AVM Survivors Network

AVM surgery or not?

Hi to All,

I was diagnosed with a small AVM on the left cerebellum when I had a bleed from an aneurysm that was close to the AVM. They coiled the aneurysm while I was in the hospital and sent me home to recover. I have recovered and the doctor has given me 3 choices of what I can do with the AVM. (nothing, gamma knife, or surgery) They do not "think" it was the AVM that bled.....they believe it was the aneurysm, but not 100% positive. They do not recommend doing nothing. However, it is very hard to even think about going through such a intense surgery that might leave me with problems when I am feeling great right now. **I really do NOT want to do the gamma knife. Radiation really scares me. So, here is what I want to know.

**How horrible is the recovery of surgery....and the chances of a bleed?
**Would it be a really bad choice to do nothing?
**It will probably NOT be embolized (sp?) before surgery since it is very difficult to get to from an arteriogram.......and is that a good thing?
***My AVM is considered to be very small.

I am pretty much petrified since I was 2 weeks in the hospital from the bleed, and quite close to death during the whole ordeal.
thank you for any input you can give!!

Four_r, I can’t think of a better opportunity to get a second opinion from a doctor that’s had extensive experience with AVMs. You can read a recent post for more info: http://www.avmsurvivors.org/forum/topics/2nd-opinion-program

There’s not many decisions you’ll face in your life that are more important than this one. The more information you’ll have the more confident you’ll be. I wish you all the best!

Hi Four_r, I agree with Tim, You seem to be in a fortunate position that you have choices. Take care and try get as much info as you can.

Thank you for the information. I am going to try and get the information so I can send it in for a 2nd opinion. I keep reading about more people on here that have done the GK instead of invasive surgery. I am really petrified of radiation. Invasive surgery also scares me. Therefore, I am quite interested in a second opinion.

This is never easy when answering as every one is different as far as recovery, side effects etc are concerned...I dont have the answer but only you and your family can help make the right decision.

I would say that doing nothing wouldnt be an option for me and if the surgery was an easy procedure then maybe having it removed in full in one go could be the option to look at...in my case I had no option after the bleed and had to have surgery and 4yrs later im still getting through things better a day at a time...life is precious and you need to do what is right for you in your life...maybe a second opinion may help your decision also...God bless and keep us posted!

four_r... It really is hard to have that many chooses for our AVM's. It would be a good idea to get a second opinion.

However, please know that having a small AVM is just as serious as any size AVM and that the size should not effect your decision.

You will be in our thoughts so please keep us informed.

Stay Strong & Positive!

Fou_r I will just echo what a few others have said. Get a second, even a third opinion. The most important thing is seeking a doctor with knowledge and experience treating AVMs. Once you've been fully informed and educated you may have an easier time making a decision. It's definitely not easy. Good luck.

Hi four_r.
From my understanding, my neurosurgeon told me that the size of an AVM is neither here nor there. The fact that the AVM is present, it means that there is a likelihood of it rupturing. And that’s about 2-4% every year. So whether the avm is big or small, that chance still remains the same. Similarly, you want your treatment option to get rid of the whole AVM, not just part of it. Because if only part of the avm is removed, then the chance of the other part rupturing is still the same.

I don’t mean to scare you. I am in a similar position to you. Having to weigh the pros and cons of surgery etc.

Like the others said, I would definitely advise you to look at getting a second opinion. Good luck and keep us posted!

I chose surgery. It worked out great. It was the fastest way to solve the problem, and the doctor recommended it. A friend is doing GK. Every 6 months she needs to be re-evaluated, the tumor measured, and undergo another round of treatment. What a chore. Who wants to stress about this for years? Just get it done with one fellow swoop.

Thank all of you for your comments!!!
I am trying to get a second opinion, but haven't heard back yet. I have actually scheduled surgery for April 20th. It is a craniotomy without an embolization before. The doc said it would take from 3-6 hours. I really would like to know from some of you that have had surgery what to expect after the surgery. (the things the doctors forget to tell you). I am trying to take all of this in.....the fact that they are actually going to be working in my brain.!! (upper part of my cerebellum) I'm not sure what questions I should be asking the doctor. He said it is usually 1-2 days in ICU and a 3-5 day hospital stay. This just sounds really dangerous and I am feeling fine right now. It just sounds crazy to me that I am letting them cut my head open when this AVM has probably never bled...and I am feeling great right now!!...The doctors keep telling me that doing "nothing" is the worse thing to choose.. They had coiled my aneurysm 2 months ago....and had also found this AVM. It was NOT a good experience because I got extremely sick during this whole process. They believe it was the aneurysm that had bled, but it was very close to this AVM. I just need to hear from some people who have had experience with this surgery!! Thank you soooooooo much!!!

Dear four_r

In your other post you mention wanting to be around for your grand-daughter and do not want to "be disabled". I also had a diagnosis of an ABM (the size of a grapefruit) with complications of aneurysms. The aneurysms bled - twice - and finally I was ready for treatment to shrink the AVM so it could be surgically removed. The method of choice was the good old fashioned Proton Beam. I received the treatment in 1973 and after two years was granted surgery to remove the remaining mass, now walnut-sized,in the fall of 1975. I am doing incredibly well. I have a little left sided weakness, but nothing insurmountable. The braid is an amazing organ and manages to re-wire and heal itself.

When weighing whether you want to live with your AVM or not, I would weigh what life will be like with it there. Might it grow? If so, will you have a of seizures? If it grows, what is the likely reaction of the area of your brain that will be affected? I am not a doctor so cannot speak to the effects of a mass exerting pressure on the left temporal lobe. These are questions worth asking.

I am telling you my story because neurology and neuro surgery have come such a long way. Without knowing where you live, I will fathom you are in good hands. It takes special people to enter this field. Trust the opinion of your loved ones and how you feel inside.

I wish you the best and look forward to reading your next post.

With the utmost sincerity, Maria

Thank you Maria. I appreciate you telling me your story. These surgeons are great here at Mercy Hospital in Oklahoma. They had to coil my aneurysm that bled 2 months ago and it was a very tricky surgery (catheter), and I came through it with no problems. I trust these doctors and know they study this stuff. I was blessed in many ways, but being air-lifted to this hospital was a true blessing. It is just a little scary to go in to a craniotomy when I am feeling great.......(but I still know I have this AVM in my cerebellum).
Thank you again!!!!