Hello to my fellow survivors and a happy new year!
I want to share a bit of my story here, My AVM (right pariental lobe, grade 3) was detected about two month ago in hospital. Since then we are looking for specialist in this field.
I think I made a good choise by choosing the hospitals i did, but still i cant decide between two hospitals and two ways of therapy. Maybe i have to add, that I am from Germany, ad I have choosen ( for anybody coming from germany) cologne and essen.
What both hospitals have in common: Embolization ( 2-3 times) and most probably surgery.
The difference: while the first hospital only wants 2 or 3 days between the embolization steps, the other hospital wants to wait six weeks.
Of course, i would prefer the hospital doing the whole therapy as fast as possible, but am not sure, whether it is the best method.
I already talked to the doctors, but I guess I have to get some left questions answered before I fix the date of therapy.
I am wonderin if some people had the same problem with decision making? Plus, to those who had several embolisation : how much time did you wait for the second one? I wish everybody the best.
Hi Robyn. It is always frustrating when doctors disagree on treatment. The first 2 neurosurgeons I spoke with …wanted to wait 6 months before operating on me. The one I chose …wanted to do it immediately.
There is a search box located on the very top right hand side of this page. I would type in the name of the doctor or hospital in there and see if anyone else had a good experience.
Please keep us posted.
Thank you very much, barbara! You are right, it is always a difficult decision to make!! And since most of the people are no professionals, you have to only believe in what they tell you!
I already checked the box, unfortunatly I hardly found any information about the doc or the hospital. It seems to me that doctors over here in Germany dont treat AVMs as much as in the states.But still, Iwas able to find some infos in the internet about one hospital...still i am wonderin if there are like "normal" time intervals between embolizations, or: does it depend, on the AVM, the doc, the hospital ...its really freaking me out! I dont want to go with the wrong decision!
Hi. Back in September I had two embolizations five days apart then the craniotomy three days after that. It is almost four months now and so happy I made the choice to go through with the surgeries. I’ve had no complications except had a severe reaction to Keppra and the hair loss is crazy. You are exposed to a lot of radiation during the embolizations which the doctors failed to mention. But I have no regrets. I don’t have to live in fear of this anymore. Good luck to you.