About 5 years ago my AVM was first discovered after it ruptured and it was found that it was a very large AVM that was very deep in the brain so surgery is too risky and not seen as an option.
Now just last month i had another bleed and the doctors put it down to an aneurysm.
Im now just monitoring the AVM and on blood pressure medication.
It is very scary living with an AVM for me. Can anyone help with any non surgical treatments to help prevent further bleeds or has anyone been living with an untreatable AVM in the brain and can help me what i can do because im terrified?
Hey Angeeee, really sorry you are dealing with this. I think there are two routes you can take. First, remember that the odds of a bleed in a given year are really low and find some peace there. Also, and do what you can to lower the odds of problems even more. For example, avoid taking medicine that will thin your blood, for example don’t take ibuprofen (Advil etc.) or aspirin, omega acid supplements, or any prescription drug that has this effect. If there is a bleed, blood thinners = worse consequences.
Other things to improve your odds are keeping your intracranial blood pressure low. So things like playing a trumpet are a bad idea (this is a random but illustrative example), as is exerting too much strain doing anything. Keeping your blood pressure down & managing anxiety may also be a good idea - beta blockers (e.g., propranolol) both lower blood pressure and prevent cardiovascular reactivity to stress (not sure what med you are on for BP). This reduces the cumulative wear and tear on the AVM vessels. Managing anxiety/depression with for example zoloft may also be a good idea if that is an issue for you.
The second angle I would take is considering a second opinion on the treatability of your AVM. Doing a craniotomy & resection is out, but what about volume stage radiosurgery (gamma or cyber knife)? Some docs have had good success treating real large inoperable AVMs. I would send your MRIs to Dr. Lunsford at Pittsburgh. He’s been treating large AVMs in eloquent regions for years, and has lots of data on outcomes etc. I would get his opinion for sure.
Best wishes. AVMs suck. Keep your head up, do what you can medically, then focus on doing stuff you enjoy. The future will be what it will be - try not to let fear get in the way of living in the present.
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Hello Angee! First, I am so sorry to hear of this. As a survivor of 3 brain bleeds, I can imagine how difficult this ordeal is. I would strongly recommend getting a second opinion. Although another bleed is generally not expected, I did experience a bleed after the initial surgery to treat another avm in my brain. This may not be the case for you. However, having done some of the research, and experienced 3 bleeds, two in 2000 and 1 in 2010, I strongly recommend getting these things treated.
I offer this study link but definitively suggest talking to your neurosurgeon/neurologist:
http://www.neurologyadvisor.com/migraine-and-headache/headache-associated-arteriovenous-malformations-treatment-strategies/article/654850/?webSyncID=7a259cb1-3a11-e9bb-269b-4078c4c52513&sessionGUID=279290c2-321a-2d5e-4d25-a51ab4ec781a
Blessings as you live on and stay strong as you continue!
My AVM was deep in my brain, so radiation was my only option. However, mine was a small AVM. Where do you live?
Hi Angee
I’ve heard that the Sheffield Centre for Stereotactic Radiosurgery in the U.K. has done more Gamma Knife AVMs than anywhere and may be / potentially a place to go if you want to explore more opinions and options. On their website they’ve done over 6500 and perhaps they can find a solution. I hope this helps.
Best regards.
Angeeee
I’m definitely with DB20 on reducing your risk, etc. All of DB’s advice is good. I would second the “second opinion” idea, especially as time has moved on a fair bit meanwhile. I’m not sure it would lead to a different outcome but maybe one day, asking the question will. So don’t give up.
I know there are others who have been given a “no can do” outcome, so again you’re not alone. I think @Mandaayr is with you on that and @Lulu1 hasn’t ventured to have an operation because of the risks with her AVM. Definitely not alone.
For myself, I was a bit more comfortable once I got myself a medical bracelet and told a number of the people I live and work with that if they ever found me not making sense or inappropriately sprawling on the floor to know about my condition and dial Emergency. So maybe something like that can help you relax a bit and be a positive step towards getting the right help if you need it. Mine has my health service identity on, my condition, advice for passers by (= dial Emergency) and my wife’s phone no.
Stay cool. You’re worth it!
Richard
Hi Angeeee, so sorry to hear your news, I was in a similar situation 11 years ago, after a bleed, I was told my AVM was to close to brain stem to operate but could bleed again, i was given the option of Sheffield Centre for Stereotactic Radiosurgery in the U.K. Gamma Knife , which had quiet a long waiting list (18 months) so know what its like living with the possibility of another bleed, I was told not to lift anything heavy, not to get stressed and not to get pregnant ( not a problem as I was 46) . after the Gamma knife it took approx 18 months for the AVM to disappear and I was lucky to get rid of it although there was some damage done to my optic nerve which I was warned could happen, but I still think for me it was the best option. If you have any questions or need to talk , feel free. Good luck stay positive and really try not to stress xx
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Hello,
When you had a bleed how did they treat? We’re you left with any deficits?