Senator Tim Johnson

[LIZARD]

Senator Tim Johnson, of South Dakota, had a hemorrhage from an AVM and had surgery today. He was initally believed to have had a stroke or heart attack.

I'm curious, as a patient with hydrocephalus who has never had this, but because I know of some who have...how are the symptoms similar or different than stroke, and what exactly is the difference between the AVM hemorrhage and a stroke?

Thanks for any info,

LIZARD :)

[susanlynne48]

An AVM is a situation that can occur anywhere in the body, the lungs, circulatory system, abdomen, etc. It is usually congenital. To simplify it, an artery usually delivers the blood via the circulatory system up thru the body into the brain, where it is spilled into a bed of capillaries where it is re-oxygenated and then it is sent back thru a vein to circulate once again. In an AVM, there is no intervening bed of capillaries to slow down the blood and reoxygenate it. Consequently, the blood flow is very fast and over time that can weaken the walls of the artery and/or vein. Sometimes there is more than one artery and vein involved, the ascending artery and the descending vein. Some AVMs can be quite large in that instance. I had a small one, but actually the small ones are more in danger of rupturing than the larger ones. But, the larger ones can do other messy things in the brain as well.

Mine was about 2 cm. and only involved one artery (ascending), and one vein (descending). It was found totally by accident; I had never had any symptoms of its existence. It may have continued to do nothing, but I chose to have it embolized.

The symptoms may be very similar, but there are some that are unique to AVMs like bruit (the sound of blood rushing thru the artery and vein that can be heard). They can also cause severe headaches, seizures, and other neurological problems. These can be initial signs of the AVM bleeding (a slow bleed, kind of like a tire that slowly leaks air, but may be in danger of blowing). A severe rupture like the Senator had, is the ultimate result of a bad bleed. They cause stroke-like symptoms. He probably had a blinding headache (the "worst headache of your life" type) and passed out.

At this point, his AVM required surgical repair due to the bleeding, they had to access it quickly and repair the AVM. He is probably in an induced coma so that the swelling in the brain can be handled with steroids and to reduce further trauma.

He will probably suffer residual effects that may be remedied through therapeutic techniques, such as atasia (speech problems), and other neurological symptoms. Most often if one survives the surgery and recovers, these problems can be dealt with and he will be okay. Following my embolization, the doctor thought I had a "mini-stroke", because I had problems swallowing, talking, chewing, etc. I also developed severe migraines. This is from disturbing the nerves surrounding the AVM, too. My doc put me on anti-seizure meds, not because I was having seizures, but because seizure meds work to calm the nerves in various centers of the brain. Those helped a great deal. I had my AVM embolized in October of 2003. This year I finally got over the migraines, but they were vicious.

My mistake (altho I didn't know it at the time) was not having a neurologist on board prior to having the embolization done. I made lots of trips to the ER, thinking that I had a bleed, etc., because of the severe headaches.

As far as I know, it is doing fine now, but I still go for yearly checkups with my neurologist.

I hope this helps. There is a lot of info on the web about AVMs prior to and including repair, whether by surgery, embolization, or gamma knife. There's just not a lot about post-procedural symptoms.

Susan

[Cry Tears]

My intestinal AVM looked like a ball of worms.
Veins and small arteries growing into eachother...made it a baseball sized mass caused no problems for 50 years...then one day it blew and the "fun" began. At the time all that could be done was transfuse me whenever my hemaglobin got too low.
It was found during a surgery for my Crohns disease.
Once they removed the section of intestine that "held" my AVM, I was "fine".
All my anemia problems are over and that "nightmare" was over.
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