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AVM Survivors Network

4cm AVM Success Rate

Hello All,

From reading my profile, you will see that I have about a 4cm size AVM on the right side of my brain. According to my doctor, this is more on the larger side. I was wondering if anyone else on here also has a 4cm or larger AVM and if they were able to successfully close the AVM off with any type of radiation or embolization? Surgery is not an option for me due to deep drainage. Just trying to get a feel of the success rate with this size AVM. Thank you!

Here is a grading system that is used, Sorry I don't know how to make it a nice easy link!

http://radiopaedia.org/articles/spetzler-martin-arteriovenous-malformation-grading-system

Take Care,

John

I'm new here, so I know there are far more in depth positions than I can offer. Also, I've only been dealing with this for about six months, so I cannot talk long term success. From what I've researched/experienced so far, large grade AVMs are complex (mine is a 5, approx. 7.3cm). Because it interacts with other key brain functions there are serious risks that any treatment may compromise a important function. I think you should get as much info about the area your AVM is in and what role does it serve. My AVM is located in my motor area, and my 2nd embo caused serious weakness on the left side of my body. Hindsight is 20/20, so I'll just emphasize the importance of information and multiple professional opinions. Good Luck!

Thank you! This is very useful!

Thank you for your experience and information! I will get as many opinions as I can, I wish you the best of luck!

Hi amcoffey,

I can share my recent experience that may help you think this through. I had one removed from my right parietal lobe around this time last year (attached MRI image). It was also fairly large, but the concern was more about the location than size. In my case, it was positioned directly over my sensory strip (adjacent to the motor strip).

I went through about 4 different opinions from well-respected neurosurgeons. Half of them did not recommend surgery, due to the area it was located. Hence, these folks recommended gamma-knife (or cyber-knife) since it was mostly symmetrical and easy to target with radiation. The ones that recommended surgery, felt gamma-knife actually makes it more difficult to recover from a surgery if the gamma-knife had failed to eliminate it. According to them, the radiation kind of "ages the brain tissue" and makes it harder to recover from deficits that could result from a surgery.

Embolization was never advised to be used alone in my case due its size. The approach to embolization differed depending whether gamma-knife or surgery was the elected approach.

I ended up choosing surgery, mainly because I wanted to get it over with. They did embolization 1 week prior the surgery, and then an additional embolization the day prior to the surgery to finish turning it into a "rubber ball." The 2nd embolization did cause sensory deficits in my left side, but these were risks that I understood going into the process. The surgery that followed was supposed to take 6 hours, but ended up taking ~12 hours (they went back in after discovering a smaller 2nd AVM beneath the larger one). It took about 2 weeks of intensive rehab and 6 months to feel completely normal again (minus mild sensory deficits on the left side). Overall, I do not have a single regret.

My advice for you is to get several more opinions if you haven't already done so. In my experience, the first two surgeons I met had completely divergent opinions. Time is on your side. In other good news, I was often reassured that larger AVMs are less likely to bleed. I am confident you'll find great care and make it through this!

2-MRI_AX_SE_T11.png (331 KB)

Wow, HalfFull I am glad to hear you have had a great recovery. You really have made me change my mind and seek additional opinions. I was also told that larger AVM's are less likely to bleed, sometimes I forget that and it's hard to not focus on the negative and I find myself constantly worrying about "what if it bleeds one day and ruins my life forever?" This coming Monday I will find another specialist in the area and see what he/she has to say.

Glad to hear that everything is okay after all you've been through. It sure can be a tough road. Thank you so much. Best of luck.

Great! I hope you find it encouraging. Do consider traveling for second opinions. My wife and I turned each appointment into a little mini-vacation.

I ultimately ended up going with Dr. Robert Solomon (Surgeon) and Dr. Philip Meyers (Interventional Radiologist) at New York Presbyterian Colombia. Dr. Solomon only works on AVMs and Aneurysms. He also pointed out things on the MRI that no other surgeon had mentioned to us. Furthermore, Colombia used a very safe technique with their embolization, where they would run a simulation prior to injecting the glue. They would first inject a numbing medication that would last about 5 seconds; this gave you a chance to know if a deficit might occur (in my case some numbness on the left side).

Ultimately, it comes down to what team of physicians make you feel the most comfortable. At some point, you have let go and put your trust in them to make the best decisions on your behalf.

