Questions and Information About Cavernous Angioma

new post op things?

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OK.. I will try to help you understand.  Had Cavernous Malformation emergently operated on at UCSF.  MY CCM was in my ventricle midbrain.  Post op I did good , had many things that slowly decreased over time.  I am post op now 3 mo. and continue to have sensation of numbness and tingeling that comes and goes, I also say the opposite of what I mean to say and write it's very weird and embarrassing. For example the other day was around friends, one in particular had a small Lahasa dog that I said, "here kitty kitty" UGHHHH I was SO embarrassed! That is just one example of many! Say no when I mean yes. Will call a fork a knife, etc... Now lately I have numbness sensation between my eyes and had electricity sensatin in my nose! Weird! My right side is weak compared to left.  Anyway, I know it's only been 3 mo. but do these things last forever or what? What are other's experiences if any? Let me know how your'e doing , it's really hard to find answers to these kind of questions... I have to think about going back to work and I notice after a few hours of doing something physical, stroke like symptoms return ( weakness, slurring words, heavy arms, weak legs, heavy eyes, limp, etc...) seems crazy to me but maybe others go through the same thing.  Your all continuosly in my thoughts and prayers.
Hang in there you are only 3 mnths post op. I still have issues almost 4 years later. There are others that had surgery after me that are fine.   I don't know if there is a reason to why it's taken longer than others other than we are all different in are own special way!
Well said Becky!
You and your brain have been through A LOT HeidiHi and I'm wondering if speech therapy has been offered to you to help work through the difficulties you're having with your speech at this time?
One can only HOPE the od sensations you're having will eventually resolve.
I'm almost 6 mos. post-op of my 4th craniotomy (right thalamus, near brainstem) and each recovery has been a little different.
Does UCSF still offer an AVM support group? That would be beneficial to you if they do.
Take good care of yourself!
Heidhi,
The contact info for UCSF's AVM and Aneurysm Group is:

Aneurysm and AVM Support Group

The group encourages all patients, friends and family members to join the support group. A guest speaker will be featured followed by open discussion.

Location: 513 Parnassus Ave., Rm. C-130
Meetings: The first Thursday of the month, 6 to 8 p.m.
Contacts: Nancy Quinnine quinnine@anesthesia.ucsf.edu; Lisa Hannegan hanneganl@neurosurg.ucsf.edu; KC O'Hara kathleen.o'hara@ucsfmedctr.org

Hope this helps!
HI,

 I had surgery Apr. 01/09.  They removecd one of my CCM's I still have a couple in there.  My ventricle was blocked and I was swelling up therefore they decided to do the surgery.
One of the aspects I found difficult, and still do at times is the fatigue. I told my wife "I feel like I just ran a marathon" when I walked from the basement to our loft.  Dr. reccommended doing basic exercises (ie lunges) to strengthen.
 If I got tired I would slur a little (noticable to me) as well as a studder. These still are present.
The best thing I found to do, as have others is to know when you need to take a nap to recoup.  If you have others around, let them know you need a little rest/recoup time. If they care for you they will respect your wishes.  It doesn't mean they will understand, they just need to accept it.

** We as post op. ppl can't expeect to be 100% better within a few months or a year.  It took me a while to accept this.  Frankly I still struggle with it at times.  I know that I will continue to improve and get stronger with time and a positive mental attitude. Treat yourself good, take naps and be thankful that you have been given a second chance at life.  You have been through alot of trauma and survived! **  

Hope this helps.

Shawn M26
Hey Shawn,
My bleeds were in the same place.  I am curious to know what your symptoms were and more about your story in general...  I will keep you in my prayers.
Heidihi

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