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Avatar universal

I'm living in a nightmare.

I'm 37 years of age.  On or about 2011 & 2012 I had Vascular Surgery.  In 2014, my gallbladder ruptured.  My headaches and back pain increased.  A month later they found out my L-4& L-5 were ruptured.  Spine Fusion Dec 2014. Was DX with Arnold Chiari Malformation Type 1 End 2015.  I had Brain Decompression surgery July 2016.  December 2017 I had VP shunt placement surgery.  May 2018 VP shunt revision surgery.  October 2018 Occipital Nerve Stimulator Implanted.  January 26, 2019 VP shunt revision surgery. During the period of March 2019 - July 2019 my intracranial pressure was registering between 23 - 36. On July 10, 2019 LP Shunt Placement.  My vascular issue is recurrent, notice with the Diamox veins deflate and become non existent.  I'm currently on Hydromorphone for pain, Gabapentin, Methocarbamol. The headaches are really really.  My ventricles are completely, basically non-existant.  Intracranial pressure is down but the headaches are at an all time worse.  My lower back pain is crazy bad.  I lost tons of water weight after LP Shunt Placement.  Recently they change the setting back to 2.0 on the LP Shunt and I started to retain liquid again.  Back on Diamox.  I have a new herniation in the hind brain.  They are unsure if to redo brain decompression surgery.  I have started to look for alternate Doctors.  This new Doctor suggested they remove the occipital stimulator and do a brain stimulator to help control pain.  It's a real invasive surgery and my neuro surgeon was hesitant.  A third Dr. suggested there may be a leak.  Every single physician has said something different.  I'm at lost point.  The pain does not decrease.  Has anyone else been through something like this?  
2 Responses
Avatar universal
First off I’m so sorry you’ve been through so much. Sure does sound like a nightmare

After my first decompression I was diagnosed with high ICP and put on diamox for well over a year. I know that pain all too well. Most of my symptoms came back with a vengeance and went on to surgery 2. That was supposed to include mesh plate and hardware removal. During that surgery it was discovered that my brain tissue adhered to the mesh plate and was woven into it pulling my brain down. Also almost completely wrapped around the 4th ventricle so I had almost no CSF flow. That surgery was rough. And symptoms are again returning.....

I also have EDS and that can cause rejection of foreign objects which makes me wonder if that could be what’s going on with you and the shunt issues.

I would strongly suggest a specialist to take a look at you and hopefully put those pieces together
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum
I too am so sorry you are going throught all of this.....it's sad, but there are not that many Drs that are well informed or educated on Chiari and comorbid conditions. Like Kerri said ,it could be a related condition like Ehlers-Danlos, since the body is more apt to reject foreign matter, and use CSF to flush the foreign body out....this is why I believe so many develop IIC post decompression surgery.....whaat type of patch was used? And did the Dr rule out EDS prior to surgery, or other conditions?
You deffinitaly will want to research your next Dr to be sure they are not only well informed but expereince with Chiari and ALL related conditions.

I know my answer wasn't hepful....but I hope you can take what I say and use it to your advantage. Keep us posted on your progress.
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