Post op surgery for Cerebral Cavernous Malformation

[heidihi]

Hello, im a 37 y/o f. Had craniotomy 3.5 mo. ago at UCSF for a Cerebral Cavernous Malformation that had bled twice in 1 wk.  Ive been having issues w/ numbness, tingeling that comes and goes along with weakness.   Today my tongue had prickely, numb sensation and down my throat. My bleed was midbrain in my ventricle and there was significant swelling. I am concerned about this numbness that comes and goes throughout my body.  Since the bleed was midbrain where are the nerve fibers go through = does that explain it? Are they regenerating , what's next? I am concerned it will affect my breathing or seeing at some point. I just don't understand at this point what is going on. I had an MRI a month ago and it was fine. These sensations just keep becoming more frequent, is this normal?

[laratterman]

Carolyn,

I was just reading your post and wanted to tell you... I have 4 cavernomas in my spine too!  The smallest is 4 cm and the largest one is 12 cm!!!  I have been told repeatedly that... "There is nothing they will do with them.  They are very common.  They will cause no problems for me."  Of course, that is the same thing I was told 14 years ago about the Chiari too!  (Whatever... idiots!  Thanks for the permanent nerve damage!)

Anyway, it's really hard to find info online for cavernomas (cavernous hemangiomas) of the spine.  You can find info about them in other places, you're right.

We need to try to remember that we share this in common and if one of us learns something, we can share with the other.

((HUGS)) and blessings!!!

Lori  

[*Stormy*]

Hello

Not that long ago, I was told that I had a cavernoma in my spine and I did a lot of research about it. I found that there were a lot of posts to do with cavernomas in some of the other forums (neurology or neurosurgery) so you may want to check out them too. The funny thing is the sensation with the tongue that you mention is the SAME feeling that I get since I had the Chiari surgery (craniotomy, laminectomy, duraplasty). So I do wonder, since we had one of the same procedures done....if that is what caused it?  Did you have any swallowing difficulties before the surgery? I had cranial nerve damage (no gag reflex) and I was told that the tongue thing may be the cranial nerves regenerating.
I have been told that Cavernomas are a lot like Chiari in the fact that some of the damage is irreversible once it's been done. Did you have this numbness before the surgery?

I hope that you get the answers that you need...I know how scary it is but has become part of my daily life dealing with all the mysteries of Chiari.

Take care
Carolyn