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ModeratorPermalink Reply by William on July 19, 2010 at 6:20pm

Michael,..

AVM Rupture/BrainBleed

Date: July 28/29 2008

My age: 55

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Permalink Reply by Elizabeth Carolee on November 2, 2010 at 7:06pm

I was 9 in 1977 and that was the first signs of having a AVM in my left leg. Removal of it twice (1978/1980) and then 1996 after a pregnancy the AVM took over the leg down to my ankle. # 27 Embolization later and still trying to get the avm and heal the ulcers that has form at my ankle.

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Permalink Reply by AMM MJM on November 3, 2010 at 12:41pm

Hi Michael;
I don't know if this info is relevant or pertinent, but I just found this group and thought I would send this info on...
My son, Michael, "presented" at Age 12 1/2 with a grand mal seizure in Jan 2001. The doctors said he was born with it. His AVM was deemed to be size ~5 on Spetzler scale. We could not find anyone to treat him -- not even Dr. Spetzler himself! In 2003 we found a doctor at Johns Hopkins in Baltimore who would treat him. Still pediatric, my son had 4 embolizations that year (the first one saved his life, since they embolized a 'grape-cluster aneurysm') + 1 Gamma Knife. He was told they could not perform any more embolizations. He had another Gamma Knife in 2005 at JHMI. He was treated horribly that he refused any further treatment!!
In 2008 I prevailed in having him seek further treatment. Via a windy road, we found Dr. Eric Deshaies @ Upstate Hospital in Syracuse NY. The AVM had grown to cover almost HALF of my son's brain!! In one year, he had 7 embolizations, which have reduced the total AVM size by half. The AVM is still deemed inoperable, since it is in LH side of brain between frontal/parietal lobes, deep in the motor function area of the brain. Note: The sixth embolization paralyzed his right arm, crippling his violin abilities--DEPRESSED!!! There have been a few 'episodes' of blood circulation in the brain that have re-enabled the use of his right hand, but nothing permanent so far. WE NEED A BRAIN PLUMBER!! The road is long and windy from here. My son is now 23 and still in the first 2 years of college because of his condition.
Any further questions/coments? Write!

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ModeratorPermalink Reply by Lesley S, Queensland on November 3, 2010 at 4:26pm

My AVM was found in 2009 when I was 55 years of age. Had surgery a couple of months after we knew about it. Take care.

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Permalink Reply by Sandi Caton on November 4, 2010 at 10:15am

Hello Michael, I joined this group several yrs ago and check the site from time to time but have not been very vocal on here as I am not having problems at this time (at least of which I know) and because of going through this so many years ago I cannot offer much advice or input on what is out there today to deal with AVM's. My AVM was diagnosed in March, 1974 and I was 20 yrs. old, it is in my neck, tongue and floor of mouth. My last major surgery was in 1985, so I have been really blessed. I do not have a Dr now as mine has retired, Dr Milton Edgerton at University of VA Hospital. At that time, no one knew what to really do with me, and Dr Edgerton came to me and said he thought he could help, he was such a caring Dr.

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Permalink Reply by Armand on November 4, 2010 at 8:58pm

I don't think I answered this one before. If I did, please be polite and put up with me.

I had my operation in March 1989 when I was 32 years old. So, I have to call you a young punk. However, from today, these differences are minor. Color TV's were still a new phenomena, about 20 years old. Computers were all mainframes. PC's were only seen in cartoons. AVM was a new concept that really hadn't been proved.

Compared to most people, I've done well. However, it has not been a 100% recovery like yours. Mine is more in the 40 to 90% recovery depending on the mental functions. The personality has made a major change, but still hanging in there.

Before the operation, I thought there was no bleeding. However, recently I've read the surgeon's report and they did find a lot of dried blood.

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ModeratorPermalink Reply by Louisa on November 7, 2010 at 9:54am

Wow...I think I am the oldest person who found out she had an AVM. It was discovered in 2006, my age was 56, I was treated from age 56 to 57 and then I had a brain bleed and a craniotomy in 2007.

So am I the oldest person discovered with an AVM and lived?

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Permalink Reply by Anne on November 9, 2010 at 2:17pm

Hi Michael,
Very interesting survey. My AVM was discovered in 1996. I was 39 yrs. old. I had a seizure at work and nobody knew what was wrong with me, so they took me to the hospital. After several tests, they determined it was an AVM. It was in my right occipital lobe. I had a crainiotomy and lost 50% of my vision-on my left side. I've been on tegretol for seizures since then. I had one seizure right after the surgery and didn't have any until about 2 weeks ago. It was rather alarming after going so long without having any.

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Permalink Reply by Annie Smith on November 10, 2010 at 1:48pm

I was 25 when i found out about my avm it was back in 2008. I woke up all disoriented and my ma called them ambulance and i was rushed to the hospital. They did a head CT and found the AVM in my frontial left lobe i believe. They had to do emergency surgury right away. I have been since then and i thank god everyday for a fast and speedy recovery

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Permalink Reply by Linda Skladal on November 12, 2010 at 11:16am

i was 35 years old and i had my AVM in january of 1990. I hope this helps
Linda

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Permalink Reply by Emily Abelha on November 14, 2010 at 6:59am

Morning,

I discovered my AVM on May 27, 2010 I was 31 yes old. Dr's gave me 3 options. 1. Gamma Knife 2. Aruba Trail or 3. Leave it alone and monitor.

I decided to leave it in God's hands. I'm currently on No meds and feel better than ever. Glory to to God.

God Bless you.

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Permalink Reply by elle woolley on November 14, 2010 at 1:29pm

Michael,
first off let me tell you how hopeful you made me for sharing that you made a full and complete recovery! congratulations. may i ask you what your impairments were, and how long it took you to recovery, and what things you did to ensure your complete comeback?!
i had a major bleed in 1999 at age eleven. i am now 22, and still have severe impairment of the left side. i have a noticeable gait, no control of my left ankle and foot, very little movement in the left arm and virtually nothing of the left hand. my entire left side still has the sensation of novocain, and i have a bad left field cut in my peripheral vision. any and all information would be greatly helpful! thank you
elle

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