Help!!! I had my surgery in december 13, i did well initially post op. Ive got progressively iller over the last few months but for the last month I’ve been incapacitated. I had ICP monitoring last week an i have pressures on standing of minus 2 to minus 4, with high pressures ( all though not long lasting but longer than what should be) on sleeping and lying flat, thrown in for good measure. Neuro surgeon doesn’t seem particularly interested in this condition! He discussed a craineoplasty but said he s had little i success and the chiari symptoms could return. He s having a think and is going to discuss my case with his colleague. Has anyone had similar?? The US health system appears so much more advanced than ours, what would be the treatment options over that side of the pond. My symptoms are extensive life limiting
Allison, I’m sorry you are in so much pain. I know very little about hypotension, so I did a search of our past discussions. There are a few people with hypotension that posted discussions and may be a benefit to you, you would need to private message them and wait to hear back. From what I can gather these other gals say that hypotension is caused by a CSF leak somewhere along the dural surface- usually an unknown location, and requires a blood patch. I’ll keep looking around.
Jenn
This looks like a good one…
You don't have spontaneous intracranial hypotension without something else happening(like a CSF leak). So, either the data was wrong(which can happen since we are relying on technology) or something else is going on. Cranioplasty to replace the craniectomy? That's an unusual answer. We are missing some logical step here.
Mandy said:
Hi Allison,
Did they rule out a CSF leak? Another member here had a CSF leak after nasal surgery, and this caused hypotension. As far as I know, the surgery to repair the leak was successful for the low pressure headaches. Here's some information, you didn't describe any leaking from the nose or ears, but it could be an internal leak, and I believe can be detected on an MRI.
http://www.neurologyreviews.com/the-publication/past-issue-sngle-vi...
Best wishes,
Mandy
Thank you all. The possibility of a leak has never been mentioned, could this be the case even so many months after surgery with uncreasing symptoms. Is minus 4 significantly low? He isnt kean to do the craineoplasty but i feel i have no option, ive got no life at the moment. Ill read the articles, as im having a good day today n can concentrate. This is such a great support group. Thank u all for caring, its so hard to explain symptoms to people who havent been through itxx
Sorry meant increasing, it doesnt help when u have double vision but only when i read.
Allison, yes leaks can happen this far out from surgery and can happen spontaneously without surgery. Have you had an MRI of your head or neck since surgery- they can usually see the leak there or at least fluid collection outside if the dura. If not, surgery to replace your cranioplasty is a stab in the dark. I think you should get another opinion from another NS. Why isn’t your current NS looking for the leak???
Allison,
I am not an medical expert, but my first thought after reading your post was CSF leak.
I'm 100% sure I would get a second opinion immediately!
There is a great website that discusses CSF leak issues.: csfleak.org
Take care,
Pam
This sounds awful,be sure to find a specialist to try to help.I wouldn’t trust a reg. nero.They can do all the wrong things and make your condition worse.Hope you get the help you need.Good luck.