22 years old march 2006, first bleed, misdiagnosed as a stroke from a blood clot. 24 years old, august 2008 seizures started and surgery was performed two days later. i am now 26 years old, and my left side is still physically recovering from paralysis caused by the craniotomy
I was four years old when I had my bleed. It was in 1980. I was in pre-school when it happened.
I was 29 yrs old when I had my first bleed. I know technology wasnāt what it is today. Mine didnāt show up on a CT scan! Finally, in 1986, the neurologist I had finally sent me for an MRI. He looked at it & said nothing was wrong at the time, but when he read the radiologistās report, he was very serious about it! On the Angioma Alliance website, the founderās daughter, who was a baby at the time, had 13 AVMāS in her brain, all of them arterial, which were removed surgically.
The Website is angiomaalliance.org.
Connie the leader might be able to help you.
Jan Verstraete said:
My AVM ruptured in 1982 (March 7). I was 18 at that time. I had a craniotomy in 1982 and this was followed by 2 embolisations in 2005 and 2006.
Jan Verstraete
Michael.
At the time of my bleed (Sept 2009) I was 24. Best wishes on your book.
Age 27 in 1985. Suffered headaches since childhood, no one took it too seriousā¦active child regardless. Cran in 85, thought they got all of it. Pain continued. 2009 stereo used to try to kill the remaining of the avm which was found. Return to doctors in Sept this year to see what process has/has not been made.
I was nine (1995) when i first started feeling pain in my hand. Since then Iāve had multiple surgeries and procedures to reduce the pain and discomfort.
My nephew was 10. He is still having problems.
14 years old (in 2007).
Oops, fixed the typo.
Kathryn Colette Hemenway said:
My nephew was 12. He is still having problems now he is 15. His mom, my sister, died two years before it happened.
Michael,ā¦
AVM Rupture/BrainBleed
Date: July 28/29 2008
My age: 55
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.
Hi Michael;
I donāt know if this info is relevant or pertinent, but I just found this group and thought I would send this info onā¦
My son, Michael, āpresentedā 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 ā 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 āgrape-cluster aneurysmā) + 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 sonās 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 abilitiesāDEPRESSED!!! There have been a few āepisodesā 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!
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.
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 AVMās. 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.
I donāt 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 TVās were still a new phenomena, about 20 years old. Computers were all mainframes. PCās were only seen in cartoons. AVM was a new concept that really hadnāt been proved.
Compared to most people, Iāve 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 Iāve read the surgeonās report and they did find a lot of dried blood.
Wowā¦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?
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. Iāve been on tegretol for seizures since then. I had one seizure right after the surgery and didnāt have any until about 2 weeks ago. It was rather alarming after going so long without having any.
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
i was 35 years old and i had my AVM in january of 1990. I hope this helps
Linda
Morning,
I discovered my AVM on May 27, 2010 I was 31 yes old. Drās gave me 3 options. 1. Gamma Knife 2. Aruba Trail or 3. Leave it alone and monitor.
I decided to leave it in Godās hands. Iām currently on No meds and feel better than ever. Glory to to God.
God Bless you.