It’s really bugging me that my AVM can not be removed because I have the risk of going deaf or mute with the surgery. I’m just wondering if there’s any one else who has an AVM that can not be removed and how you are coping with it
Hi Owen. You may wish to join this sub-group…http://www.avmsurvivors.org/group/inoperableavms
This is a friend of mine…http://www.avmsurvivors.org/profile/GregKovach
He had to wait 22 years before medicine advanced enough to do anything about his AVM.
You will be on my prayer list!
Is gamma knife an option? My avm was also inoperable because they said surgery could paralyze me (it is deep in my brain). But gamma knife was an option.
My AVM is located in the left temporal lobe. I am told mine is inoperable as well. I had 3 embolazations done and one stereotactic radio surgery. Just recently I started having TIA's, one just last night. I can't stand it. :(
Where is yur AVM located
My son has a facial /brain AVM with lots of medical complications (trach since birth left hemiparesis ect)mostly because of medical treatment and embolizations at birth .I have no big issues with all of this because he in now 34 and with medical advancements many of these things would not have happened. Surgery not possible due to risk of bleeding/death due excessive blood loss. He deals with it day by day, and really is very productive in his own right
Hello those of you with Inoperable AVM's...While my AVM is gone, I am trying to get information for all of you what new treatments are in the horizon for those with Inoperable AVM's. If I get any answers, I will send it on to you.
You are always in my thoughts and prayers.
Louisa
Mine was inoperable via traditional means, but I did have Gamma Knife surgery. It is my understanding that prior to a bleed the decision whether to perform the surgery or not is a difficult one because they have to balance the possible complications of any surgery (radiosurgery has its own potential complications) with the risk for a bleed. In my case, the decision was simple because I had already had a bleed and after a bleed the risk increases substantially.
I can relate. I have a deep Left temporal lobe AVM. The main feeder to the AVM also supplies blood to my vision. They cannot completely remove it.If they do remove it I would lose half of my vision in both eyes. I have had several embolizations to shrink this. I also had 2 rounds of Gamma knife. It has shrunk and they now consider it,"managed". I will from here on out get a cerebral angiogram yearly to make sure it does not change. The side effects that I have had from my bleed are temporal lobe seizure disorder, a few blind spots that have cleared,slight hearing difficulty (every time I swallow it sounds like I have water in my ears". Considering the stroke and several surgeries I'm happy and love to exercise and work full time =) I will admit I get jealous of a support group that I go to with all sweet ladies who had brain AVM's. Majority of them had them removed and one is in the process. Happy for them but sometimes it sucks and wish mine would just vanish by some miracle. Just blessed to be alive and functioning !! Praying for healing and peace of mind for you and your family.
Hi there. Mine is inoperable. Doesn’t matter why - I think you are more concerned with how I/we deal with it everyday. It has been about 15 years since they told me about mine and at first I was scared to death. I am still scared but I had to turn it all over to God or I was going to go insane, and everyday I get up and do it all over again. That’s how I have made it this long. We each have our own, unique story and in time you will be sharing yours with a newcomer to this forum. Beverly
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I had gamma knife surgery,the only problem they put too much gamma,and it left me with a tremor,anyone have a cure ?
Hi there.
My cerebellar AVM cannot be removed by either. I can have Gamma Knife. But the hospital that do this in the UK won't touch me unless I have at least 3 embolisations first to decrease the size of the AVM. Even then the procedure would be risky. And after much soul-searching I decided not to go ahead with the procedure. Sometimes I feel like a coward. But then I remind myself that sometimes doing nothing is the best strategy and that the last thing I want is to make things worse for myself. It can be pretty depressing to think you're stuck with this condition. But I am just hoping for medical advances in years to come. I also suffer from Hydrocephalus and every time my Shunt needs replacing I marvel at how much better the procedure is and how much more the medical staff know about neurological problems.
Hi. You have probably researched this but there are only two hospitals that have special operating rooms to see an angiogram and do the operation at the same time. Don’t know what one is but the other is UVA in Charlottesville, Va. My daughter had an inoperable AVM and Dr Liu was able to remove it completely due to this new technology. Might be worth checking it out.
