Am new to group but hope to get your help.
Am 53 years old and was just diagnosed with an AVM. Have a meeting on Monday with surgeon to discuss options. I think I have most of the basic questions answered but wanted see if there are any questions that you wish you would have asked? Or are there questions that I might not know enough to ask?
Thank you and happy thanksgiving
Hi Stewie,
First off, let me offer my condolences for the passing of your mother. With the holiday approaching, I'm sure this is a difficult time for you and your family. I pray that you and your family get through this holiday with ease the best that you can.
To answer your question. One of the most important things to know is: What's the risk of it bleeding? And what's the risks of the options for treatment that they will be giving you? You will find out on Monday if it's operable or not. If it's not operable, then I'm certain they will offer you some type of radiation. If so, ask them how long it will take for the radiation to obliviate it. Make sure you ask them about possible side effects and what to expect after the surgery or radiation treatment. -- Which ever they offer you. Find out what the size of it is and the exact location of it. The location has a lot to do with what the risks are in having it and in treating it.
Ben
The dr is going to be giving you a lot of information to think about.. I suggest you write it down so you can look it over later. Do your best to try not to be overwhelmed by all of this. It's always a shock when we first find out we have one.
I'm 51 and I have two small ones (1/2" each) left after having Gamma Knife radiation in 2007. I knew about mine since 1991 when it measured 3 cm. In 2007 I found out it grew to 5 cm. That's when I decided to have it treated.
I don't know how bad your headaches are but, if you get migraines. I think you should ask your dr for some pain meds. With your avm, you need to be careful as to NOT take anything that will thin your blood -- such as aspirin and ibuprofen. That can be very dangerous for us.
With your face going/feeling numb. Sometimes a seizure med will help with that. I was on tegretol for a couple of years. Along with keeping my seizures under control, it also helped me with the numbness and cervical dystonia that I got. It's just a thought (smiles).
Please feel free to ask me anything you want. I will do my best to help you through this. I sent you a "friend request" so you can contact me personally. Or .. you can just post another question or a blog, and I'm certain others will help you too. There are a LOT of good people here (smiles).
Ben
Thank you for your great advice.! Much appreciated.
Ben did a fantastic job providing you with the questions you could ask the Team. At the time my AVM was diagnosed, I didn't know about this wonderful supportive Group.
If you are bringing someone with you..ask them to write down everything as well....When I had that meeting, I was so overwelmed that I had to ask my daughter what she understood.
Stay Strong & Positive!
Thanks Louisa
This is a pretty good list…http://www.avmsurvivors.org/group/questionsformydoctor/forum/topics/good-resource-list-of-questions-for-your-neurosurgeon
Thank you Barbara.