Scheduled for an embolization on 9/2/08..........need thoughts/advice

After months of waiting…finally scheduled for embolization on 9/2/08. I was told by the Dr’s Assistant that the Dr. would tell me his recommendation for the next step after this procedure. Is this the “normal” way Drs handle this? Background - my AVM was discovered during CAT scan because of migraines. I never had a bleed.

Hi, Gail-
I know that September 2 isn’t far away, but have you considered a 2nd opinion?Not sure where you are in PA, but you probably have several options in Philly, Pittsburgh or the NYC area. Also- this is a very serious procedure, I would expect to get this information directly from the doctor instead of her assistant. Your AVM seems relatively small, is Gamma Knife an option?

I guess if an embo is the way to go, then, yes, you’ll hear about next steps after the treatment. They’ll have a better sense of how well the embo went, recovery time and follow-up procedures.

Hi Gail

Did you have an appointment prior to them scheduling the embo? Did they ever talk to you about your options? As Brian said it is close to Sept 2nd but if you do not feel comfortable it does not hurt to get a second opinion.

Hi Gail, I just completed my first embolization 6 weeks ago and the next is scheduled in just 2 weeks. I agree with the other comments about additional opinions. My surgeon at Johns Hopkins outlined my treatment plan before any work was started, and that is what I expected. I interviewed several Surgeons at 4 different medical centers before I decided.
It is not unusual for them to determine the next step after the embolization since they don’t know how much they might be able to do. I was told I would have 3 or 4 and then Gamma knife but they would see how each of the embolizations went.
Hope this helps,
Good Luck

Hello Gail, my daughter, Ashley’s AVM was found after a fall on the ice and a CT scan to check for any cracked skull…well,needless to say, skull was fine, but they found a avm. She went in for an embolization in March but after several attempts at it they decided it was too close to her neuro center to proceed safely, so they didn’t embolize at all. She had cyberknife radiation(4fractions)and is doing well. None of the dr.'s seem to give us much info…kinda feels like they aren’t too sure of what is going on at times…but we have had some success so far, they never really know until they get in there! Best of luck to you…take care. Denise

I think you should know the whole plan before it is even started even if there are possible different outcomes from the embolization, which there will be.
I’m sure you are feeling so scared and unsure and that must be so difficult. I would ask for another appt to help you with this and get more answers.

Also regarding how long this is all taking, my son’s AVM was diagnosed on Dec.30/07, he had an angiogram on Feb. 11 and he did not have treatment until July 2/08 so I think everyone’s timeline is different. We live in Canada. Biggest thing I learned along the way, don’t wait for them to call you, get on that phone and make some noise.
My thoughts are with you.

Hi Gail,

Have you had a chance to ask the doctor if ther will be a next step and if what is it? Also ask him what they expect the out come to be. Will they be using glue or coils? If they are going to do a next step what would be the deciding factor. More important what are the side effects. And will be on medications? I am thinking about embolizations but I have so many questions. If you could help answer some of this questions it would be great.
Hope all is well.