Hello all. It's been a while since I've posted. This may be totally off the wall question but I really wanted to know. Does any else who has been diagnosed with Moyamoya also have intracranial hypertension (aka pseudotumor cerebri)? I'm not new to moyamoya or this board however after many tests, I just got diagnosed with intracranial hypertension. Just frustrated and overwhelmed right now and wondering if anyone else suffers from both.

Reagan

Hi Reagan,
Sorry to hear of your new diagnosis. I've never heard of it. What are the symptoms? Can it be cured? Sending prayers.
Kim

Kim,

Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. As to if it can be cured, not as of right now but there are treatments to help alleviate the symptoms. I am on the lovely drug Diamox daily but have to be careful because of the moyamoya. Trying my hardest to avoid a shunt being placed to drain the spinal fluid. Was just curious if anyone else has had both. I figured probably not but I thought I would throw the question out there.

Reagan

I don't know if this helps but my sister got a marsa staff infection following her last surgery and her incision was leaking spinal fluid and wouldn't heal so they put in a tube to drain the fluid  and removed it that way. i guess your body makes more daily which is something i did not know maybe your body is making too much for some reason, hope this helps a little, Amiee

Hi, Reagan!

I was at the MM gathering in Philly earlier this month, and I remember them mentioning Diamox, but I wish I could remember the specifics of what they said!!

I see you live in the south, can I ask if you are a patient of Dr. Scott or Dr. Steinberg?  They were both presenters at the gathering, and I'm fairly sure they both mentioned Diamox in their presentations.

The reason I ask, is because if you aren't a patient of either doc, maybe it would be a good idea to consult with one of them?  I know several folks at the conference chatted with them at the conference, and they are both very willing to offer second opinions to folks, even post surgery!! 

Just a thought - not telling you what to do, but thought it might be helpful for you to know that Diamox did come up at the gathering!

I hope that helps!
Kristen

Kristen,

Thank you. I am a patient of Dr. Steinberg's. My neurologist has been in contact with him and I haven't allowed them to do anything without his consent. Just frustrating on my end. I have so many questions. From my understanding the two are unrelated. They just happen to both be in my brain. One day at a time. I wish I could have been at the conference but my daughter had her dance recital that weekend. Thank you for your reply.

Reagan