Update

Hi everyone,

I had a consult this morning with one of the neurosurgeons at the group I go to. This Doctor specializes in radiosurgery. He is upgrading his equipment, should have it by end of Feb or early March so I am going to wait until he gets the new equipment installed. The company is Brainlab, the product is Novalis…see link… http://www.brainlab.com/scripts/website_english.asp?articleID=2578&articleTypeID=284&pageTypeID=4
I will not need a halo as he will do fractioned off smaller doses, so I will have a soft mask. This equipment is very precise, I feel confident about this type of radiation and I really like the team of Doctors at St Thomas. I wasn’t getting that warm and fuzzy feeling at Vanderbilt even though I know Vanderbilt is a very reputable hospital I prefer to stay with the group of Doctors that are all colleagues. I had been referred out to Vanderbilt because of the wait for Dr. Abram’s equipment. I had my consult at Vandy and just wasn’t comfortable. Surgery is not really an option, my Doctors feel that it is too risky due to the location of my avm. I am confident that between the two embo’s and the radiation that I will be one of the 80% that has their avm obliterated. I have to be positive. I know I still have a chance of a bleed but I’m going to try and not focus on that. I have to have faith.
Thanks for listening.

Rachel

Sounds great, Rachel. It is very important to feel comfortable with your physician.

Sounds like a good idea. Why rush if you don’t have to, right?

That sound like Cyberknife; which is a less dose than Gama but more precise ???

Keep the faith Rachel and go with wot you know. I’ll keep you inmy thoughts and prayers.

Sounds like you are going with your gut feeling- which is always a good thing. You have to make a decision either way and I know it’s SO hard to do. Your AVM does look deep so it makes total sense what you have been told. The third opinion we got for our son told us that because he had not had a bleed, we needed to try the Gamma Knife radiation first because they knew he would have deficits from surgery but he may come thru Gamma totally fine. (please God)

So we are also taking that chance that he could have a bleed over the next 3 years, which at times is very difficult BUT we have to go forward with our decision in a positive way and face whatever happens. The positives are that you KNOW you have the AVM now so if you do have a bleed, they can act fast and deal with it without having to figure out what is wrong. (at least this is what i think and it helps me not go completely crazy)
So, Rachel, now I’m going to be your mother- do you have a medic alert bracelet? Do you have copies of all of your xrays, etc. so have with you if you travel somewhere? Do you let people around you know about your condition and what to do if you have signs of a bleed? DO you always carry your cell phone? Just make yourself as safe as possible and you will feel a tiny tiny bit better and then just keep taking it one day at a time and be thankful, always thankful which I’m sure you are. take care.