AVM Patient Updates (previous Forum visitors)

[dpcosteajr]

I believe I recognize at least one member here from back when I first posted my story! I am the 39 year old guy from Las Vegas with an AVM first detected in May of 2005 and then treated with Gamma Knife procedure in September 2005.

I wanted to return to BrainTalk and let anyone who remembers me know that I am doing very well and the GK results are very good! I just had a 18 month follow-up with a neurosurgeon in Norfolk, Virginia and she stated, "it could not look any better. Come back in a year."

My AVM was small enough to be eligible for Gamma Knife and located in the right-rear side of my head, an area I am told is related to vision (sight). It was treated at the Gamma Knife Center at Sunrise (Hospital) in Nevada and I can see "clouding" at the same location in the MRI pictures. The doctor said my AVM is on the way to Thrombosis (sp?).

I invite other former members to the AVM board to reply to this Thread with status updates of their own.

[Cry Tears]

Hi there...glad you found BT back and running again after such a very long time being down.
I don't remember you from before...My AVM was intestinal, so not the trauma/drama such as the ones in the head where most of them grow.
I don't mean to sound unkind when I say trauma/drama....just that on a scale of severity, mine was rather nil compared to those who've suffered this in their brains...why my body "chose" my intestine instead of the usual spot, the brain, no one will ever figure that one out...but they say "you have one, chances are you have others somewhere in your body".
None the less, I did suffer greatly as I was always having blood transfusions and not enough oxygene to feed my brain...so many years of this was a virtual nightmare! So many doctors were dismissive and downright mean to me when they couldn't find the cause of my bleeding...one even claimed I was doing to self:( ...I put the pathology report right in his face!:mad:

I feel soooo blessed that mine was just in my small intestines...but it did wreak havoc with me for 2+ years when they couldn't find the cause of my severe anemai...I've posted my story here in this forum.
Wow...that is awesome that the GK worked well for you...but the word "Thrombosis" bothers me....is this going to be a problem down the road?
I sure pray not!
Just glad you're around to post again and doing so well!
Blessings, Cheryl
This forum is rather slow...no one has ever posted a reply to my story...guess my AVM doesn't merrit comments.
Keep checking back and keep on looking up!

[vtgardener]

I'm nearly 2 years out from my AVM surgery which was done Sept. 2005. They found the AVM May 2005 when I had a Grand Mal Seizure out of the blue while out walking one day. Woke up in the emergency room combative and tied down. A blood leak in my brain from an unknown source caused the seizure. They found an AVM. While it wasn't bleeding it's all they could find. Made me wait 5 months and kept me on Dilantin which I just hated before they did surgery. I lost my job and was unemployed 19 months. I lost my confidence. Now I work making half as much as I used to make. I developed headaches post-surgery and while they've changed I have them still. I've had CAT scans, had an MRI last December. They're all ok. I'm having a sleep study done in 2 weeks. They tell me I have nocturnal migraines and have put me on Topamax, an anti-seizure med. I am not happy about that. Frankly, I'm not convinced they fixed the problem. They fixed what they found they could fix. Most days I feel like it's only a matter of time before my head explodes. It's a good thing I love Jesus and have my affairs in order.

[Cry Tears]

VTGardner...sounds like you're having more of a medical-nightmare than one can handle...yes I too beleive in Jesus...our only hope!
Without that hope life seems pointless...especially for those who've lost their health and fall out that comes from that as well.
If you don't have a family that deals well with truths, you'll lose them as well. I know this from personal experience.

The medications I've had to take has caused not only a personality change within me....my self esteme and depression plummetted to all time low.
Its the usual struggle most people have with losing your health.

I'm not able to work, so only get SSI, but "lucky" my hubby is supportive, loving and has a good paying job for "just enough" to cover basics.
Lots of people don't even have this much...so I must keep this in mind whenever I feel sorry for self too much.
There's always someone else who'se got a story that pales mine.
Hugs to you...I pray they find the source of your suffering and can be fixed soon...Don't want to just say "hang in there"...sounds too cliche'.
But I will say "The Lord is close to those who're suffering and He holds us close to His heart and mourns along with us wishing we too could have better health".

Because the laws of nature takes precedence...miracles are far and few between, but not impossible.
Lets pray that you also recieve a miracle blessings and the doctors find answers and can help you.
I suffered severe anemia while my AVM leaked into my gut...only by "accident" did they open me up, then found the AVM.

But I don't beleive in accidents! I beleive the Lord said "She's suffered long enough"! and the pill camera got stuck inside me,
forcing them to open me up, and finally finding/fixing the cause of my anemia/bleeding.
But not before suffering 2 =1/2+ years.
Blessings, cheryl

[benmunoz]

I wish I had found this forum when I first had my AVM. In the meantime, some fellow survivors developed another forum site located at http://www.avmsurvivors.org. You might find some additional information there.

Sincerely,
Ben Munoz
http://www.avmsurvivors.org