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AVM Survivors Network

Inoperable AVM


#21

Hi Owen ! I accidentally found out I have an AVM over eight years ago. It's in inoperable. But the neurosurgeon gave me the choice of doing gamma knife. I did extensive research and chose NO Gamma knife ! Still no symptoms. Thank God. I am 72 so my age is helpful including the fact if it hasn't bled by now hopefully it won't. At first I was scared to death and worried about it often. But life goes on. I rarely think of it any more. YOu will adjust. Trust your doctors and don't proceed with anything they don't advise. Good grief, if a doctor says no surgery, tit's clear it would be tooooo dangerous !!


#22

Hey Owen I was diagnosed with an inoperable AVM deep central brain,I saw a team of neuro types in Winnipeg Mb Canada, after reviewing my situation and the odds /possible complications I went ahead with the procedure. I would say overall I am ok with that decision and maintain a healthy realism.GOOD LUCK TAKE CARE


#23

Dear Lulu, I don't think you are a coward. In fact it requires a lot of courage to not do anything sometimes. I wish you all the best


#24

What's a TIA?


#25

My AVM is operable, but I just wanted to say that this is great, Louisa. Thanks!


#26

Did they say why they're not going to pursue another round of radiation?


#27

A wonderful lady who is going to a meeting with the top neurosurgens in the country next week is going to ask them if there is any new treatment for those of you who have Inoperable AVM's. Once she lets me know..I certainly will let all of you know.


#28

My AVM is located on my brain stem, with a very high risk of damage if any treatment is done. I had a major bleeed approx. 3 years ago, which was the first notification of the problem. At this time my Nerologist has recommended to leave it alone and take my chances. I can really relate to the "Time Bomb" reference. I have used that same quote many times when describing my condition. You learn to live with the risks and appriciate the second chance that you have been given. Good luck to you.


#29

That is wonderful Louisa. Let us know. Thanks.


#30

Not sure dgomez11, however I believe it's transient Ischemic Attack. I may have that wrong but I believe it's a small stroke or mini stroke. Look it up on google.


#31

Exactly Edward. My daughter's bleed was in July 2010 out of the blue. She has a very large deep seated AVM. We were offered Fractionalized Radiation and gave it a lot of thought, finally deciding against treatment. We were told the effects could range from not much to totally devastating and certainly either way there was little chance of totally obliterating the AVM. Since she is mostly intact, except for loss of peripheral vision and a slight speech problem, it just didn't make sense to further disturb things. It is not easy to live with, especially for someone who is 35 years old and was on their way to a career and had the world in their hands. AVM's are truly hideous. But we deal with the hand we're dealt and go from there, hoping for the best.


#32

Sally, your age is really in your favor. My daughter had an eye exam in high school and was sent for an MRI which is how the AVM was discovered. We made the round of good Neurosurgeons and all said inoperable just go and live your life. We almost completely forgot about it until 3 years ago when she had a bleed. That was years of living a normal life and no bleeds. So, I expect you will do fine and may never have a bleed.


#33

I give you a lot of credit. It is truly hard to give up processed food and the things you've been eating your whole life. I have heard the whole food diet is the way to go for health and for weight loss. We would love to do it just need some motivation. LOL


#34

Janice, thank you so much for your words of encouragement. My neurosurgeon and several other doctors I inquired with whether to have gamma knife surgery said my chance of a first bleed at this late age of 72 years old would be about 50/50. I realize that is not a very good per centage in my favor. BUT I chose not to undergo gamma knife per my understanding it's only 80% effective AT BEST and it takes approximately 2-3 years to reduce or obliterate the AVM along with many chances of some debilitating after effects. SO I chose to take my chances. I emphatically have the greatest respect for doctors. But I simultaneously recognize their "practice of medicine" is just that : A PRACTICE , as there are no absolutes or guarantees in the outcome of them practicing medicine. I just didn't want to chance anything going wrong at all that I, myself, had imposed on me.

