Brain AVM Surgery

After finding 3 aneurysms in my brain after a CT scan in April I was sent to a neurosurgeon who did another CT scan and also found an avm in the back of my brain. He says it should be removed as it is probably contributing to at least one of the aneurysms. I have an appointment with him on Monday to talk about the surgery. The thought of them actually cutting open my skull and going into my brain really scares me.....I guess because I just don't know what to expect. Would be interested in hearing from others about their experiences.

Piece of cake; no worries, no pain, NOT! (sorry, poor joke)

AVMs are often referred to a ticking time bombs, but to me, an aneurysm is a ticking time bomb with a short fuse--that's just my opinion, understand. But when the neuro team at STanford saw an aneurysm on Chari's scans following one of her embolizations, the DR said "it will be silly to do the embolizations to try to fix the AVM and NOT go after the aneurysm. So she had surgery to fix the aneurysm amongst 4 or so embolizations.

As scary as brain surgery is, I don't it's as painful say as abdominal surgery. There aren't muscles that they are cutting. Assuming no deficits from the surgery, you should be up and walking within two days (my guess). Our son had two brain surgeries to correct seizures. After the 2nd, he was in ICU maybe two days, then a day or two in a regular room, and discharged. He had to take it easy for a few weeks, and of course, protect his head..................

Biggest complaint I heard from wife and son was from the incision in the scalp itching.

Key thing to consider to me is how many of these has your team fixed? For us, if they haven't done hundreds of these surgeries, I'd look to go somewhere else. We wanted teams that worked ONLY on these types of issues. Also,based on the area he's going into, what functions are controlled by that area, hence, what are potential deficits?

It's super scary, but I suggest getting all the data you can, ask all the questions you can, then sit down and evaluate your options.

Best wishes,
Ron, KS

Hi Cheryl, I am both welcoming you to our awesome support group, holding down the western edge of PA in New Castle, and responding to your discussion. As a matter of fact, today is my 40th anniversary of craniotomy one of four at age seventeen. I'm going to include a poem (I'm internationally published) written for my neurosurgeon and a summary of how he successfully removed my huge AVM and saved my life so I could be here to help others cope. I will upload it momentarily

Rob Forsythe

351-HomemadeChristmasone.txt (2.49 KB)

Hi Cheryl,

I had a crainiotomy in November of 2011. I was under for the procedure, so had to read about it from my records. My surgery was at the back of my brain, the cerebellum. It seems there is a flap near the base of the skull that is removed to allow access to the brain. It's much thinner than bone but not cartilage. I believe it is called the dura. After the surgery, this is replaced by the surgeon.

My understanding is, at least in my case, the skull is not cut into. Be well.

Greg

Hi, Cheryl,

I've got an AVM + aneurysms, too. My AVM was discovered in April 2011. One of the aneurysms was discovered during my first Gamma Knife treatment for the AVM. The 2nd annie was discovered (and clipped) during the craniotomy to clip the first one. Since then, I've had 2 additional GK treatments for my AVM.

The thought of brain surgery is kind of scary. However, in my case, it wasn't quite as bad as I thought it would be. I was able to have my first GK and the craniotomy during summer break & was back working again for the teacher inservice days in mid-August last year.

The hospital had me walking the day after surgery, and I was home 3 days later. Two weeks after surgery (the day my stitches came out), I was at the HUGE dog show held in Hoston every year (5 day dog show). I borrowed an electric wheel chair to get me around the Reliant Center for the show. I wore my self out that day & spent the next day in bed, but was back for the last 3 days of the show. Four weeks after the show, I started attending dance classes again. Seven weeks after surgery, I was teaching.

angie

Thanks Ron. That's why I have the appointment with him on Monday.....I have ALOT of questions I would like answered before I agree to the surgery.

Hi Rob, thanks for the welcome and the information and the poem.

Hi Greg. I'm not sure of the exact location but my doctor said he will have to cut out a piece of my skull to get to the AVM. Did you have any major after effects from yours?

Hi Angie! Thanks for the response...just praying I get along as well, I can't afford to be off work for too long.

Thanks Ninibeth. Hope mine turns out as well. I'm sure alot of my fears are unfounded and I'm just praying all will go well.