Cavernous Malformation Support Network

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Cavernous Malformation Support Network

Hello, My name is Patti and if you are visiting this website, we share a common bond...the fears, sadness, uncertainty and many emotions of having a cavernous malformation. You are not alone...

Location: regional-group
Members: 57
Latest Activity: May 15

From 1987 - 2010 I have had 4 bleeds requiring brain surgery.

To help bring more awareness to a cerebrovascular disorder so unknown by the general public and many medical communities, my husband & I were inspired to create the following videos @ YouTube.com:

Living With Multiple Cavernous Malformations: Patti's Journey
http://www.youtube.com/watch?v=2QhE4sAWuhc

Multiple Cavernous Malformations and Self-Advocacy: Patti's Journey
http://www.youtube.com/watch?v=5VkyiRfbAOU&feature=related

Multiple Cavernous Malformations and Deep Brain Lesions: Patti's Ongoing Journey
http://www.youtube.com/watch?v=gvtkxDFICO0

A Day in the Life of Central Pain Syndrome

http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp

Central Pain Syndrome: lives in constant pain

http://www.youtube.com/watch?v=NIG0KywCwIY

Central Pain Syndrome: I am one among 100,000

http://www.youtube.com/watch?v=JD26ZAYh9Ck


Patti's story @http://www.aans.org/Patient%20Information/Neurosurgical%20Patient%20Stories/Patti%20Gilstrap.aspx

Discussion Forum

Tell me about you!

Started by dandelionwishes. Last reply by dandelionwishes May 15. 13 Replies

When i first found out I had a cavernous malformation that was bleeding, like all of us i got on google! haha I found the AVM survivor site right away, but I didnt have a AVM (even tho i later find out it looked like i may have one AND a cavernoma.…Continue

Tired Brain?...

Started by Misti B.. Last reply by Run with Noah Mar 20. 3 Replies

My 3 yr is having a Tummy Bug and it's been a trip! My brain bled last summer and I have been recovering well but I think I'm having a tired brain day!! Can being tired lead to feeling "drunk"... shaky, jittery, choppy motions?... Anybody experience…Continue

Did anyone had a very risky surgery in the brainstem?

Started by dandelionwishes. Last reply by Patti Feb 12. 3 Replies

After being told for months now that my brainstem bleeding cavernoma was inoperable (2 neuro surgeons that do not specialise in cavernomas or brainstem lesions) i was told that surgery is my only option to make sure i will not die from a bleed at…Continue

Have any of you experienced personality changes?

Started by dandelionwishes. Last reply by frgeo Feb 10. 5 Replies

I have... one of my best friend always told me that i was "too nice" that there was something wrong with my brain and i must have a tumor or something. haha He has told me that over and over for so long "you have some abnormal circuit in there, you…Continue

Comment Wall

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Moderator
Comment by Patti on March 21, 2013 at 9:50am

Run with Noah:
Prior to my 1st seizure in 87, I felt spacy & had had a migraine earlier in the day secondary to a left parietal bleed. Fortunately since then, I've had one seizure post-op of my 1st surgery in 1988 & 4th surgery in 2010.
I take a low dose of Keppra twice a day & do ok on it.
Are you on anticonvulsants?
I'd encourage you express your concerns w/ your neuro.

Chivonne: Yay - no more seizures! :)

Comment by Chivonne on March 21, 2013 at 3:45am
In regards to Run with Noah, I always had a stomach flipping feeling then my right arm would start shaking. Since my resection I haven't had any partial seizures, which could easily number over twenty per day. Have a wonderful day everyone!!!!
Comment by Run with Noah on March 20, 2013 at 9:03pm

What symptoms have you had before a seizure occurred? When I had mine, I remember not sleeping enough which triggered the seizure according to the doctor. My concern is that I am doing something and it occurs, what should I look out for. Sometimes I get tired during the day, and I go lie down. I don't remember having a headache or feeling dizzy. I remember my daughter waking me up to sign something, then I found myself at the hospital. If my wife was not around, I probably would have woken up later and said, main that was a rough night and worked from home.


Moderator
Comment by Patti on March 18, 2013 at 9:55am

Much thanks, Ninibeth! :)


Moderator
Comment by Ninibeth Ramirez on March 17, 2013 at 12:16pm
Dear Patti, Happy 4th year aniversary on your surgery núm. 3.. May God Bless you always!!!

Moderator
Comment by Patti on February 15, 2013 at 10:28am

If you don't already receive Neurology Now, their Editor-in-Chief is requesting patient stories on what a cure would mean to the patient, or someone they know.
http://journals.lww.com/neurologynow/Fulltext/2013/09010/Funding_Re...

Happy writing! :)


Moderator
Comment by Patti on February 14, 2013 at 10:20am

Happy Valentine's Day to everyone! :)
http://www.youtube.com/watch?v=OOMF_WxumLY


Moderator
Comment by Patti on January 31, 2013 at 11:32am

Previously posted by Elizaabeth @ http://www.avmsurvivors.org/forum/topics/article-about-brave-little....
If you click on GMA's link @ http://abcnews.go.com/Health/ohio-year-thought-dying-brain-tumor-sa..., I'm almost certain the girl has a CM.


Moderator
Comment by Patti on January 2, 2013 at 6:12pm

I'm excited! to have learned today that my 'condensed' story was published on A Faces of Stroke Story‏ @ http://www.stroke.org/site/News2?page=NewsArticle&id=13103.


Moderator
Comment by Ninibeth Ramirez on December 24, 2012 at 12:27pm
Merry Christmas : )
 
 
 

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One year since my bleed, more or less

Posted by tdz103m on May 2, 2013 at 5:34am 5 Comments

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