Neurologist visit at PNI

Discussions about the illness, treatments, doctors, etc.

Neurologist visit at PNI

Postby Kj89889 » Wed Sep 05, 2018 12:27 am

Hi all,
From the sounds of this forum there are a lot of brave people here. My girlfriend has a cavernoma in her cerebellum. She is going to pacifc nueroscience institute (PNI) to get a recommendation, my assumption is it's either surgery or the wait and see approach. My questions about this:
1) If we elect surgery what is the time table for recovery
2) Has anyone ever had experience with a cerebellum surgery, I have seen not many discussions on this particular region
3)Has anyone ever dealt with PNI. I have read reviews and they were phenomenal but I didn't see much about this particular surgery should we go that route.

Any insightful tips that you give a fellow to make the process smoother for her.
Kj89889
 
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Re: Neurologist visit at PNI

Postby Elizabeth » Thu Sep 06, 2018 5:50 am

Welcome,

I'm not familiar with PNI. You can look for a second, third or more opinions from one or more of the known experts. The centers for excellence are good places with knowledgeable doctors. http://www.angiomaalliance.org/pages.aspx?content=482
Recovery time is so variable...you can't predict it really. I was quoted 6 weeks and I'm at about 7 years now...still recovering...but my surgery was difficult and complicated by a stroke...not the usual. If you get lucky and its an easy location, maybe a few months.
Cerebellum. I haven't heard much about surgery there. I only remember one person and her story was complicated. She had trouble walking afterwards but I can't remember the details...she might have had trouble before...I can't remember sorry. But each person is so different. My best advise is, get as many opinions as you need. Choose the best surgeon, if you're going for surgery. And work hard with a positive attitude in recovery.
Deciding to have surgery or not was a very difficult choice for me...and only you guys can decide what's right for your situation. Wishing you all the best!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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