HI Owen :):) I've read the replies here and this last one seems really promising. I have a right frontal/parietal AVM. Inoperable due to the location and the risk of paralysis/brain damage/death are too high. I had Gamma knife surgery in 2011 and it's working well, perhaps another year and I'll be risk free of a bleed. I've been very lucky as the side effects of radiation have been minimal aside from scaring on my brain which has only increased the damage slightly more than the AVM has already done. Without the gamma knife however the doctors are confident that by now it would have ruptured and at best I'd be paralysed on my left side with little right frontal function left. The pros far outweighed the cons in my case but you know what's best for you so don't be afraid to fight your corner. Ask for second opinions, many doctors have many differing views and the fight is only over when we give up!! Best of luck to you and I hope you find the solution that really works :):):)
I understand the frustrations and fear that comes with having an inoperable AVM. I was first told it was inoperable, then told gamma knife wasn’t an option then told surgery was my only option. I had surgery but it only removed part of avm due to proximity of my eye nerves. To remove all means blindness at this present time. I say this to show you are not alone. I deal with it by staying abreast my self of the latest treatments, and also my personal relationship with God. I express all my deepest sadness and fears to him. I know not all people believe in God and that is their decision but for me it is that belief that there is someone greater than these doctors, even the very best, who can rid me of all my sicknesses… and who will rid all of our AVMs in the near future. Its that hope that keeps me from jumping in the dark puddle of despair. I say to you: find that person who you can express all your concerns with. Find the person who can uplift you even by saying nothing but just listening. I found it hard at first because I felt people didn’t want hear bout my issue so I didn’t really talk bout it to humans. Now I have 1 friend I talk to, my mom, and Jehovah God. If this site is a release use it. After all many of us have been through similar situations and have similar greetings. Our situations might not exactly match but weee are similar.
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I know this information seems to go against the grain here, but a few months ago I read an article in Science Daily: Brian Injury News. I wish I had saved it. If I find it, I'll forward it to you. The consensus was that if you have a large, fairly asymptomatic AVM that is inoperable, it is better to leave it alone until you have a significant bleed and maybe even after that. The problem with initiating treatment, i.e., Gamma, Proton Beam, Fractional Radiation, even embolization is that the side effects are often devastating in themselves. Not easy to live with a Time Bomb in your head, It takes a long time to come to grips with, but once you do, you will get on with your life the best you can and only think of it some of the time. It won't bear down on you every hour of every day. Good luck to you Owen.
Hi. Theese days Im not coping too well. The pain, attacks, tinnitus (bruit) really bothering me. Have trouble sleeping, lay awake with alot of negative thougths.
My neurosergion said the risk of loosing vision on my right side was to big during surgery. He said it is “better” to wait for a bleed, and loose vision, and operate after the bleed. He couldnt say for shore my pain would go away after surgery either. So its really up to me, but I dont know what to do.
Does anyone know if there is any threatment for the bruit(tinnitus)?
Thanks Janice. That is interesting to know and reassures me that my decision to leave my own AVM alone is the right one for now, particularly as it is not causing me daily troubles.
I don't know the answers Hege but you have my sympathy. Maybe certain medications would help you. It's so hard to cope I'm sure. If your Dr. knew for sure the only deficit you would have is loss of vision on one side, and he knows he can definitely rid you of the AVM, I would be tempted to go for it. Then again, there would have to be a very high probability that the pain would be gone also. Such a difficult decision. I wish you the best. Let us know what you decide.
Lulu and Rex, you are welcome. I have a bias though, I have a daughter with an inoperable AVM and she is recovered enough from the bleed she had to live a normal life. The only deficit she has is aphasia, and she can manage with that. We were offered fractionalized radiation, along with embolization, with no guarantee that the AVM would disappear, even after several treatments, and with the likelihood of further deficits from the treatments. I can't say that I have heard from enough people who had large, inoperable AVMs that had treatment that completely eliminated the AVM, or that were not devastated in one or more ways by the treatment. I am hoping that something new comes along that will help in either the management or in the way of obliteration for everyone. If not, we will take our chances and deal with it when we have to. Good luck.