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AVM Survivors Network

Another surgery.. Crani?

#1

Hello all,

So I have debilitating headaches for as long as I can remember. I was diagnosed with a left Temporal avm in 2006 (headaches started in 2005). I started treatments in 2007. Which was mulitple emblozations, mulitple gammas knives.

Now I do mulitple things to try and keep my headaches under control. Such as nerve blocks, trigger points, Botox, medicine. Nothing truly works to where I can do things and not get a terrible headache.

So my neuro is thinking that I need a craniotomy to get rid of the 2 fistulas that were caused by the treatments of the avm. He has treated those as well, but I’d love to be headache free or at least for them to be lessoned!

Has anyone been in this boat or similar? I’m nervous but happy if the surgery is possible… Thanks.

#2

Its ben a bit since we heard from you and I wish your post was a little better news. I can’t speak from experience as I was bleed, gamma, 27 months or so and news of obliteration. I hate to go to the standard that if you trust your doctor, and I think anyone considering a craniotomy has trust, that weighs heavily in the decision. My AVM was left temporal as well but i the inner side, that was the deciding factor to go gamma vs. craniotomy, far less risk.

I don’t recall anyone having a similar position as yours, but hope someone can add some experience. Take Care and know we are with you whatever you choose! John.

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#3

Hi John,
My avm was deep in the left temporal lope. A craniotomy was not an option as I was consider inoperable. So I was so thankful for gamma knife and embolizations.

Now that the fistulas are on the outer side it should be easier to get to. But you are right trusting the doctor and such is very important!! Thanks for your kind words. Andrea

#4

@Andrea_Fisher I too have terrible head pain and have had all the same shots, I have a DAVF left side transverse sigmoid vein area.
My pain actually started prior to the DAVF
I have a massive rare stroke called CVST, but anyway the result is centralized pain syndrome.
That is my diagnosis.
I just had a 5 day inpatient Ketamine IV infusion at Stanford and got a few days of total pain relief!
Now Stanford is pretty conservative on their dosage. The highest dose was 30 mg.
They did inpatient cause I am allergic to many meds and no allergy would test my prior.
My understanding is you need 6-8 treatments to “reset” your pain.
My insurance is fighting it right now with Stanford, but in the Meantime I am on oral Ketamine, which you have to get from a compounding pharmacy which the cheapest compounding pharmacy is Belmar pharmacy in Colorado.
My dose is 20 mg.

Angela