Grade 5

General
1

hi is there anyone out there who as a grade 5 avm and its inoperable???? we have just got to live with my daughters who turned 17 2 days ago avm i just feel so worried all the time been told she can never drive and future pregancys makes it increased risk off bleedin anyone else in this situation

many thanks

lisa xx

2

Hi Lisa, Don’t give up hope! When Chari’s (wife’s) large AVM showed up nearly 25 yrs ago, she was told to go home and try not to think about it, cuz there wasn’t any way to fix it.



About 20 yrs ago, we started looking again for potential treatment. UCLA said not to do anything and Stanford said come on down and we’ll fix it! It took about 6 embolizations, two Proton Beam radiations, a surgery to fix an aneurysm, surgery to remove the reminents of the AVM, and finally surgery to correct foot drop, which she had developed along with one of the embos’



Her AVM is now GONE. So I would encourage you to keep looking, at least every few years. By the time she’s ready to start a family, technology might have progressed where her’s can be fixed with reasonable risks.

Best wishes,

Ron, KS

3

thanks ron for ur reply we av saw about 4 doctors so far and a load more have saw her angios but all sayin its just to deep and big in her brain to treat but have said in the future with technology someone may be able to do somethin..and its nice to hear about ur wifes happy ending too

many thanks

lisa

4

Hi Lisa,

There are at least two things you can do before you have to accept that the AVM is inoperable. First, make sure her MRI results have been or will be seen by someone who specializes in AVMs–a plain old neurologist doesn’t always have the skill in diagnosing these or familiarity with all the different treatments. Second, even after one expert has viewed them, bring the films to another expert who specializes in different treatments. A surgeon might say it’s inoperable, but someone who does radiation or embolization might see a way to treat it.

Good luck!

5

Hi my avm was a grade 5 when they found it. It was 5 cm located in my left temporal lobe. I have had 2 embolizations and 2 gamma knives. I was pregnant with my son and lucky nothing ever happened. We didnt know of the avm then. Now we are still waiting to have a 2 nd child (are son is now 7). I know that even when the avm is gone I will be high risk for pregnancy. where is your daughters avm located? What size?

6

JH you bring up a good point.

If your records / films are reviewed by a surgical center, their answer might deal with the surgical aspect only. That's why I feel it is very important to have your records reviewed by a TEAM that works together all the time. When the whole team reviews the stuff, then they can discuss/debate about what is the best course(s) of treatment in your case. Plus you get collaboration, such as "Let's do X number of embolizations, then see if it's ready for surgery or radiation."

You want a good team on your side doing the best that is available for YOU.

Best wishes,

Ron, KS


JH said:

Hi Lisa,

There are at least two things you can do before you have to accept that the AVM is inoperable. First, make sure her MRI results have been or will be seen by someone who specializes in AVMs--a plain old neurologist doesn't always have the skill in diagnosing these or familiarity with all the different treatments. Second, even after one expert has viewed them, bring the films to another expert who specializes in different treatments. A surgeon might say it's inoperable, but someone who does radiation or embolization might see a way to treat it.

Good luck!
7

Hi Lisa,

I just want to lend my support to you guys. It sounds like you guys have received discouraging news, but have you sought 2nd and 3rd (and maybe even 4th opinions)? You just never know what is out there. I have also been told mine is inoperable (in the brainstem), and I am still searching myself. It's not easy. But dont lose hope! Can you suggest to your daughter to come on here- she may find it comforting to talk with others who have been in similar situations. I will keep you guys in my thoughts and prayers and know we are here for your support.

Patti

8

Hi Lisa. As long as you are alive there is hope! I have seen so many medical miracles over the last now…yikes almost 23 years. Please do not lose faith! I will be praying for you and your daughter!

9

thanks all for replyin

georga avm is 6cm big its a the posteiror frontal pariental avm.i have so far saw neourosurgeons neourologist another neourosurgeon also a neororadiologist have all said no its to big and deep to treat and if they did she would more than likely never walk again and could affect her speech so this is the position we are in just preyin that she dont get worst as she already showing signs off this horrible illness thanks for replying just wished there was someone out

there who cud help av sent so many letters to america paris everywhere in england but still no joy

many thanks

lisa

10

I say bullpucky. My son’s was huge. His aneurysm took up a 1/3 of his head and the AVM was the biggest ever found at the time. It took 2 angios( 16 hrs and 18 hrs) and a shunt placement. His was a vein of Galen AVM. The aneurysm was pushing on his brainstem and his AVM stretched from the top of his head to aneurysm and from just in front of the middle of his head all the way to the back of his head. And his brain was pushed all out of whack. He’s missing some parts of his brain because there was no room for it to grow. His vein of Galen was the size of a McDonald’s straw. It’s normally the size of a coffee stirrer in an adult male. My David was only 3 months old when his was found. The docs gave him a 1% chance of survival WITH the surgery and a 1-3% chance of normal out of that 1%. We got our miracle. Now he has a titanium golf ball in the middle of his brain made out of those itty-bitty coils. I don’t think any AVM is inoperable just docs scared to try. I totally get that they don’t want to do any harm but the not doing anything can be just bad. Was I supposed to just watch my son die because some doc said it was inoperable. Which several did and 1 even said that it wasn’t worth it because David would just be a lump in the bed afterwards. It took 5 people 4 days to find someone willing to help. Only god knows how many people they called. And we found out a couple of years later that he had a bleeding disorder which now makes things worse. Don’t give up hope and keep looking. Things are always changing and technology just keeps getting better.

11

Forgot to say that his aneurysm was the size of my fist, about 2 inches x 3 1/2 inches. And his AVM was 3inches x 3 inches x 3 inches. And yes I said inches.