hi everyone...I'm a long time lurker but don't often post.

I had surgery for chiari in June 2014 and have had many complications since. I've had many CSF leaks, hydrocephalus and shunt revisions. I've just had surgery no 11 in late July as symptoms were returning. It was found the dura patch was stuck to my brain, there was scar tissue twisted around my brainstem pulling it out of place and also the old synthetic patches had started to deteriorate. I'm in Australia, and here we have only 1 specialist, so I went to him for the surgery - the old patch was so stuck to my brain he couldn't remove it all, which he'd never seen. I also ended up with another shunt to drain fluid between between my ventricles.

So this was 8 weeks ago tomorrow. I've gone from feeling 90% a couple weeks after surgery to now feeling rotten. The vomiting has steadily increased and I'm now on day 7 of not being able to keep much down. I went to emergency a few days ago, but they couldn't find anything wrong in bloodwork or scans. They contacted my NS (he's interstate) and I started a 5 day course of steroids. It helped for a day with the vomiting, but the nausea stayed. I finished my last dose this morning, and I'm no better. I've lost 5 kilograms, thats how bad it is.

I've been in touch with the staff that work for my NS, but honestly it's a waste of time. I get nowhere, my calls and emails go unanswered etc. I don't know what to do anymore...I'm so miserable and it takes all my energy just to shower, let alone maintain a household.

Has anyone had problems like these and can share their experiences? I'm feeling alone in all this.

I'll add in also, NS suspects EDS also but it's not confirmed - just in case it matters.

[Initwithyou]

What medications are you on?  I also had a patch attach to my brain and the chiari specialist had to leave it on there as well.  I was also very sick with vomiting after my second surgery.  It turned out for me it was the mixture of medications....turns out I can't do Diamox well...or a couple of the other medications.  One was a barbituate.  I hope you find answers.

[selmaS]

  Oh it matters if you have EDS it could explain the patch fusing with your brain tissue and the excess CSF that requires a shunt !

When you have EDS you may reject foreign matter...ie- the patch and shunt! So your patch should be made with your own tissues....this should lessen leaks and rejections....but scar tissue is common with EDSers....but the synthetic patch may have encouraged that to form. JMHO

Were any other related conditions ruled out? POTS, syringomyelia?.......

[Deeza07]

Thanks Selma. My new patch is my own tissue, thank goodness. No Syringomyelia or POTS. Hopefully this vomiting isn't my body rejecting the new shunt.

I'm now on day 10 severe vomiting. I saw my doctor again this morning and had more blood taken and I hand in a urine sample tomorrow. But honestly, he's baffled. It's left me in a really tough position...if I don't start getting better or no answers are found, I don't know where to turn next.