So, thank you God, I am still unaffected by my AVM,have no symptoms, whatsoever, and lead a normal and healthy lifestyle..and am still beeeee-bopping along, trying to stay young and have positive thoughts and praying I will die without having had a bleed. !

I wish and pray the same for all of us ! Sally


#35

Such a great outlook Sally. I think you made the right decision so keep beeeee-bopping and living your life. The very best for you and for all of us.


#36

Three year year survivor I to have a AVM that cant be removed or treated with Gamma Knife radiation we tried however almost a major mistake.My case is a little extraordinary in that I had a AVM that bleed and was glued that was a success saved my life.Two weeks later I had contacted Bacterial Meningitus which at my frontal bone and had to be removed and a titunim plate put in its place a month later after enduced coma I came out of it and was bylaterly deaf as a result of the meningitus. I then was blessed with Cochlear Inplants to enable me to hear at some level of normalce that is a work in progress .I still had and have a AVM on my brain stem which we went to treat with Gamma Knife well with all the metal in my head they had to build me a special helmt to ensure the radation did not hit my brain stem or I would not be able to speak ever again that being said. When they were lowering the machine to do cat scam they hit the helmet that was screwed into my head that stopped the procedure and they had to staple the wounds
shut. The we tried another helmet that would not work because the steel was blocking the beam .So we are leaving it alone I feel that was a sign from GOD that it was not meant to be. So sometimes you have to say if it isnt broke dont fix it so to speak. But by the grace of GOD Iam able to share my storie as a most greatful SURVIVOR thank you for listening and sharing may GOD bless you and your family .


#37

Wow, getting Bacterial Meningitus was unfortunate to say the least.Sounds like the glue was used to stop the flow and then the plan was to get rid of the AVM via Gamma Knife? I guess you're right,it wasn't meant to be. So happy that you had success with the Cochlear Implants. You are right about if it isn't broke, don't fix it. Thanks for sharing and all the best to you.


#38

Did you try sending your medical records to Dr. Robert Spetzler? He is located in Phoenix, Arizona but you can send him your info. He is amazing ad an expert in AVM’S. Good luck.


#39

Owen, I do and it bothers me everyday, week in and out all year long. I experience balance issues due to the pressure the AVM causes in my right ear and along the right side of my head. It throws my vertigo way off to the point I feel like I am falling quite often so now use a cane to provide some stability. It also causes pain which is increasing significantly as of late. Sometimes the pain I experience is so bad it is almost indescribable and scares me. However, I am coping with it all through the use of prayer, meditation, music, and the encouragement and support of family and friends. I try to focus on the positive, being thankful for the nice long life I have had in spite of this terrible AVM which has been a constant part of everything in my life. I also broke down and started talking with a counselor to learn to accept my medical challenges, the fact that I have this and it isn't going away, and well, talking with the counselor has been helpful. I don't know what the future holds for me, but I do know that I fought this AVM when I was young and shouldn't have survived the extensive resection the doctors performed on me, but I did. So, I will continue to fight it as long as I live. I also cope by reading the stories on this site, reading about how brave and strong so many people whose stories are cited on these many pages it is humbling to read. When I start feeling sorry for myself, I look around and realize there are a lot of people coping with so many ailments and those who have shared their stories here have endured and persevered through so, so much and are driving on with their lives. Well, their stories are inspirational and the moderators are so helpful and encouraging, that I find it particularly uplifting. So, all these things combined help me cope. I won't kid you, it is still a struggle at times but the alternative, giving in to this AVM is worse, so I refuse to do it! r/Steve


#40

Janice, you are correct in your definition of a TIA, however, I'm not sure all doctors would describe our avm episodes as TIAs? Typically that term is used for elderly patients with quickly passing stroke like symptoms, thus transient. Several neurologists and neurosurgeons over the years have described what I called "spells" as a "Steal phenomenon". Meaning our avms steal oxygen-rich blood from other healthy parts of our brains thus producing brief TIA-like symptoms. GK