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Chiari Malformation Community
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5792451 tn?1390934690

Brain shunt scheduled for Friday

So I have been in and out of the hospital over the last month after my eye doctor discovered papilledema and hemorrhaging behind my eyes. I followed up with my Chiari specialist on the 18th and we scheduled my surgery for the first week of June, but then I ended up back in the hospital a week ago with extreme headache, vomiting, neck pain, plus I was practically comatose for 3-4 days beforehand.

Of course the symptoms are related to my dangerously high intracranial pressure, and of course my neurosurgeon is out of town AGAIN. So an entire team of neurosurgeons from the same practice took over my case and decided to schedule surgery to insert a shunt this Friday. I had just asked my NS, the CM specialist, about getting a shunt and he said no. His reasoning was that only the decompression surgery would fix Chiari related intracranial hypertension and that I have very small ventricles.

I can't imagine that an entire team of three neurosurgeons would decide to preform a surgery that I don't need, but I keep reading about how shunts are placed to decrease the size of the ventricles and that over draining them can lead to collapsed ventricles and hemorrhaging.

I'm so scared that they might be going about this the wrong way. Any advice would be greatly appreciated.
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi...I know how frustrated and scared you must be.....

My first question is are these true Chiari specialists? Have ALL related conditions been ruled out...

SO these NS's decided to do a shunt b4 trying a decompression?

I wish I was able to say if this is right thing for you....all I can suggest is to get another opinion....some Drs may do a consult with the team you are working with....

Do keep us posted.
5792451 tn?1390934690
My neuro is a true Chiari specialist but he's out of town for the next month and he's the only CM specialist within a 200 mile radius to me, and on a scale of 1-10 with 1 being normal and 10 being blind I'm at a 7.5 according to my neuro ophthalmologist. Plus my symptoms are getting worse by the day and my CSF pressure was over 40. Something HAS to be done and I don't think I can make it another month. Not to mention the team of NS suspect that the doctor who did my spinal tap botched it and I had a leak for over a week.
620923 tn?1452915648
COMMUNITY LEADER

  Yikes...I do understand something needs to be done.....and so sorry your Dr is out of town.....I know it can be difficult to get a Dr or find one close to home as I had to go out of state to get to one....

Just do not know what to say except that you will be in my thoughts and prayers ....do add your surgery date to the surgery date thread if you would like a prayer thread posted for you....

Wishing you all the best.
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