Interesting, maybe I will take a trip up there to get an opinion. You're absolutely right, just have to let go eventually.

Hi, sugery was not an option for me. My AVM was 5cm and was obliterated with 2 separate (5yrs apart) treatments of Cyberknife radiation. The first treatment only reduced size by 1/3 so another treatment was performed and the AVM was gone at the next 6 month checkup

Hi amcoffey
My avm was originally 5 cm a little bigger deep in my left temporal lobe. My journey started with my diagnosis on December 13th 2006. First treatment of an embolization in March of 2007. Since than I have had in total 4 embolizations and 3 gamma knives. My avm is not yet gone. I’m still fighting to get rid of this bugger. I now suffer from all types of seizures horrid daily headaches and I’m still unable to work or have a 2nd child. I believe you stated your avm was considered inoperable so was mine. I have now just been looking at the good parts, I’m alive have only had slight set backs. But there are definitely days I have rants and why me but that is normal. Feel free to ask me anything I actually find out in august if I need a 4th round of gamma knife. It’s been almost a decade of my life. My son was just about to be 3 and I was a month away from my 24th birthday when we found it. Now I just dream of coming of getting this gone getting of all my meds long enough to have a baby and continue on with my life. Please feel free to ask anything and everything. Hugs prayers and you will do great!

Andrea

Congratulations I’m jealous so glad you got rid of your avm quickly! Rid my story below.

P.s my was a 5 on the scale.

I agree…it’s very useful to ask as many questions as you can think of. Even though mine is only a little bigger than 2cm, it has deep drainage and is very close to my vision center. It has also ruptured once. Although it would typically be a grade 3, it is a grade 4 because of the bleed. At first he didn’t think he could get to it to embolize it so we were going to do gamma knife radiation. After looking more closely He was convinced if he got enough pictures he could find a safe way. 6000 pictures later from a very long MRI, he found a way and hopefully we will not be looking at radiation. Don’t be afraid to ask ask ask

My AVM is also 4 cm on the right of my cerebellum. One doctor classified it as "small ... the size of a small grape". I have read that 3 cm is considered small. So, on the large, medium & small scale, I'm saying its "small". My AVM ruptured in Nov., 2014. Because it is close to my neck muscles, surgery was not an option. As such, I opted for the Gamma Knife Radiation procedure which I had in April 2015. My 18 month checkup will happen in Oct., 2016 and I am beyond anxious to see if this AVM is smaller or preferably gone. I pray it is. I had hardly any side effects from the Gamma Knife procedure: my scalp was numb for about 3 days; my forehead was sore where they drilled the halo into my forehead and the nape of my neck; and I had moderate headaches for about 3 days afterwards. The oddest thing was that the day after the procedure, I had a sudden surge of energy and clarity of mind, that I had not had in months! I can't tell you yet how successful the G.K. procedure was, but I wish you the best of luck for a successful procedure. I have found only two things that keep me positive and keep me moving forward day-to-day. Prayer & Patience (P&P). Some days I'm short on both, but I quickly get back to my P&P mode.

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Thank you for sharing I really appreciate it! Interesting that they can go in more than once with cyber knife

Thank you for sharing your story! I hope that they can get rid of the AVM once and for all, some stories I read they are really stubborn to go away. Keep your chin up and live a normal life as much as you can, trust me I know it can be hard some days.

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Interesting, I have been considering getting a second opinion to get more of my questions answered. Thank you for your information!

Good luck at your next MRI checkup, I hope they find that the AVM is gone! Thanks for sharing your story, reading all of the information on here has been helping me get through everything and ask more questions to my doctor

After my last response he found a deeper 2nd Avm. The 2nd was embolized last Friday despite the neurosurgeon telling me not to expect him to be able to do much because he likely wouldn’t be able to reach it. Well, he did, and he did awesome. No radiation necessary, and my mind has not been this clear since my first seizure/car accident . Never give up hope. I still take it slow as I won’t see him again until 9-13. I can’t wait to see the pictures and I’ll post them if I can and its allowed. They found out that the 2nd one had a slow slow leak/ bleed which was slowing a lot of my cognitive processes and making me super tired. At least that’s how I understood it. I knew it was far more successful when I woke up just because of how much more clarity I had. Stay positive, I will keep you in my prayers☀️

Lorna