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AVM Survivors Network

Inoperable AVM


#41

Thanks for sharing that Sally. It has made me feel a whole lot better about my own decision not to go ahead with risky embolisation and Gamma Knife treatment. If I get to 72 without any problems I will be very thankful. Best of luck for the future.


#42

Thanks a lot. I really appreciate that and wish you all the best.


#43

I suppose I don’t understand “inoperable” because there’s the risk of it rupturing and that can be fatal. For my husband, I know he can hear, but can’t talk as of yet since surgery…but it’s a miracle that he’s alive today after so much bleeding and a stroke due to rupture. SO it’s the risk you have to weigh. Could it rupture and cause much worse damage? What are the chances of that? Also what are the chances of becoming deaf or mute compared to the chances of the same happening in case of rupture? And some have posted good comments here that there are other treatments. Have you checked into those? Maybe they would be safer and have a better outcome in your circumstance??? Ask the doctor lots of questions. Get a second opinion. I talked to three doctors about placing a shunt for my husband and now I am going to go back to the original doctor with the questions they gave me.

Hope this helps some way…I know I am not answering the question you are asking, and am not in your situation…just sitting beside my husband for the 4th month and hoping and praying for him and working with him. I see progress every day…and he’s alive! hope this doesn’t come across as negative, just hoping people will weigh both sides.


#44

You are right Greg. I wanted to say also that my daughter's right hand and figures will get numb all of a sudden she will a little incoherent, and trouble functioning for about 4-5 minutes, then it goes away. One of the Neuros believe that there are small seizures and not to be too concerned unless they start happening all the time and start to last a lot longer. She takes Keppra for there years twice a day and these little episodes are the reason they don't want to take her off it.


#45

That is great for you husband Mary. I suppose he had a craniotomy for the AVM.This tells me that his AVM was either smaller than ours or in a location that was not as threatening. Or, it could be that his situation was as such when he went in the ER that surgery was the absolute only option to keep him alive. Sometimes it works that way and most surgeons will opt to take the chase rather then see someone die. I don't really know. Of course, when diagnosed you should see as many professionals as you can afford to see. You have to take what they say sometimes with a grain of salt if the patient had a particularly large AVM located in an eloquent area of the brain. It is truly in their interest to have you do something.However, they aren't all of that persuasion though and some will tell you-leave it alone. Best of luck to you and I hope your husband continues to improve every day.


#46

Hi! For 38 years I had an AVM that was inoperable. I pronounced itself with a massie hemorrhage at age 15. Six years later they had developed the Proton Beam Radiation. I underwent that twice, three years apart. Every AVM is different and I was not a candidate for any other option. I suffered more hemorrhages than I can really count. I went 29 years without a bleed, probably due to the radiation strengthening it, and then suffered another rupture that created a near deadly hematoma. All those years later technologie progressed to the point where the hematoma and AVM could be operated on and safely removed. I had this done at UCLA in CA. by Dr. Neil Martin and team. You need to weigh the risk of deafness and the risk of a hemorrhage taking your life, and how you feel. Your surgeon is key and I would go to the ends of the earth to find one that felt they could spare my hearing. I also would check into embolization and see if that is possible and not as risky. It bothered me for 38 years and I felt like a walking time bomb. My craniotomy recovery is a real challenge, but I look as though nothing ever happened. A brain hemorrhage is also quite a recovery and can also be catastrophic. Best to you.


#47

Good luck Susan with recovery from your Craniotomy. I understand how you feel. Yes, it takes a lot of research and good doctors to come to a conclusion on how to treat, and if to treat.
Sounds like you've been through a lot over your 38 Years. I hope you have a successful recovery and NO MORE BLEEDS.


#48

like mini strokes


#49

Not sure, however, the Neuro said not real TIAs but seizures. Whatever they are I am glad they are months apart and not of a long duration.


#50

Sounds like a great machine. Glad to hear about your story Ricki.


#51

Owen,

Have you gone to more than one neurologist's/neurosurgeon's opinions yet? If not, do so, please!
Before I have my brain surgeries done, I met w/ several neurosurgeons to see what they thought of my AVM. Some would NOT touch it, yet a few I found who would be willing to do the surgery.

Good, good luck to your future.

Lisa A. Stuckel


#52

Hi Owen
not sure of what lobe your AVM is located in, but my sisters, sister-in-law had an AVM bleed while in labor with her daughter. She had some facial paralysis right after the delivery, but fully recovered. When they did her MRI/angiogram that said it was "too deep" to operate. I am not sure if she ever investigated other options such as radiation/gamma knife or embolization. She has never done anything to treat it and this was 26 yrs ago and she is fine. She did have her tubes tied as the doctor felt another pregnancy could aggreviate the AVM. Wishing you best of luck. Not sure where you live by the doctor who treated my AVM was incredible, he is now at NYU, his name is Dr. Kondziolka, would trust him with my life!


#53

I had my bleed in April of 2012. It was an inoperable cerebral bleed going across both hemispheres. It was done by the Texas Stroke Institute in Plano, Tx. It was embolized twice and I had follow up radiation. It is a miracle I am alive. I had no deficiets due to the bleed. God truly saved my life and it is shrinking slowly -but surely. It could not be removed due to the location and size. We will do another angiogram next year to check and see what it is doing. For now I pray and live each day to the very fullest.


#54

Hi Livers1992. I fully sympathise with your sisters sister-in-law. My AVM was identified a few years before I had my first child. I had been told that if I ever had a baby I would need a C-section because labour might put too much pressure on my AVM. During my first pregnancy I really suffered with bad headaches and this may have had something to do with my medical state as well.


#55

Great attitude Simpson40. Hope it continues to shrink.


#56

Mine cannot be removed. It is in my chest cavity wrapped around my spine. I am currently getting embolization treatments by Dr Yakes. I am currently 12 days post embolization. It is very frustrating that it cannot be removed. However that is just the reality of it right now. I refuse to think that it won’t ever happen. Technology and knowledge is ever evolving. So for now I am trying to get the best treatment for me and my current needs. I hope it helps and I hope I don’t have to do too many of them. Not fun.


#57

MPadilla, it seems the Dr. is preparing your AVM for further treatment. You are right, technology is constantly evolving, No, Embolizations are no fun and I hope you recover quickly from your most recent.


#58

hi there i lived 20 years with sn untreated avm in my right temp lobe after it bled initially. i lived a comparatively normal life, had 2 sons, before finally having radiosurgery when it was offered to me. you can live a normal life with an untreated avm its just an attitude of mind.


#59

My avm is in the center of my brain and i cant remove it. I had the gamaknife done and it failed but im going in soon maybe to get a second one. If i think about it i will go crazy. So i do what i can to stay busy and move forward in a positive way.. You cant get better if you think negative. Im was an athlete so defeat is not in me. I cant accept that. Probably why i have a therapist lol Try to be around positive people. Alot of these stories are really sad and hard, but i just let GOD lead the way!


#60

Thanks a lot for your posts Harley and Elysha Renee Puga. This is my opinion as well. It is human nature to want to treat and get rid of something like an AVM asap. But if you can't you just have to accept it and get on with things as best you can. A positive mental attitude can be an incredibly powerful thing.