Was recently diagnosed with an AVM in the frontal lobe. And have recently found out it is now causing seizures and had to stop driving. This whole thing has turned my life up side down. And facing more decisions then have ever expected to make. Don't knw which procedure to choose. The emobilization or the surgery. How do u know u r making the right decision.
tonna
Welcome Tonna,
Yep, lots of decisions to make and it’s not easy. If your team does all options (embolizations, surgery, radiation) they should be able to explain to you which is best/safest for you. There are trade offs with each.
Doesn’t hurt to get a 2nd opinion. If your DRs have treated hundreds or more, I’d put much confidence in them. A lot of your decisions will come down to how you feel about the team.
Best wishes, and let us know how things go.
Ron, KS
Hi Tonna. Learning we have an avm for the first time can be over whelming. It usualy comes as a shock to us because avms aren't that common. We take it one day at a time, thats all we can do. Siezures stink! I get them too. I assume you are now on a seizure med.?
There are many people here, who had good success with both of those procedures. I can't say much on those areas, I had gamma knife. I think it depends on the exact location and what the doctor feels is the best way. Oh, and it helps if you are confident of the surgeon doing the procedure (in my opinion). Don't be hesitant in asking the doc. questions, ask all you want. Once you learn more, then you can make that decision.
Hi Tonna,
It’s a lot to deal with, isn’t it? I think the most important thing is to make sure you’re seeing the right doctors, ones who have experience with AVMs, so you can trust their judgment. You’ll want to meet with a neurosurgeon who has AVM experience and knowledge of the different treatment options, and you’ll probably want to meet with an epileptologist for the seizures, too.
My husband had both a craniotomy and 2 embolizations, and the recovery from the embo was much faster in his case. (The craniotomy was done on an emergency basis a long time ago, and the embos recently finished the work that was started then.) His doctor believed the embo was the safest way to treat the AVM, and my husband decided that recovering quickly was important to him. We don’t know if it was the right choice, but we’re glad we went ahead with treatment. The doctor explained to us that the untreated AVM was “stealing” blood from the rest of his brain, and we noticed that he did function better after he was treated.
Also, I think people tend to try not to bother the doctor, but he/she is there to help you make the decision. You should be able to call and ask questions or make another appointment to help you decide.
You might want to search this site for discussion threads about questions to ask the doctor, making decisions, etc.
JH
found out the meds i was on for my migrans was also a seizure medication so they upped the dosage. Some times taking it one day at a time is hard I never know what is going to happen.
Ben Morrell said:
Hi Tonna. Learning we have an avm for the first time can be over whelming. It usualy comes as a shock to us because avms aren't that common. We take it one day at a time, thats all we can do. Siezures stink! I get them too. I assume you are now on a seizure med.?
There are many people here, who had good success with both of those procedures. I can't say much on those areas, I had gamma knife. I think it depends on the exact location and what the doctor feels is the best way. Oh, and it helps if you are confident of the surgeon doing the procedure (in my opinion). Don't be hesitant in asking the doc. questions, ask all you want. Once you learn more, then you can make that decision.
There is no right or wrong answer. My friend Patti Gilstrap did compose some questions which might help you...
One of the questions I would consider the most important is, how many AVM patients has he/she treated?
Outcomes of surgeries?
Does he/she anticipate any deficits? If so, will there be therapy available in the hospital?
Does he/she have other AVM patients willing to share their experience(s) - someone you can connect with?
Keep asking away - this is a GREAT website! :)
I agree with Ron...if possible get a 2nd opinion. My Insurance co. at the time allowed a 3rd opinion. And I chose the 3rd doctor!
Take notes and make certain someone else goes with you to the appt. You will be scared and they may hear something you do not because you are worried.
YOU ARE NOT ALONE!!!!!!!
It's not always easy. (Feel free to read my profile, if you'ld like). Is what I do - I don't have any expectations of my day. I have "ideas" of what I want to do. If I feel up to it, then I"ll do what I want. But, if I'm having one of my episodes - Then I don't do much of anything.
Basically, Everything I do...depends on how I feel. I'm stubborn and I use to push myself. I learned the hard way, not to do that any more. So now, I just go with the flow. It makes things a lot easier.
You really can’t know what is THE BEST decision to make, you have to trust your docs’ recommendations, trust your docs and hope and pray for the best possible outcome. Second opinions are wonderful!! Welcome to the AVM world, we will try and answer any questions you have and hopefully you won’t run away in fear!!
Hi Tonna My AVM caused a seizure also but I have been on meds for that and thank God they are under control.I agree with the rest of the replies that nobody can tell you the right way to go and a 2ND opinion never hurts.I know how hard it is to make such an important decision.I have had 2 embolizations and gamma knife raidiation and have had great results.It’s sometimes a slow process but I’m getting better every day.Ask you doctor how many of each they have done and how many were successful.Research your doctor and others in the area and get that 2nd opinion.I think all of our lives have been turned upside down but it does get better I promise.Your gonna hear the good the bad and the ugly but don’t let that discourage you everybody is different and we all respond to each surgery in a different way.I wish I could be more help to you.Good luck and keep us posted…We are all here for eachother <3 <3
Hi Tonna,
There's nothing easy about AVMs. I would agree about getting a second opinion. A way to find someone cloe is to go to the Members section and do a search for your home state or you state's abbreviation. Then you can see the doctors that other members have used and how they are doing presently. But ultimately it is your decision, and prayer doesn't hurt.
Take care,
Debbie
Questions!
I am seeing my neurosurgeon at the Gamma Knife centre in London on 15th February and a list of questions would be very helpful, did your friend post her list on here, if so could you direct me to it please?
Barbara H. said:
There is no right or wrong answer. My friend Patti Gilstrap did compose some questions which might help you...
One of the questions I would consider the most important is, how many AVM patients has he/she treated?
Outcomes of surgeries?
Does he/she anticipate any deficits? If so, will there be therapy available in the hospital?
Does he/she have other AVM patients willing to share their experience(s) - someone you can connect with?
Keep asking away - this is a GREAT website! :)
I agree with Ron...if possible get a 2nd opinion. My Insurance co. at the time allowed a 3rd opinion. And I chose the 3rd doctor!
Take notes and make certain someone else goes with you to the appt. You will be scared and they may hear something you do not because you are worried.
YOU ARE NOT ALONE!!!!!!!
Tonna, one of my "migraine" meds is also a seizure med too.