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AVM Survivors Network

Inoperable AVM


#61

I too was told that my avm was inoperable because of the risk of being paralyzed. After seeing 3 different doctors, I received the same answer: "just pretend you never knew about it in the first place". So, after about 2 1/2 years, I finally found avm survivors.org and was told about harborview medical center in seattle. Even though it was 1 1/2 hours away, I decided to get one last opinion. And I'm glad i did because I was able to get gamma knife treatment on January 21st of 2014.

It doesn't hurt to get a second opinion.


#62

Hi Owen, I was diagnosed with my inoperable AVM approx 18 years ago.I was also told that I would face paralysis or even possibly death from surgery as it is too deep and encroaching on brain structures. I did get opinion on gamma knife, but was told no for that also. I know at first I was frustrated because I just wanted the AVM out of my brain, but at the risk if sounding "corny", knowing that it's there forces me to take the best possible care of my health and to appreciate each day. I make sure not to dwell on it, and when I experience symptoms, I use that as a reminder to slow down a little.


#63

Hello, my AVM was inoperable due to the fact that I would possible loose my eye sight and short term memory. I was given the chance to have the gamma knife done, with little side affects. I did loose my hair in the place it was put in, I also had some weakness on my left side and my ability to spell is total gone lol but Thank goodness for spell check. It took a little four years to have it completely gone but I am not AVM free!!!


#64

Thats really interesting Rex, thanks. There may be hope for us all yet then. I have naturally low BP and eat relatively healthily. I do find life fairly stressful generally though. 2 out of 3 huh?


#65

Thanks LuckyLady. You are an inspiration with your positive attitude.


#66

Lulu's follow up reply to Owen's regarding "inoperable AVM's" makes me remember the three things only my neurosurgeon advised about my 3 cm AVM which was found accidentally 8 1/2 years ago when I was 64.
At that time I elected to bypass having gamma knife surgery, the only treatment available to me and my particular AVM, because the AVM is inoperable. I am most satisfied that was my decision though I pray daily thankfulness I've not had a problem with nor any symptoms.
The three things advised were :
1. Most important of all, to keep my blood pressure at a normal level, which I take medicine for.
2. not to lift anything heavy which I limit to probably ten lbs which probably would be only groceries
3. and do not fly in a private plane that lacked having decompression.

Does anyone advise other things to avoid ?

Sally


#67

Thanks Sally. Thats really interesting. I never thought about lifting. But it makes sense. The only thing I was advised was not to go through labour when I had my children. I had to elect for C-Sections.


#68

I was also told no scuba diving, do not play sports or participate in activities where you can get hit in the head, and I'm not a drinker but doctor said no more than one or two glasses of alcohol.


#69

Hi Beverly,I am so glad I came across your post. Praise God you still alive and was able to write this. I am seeking a miracle and hoping to live a long life. Mine too is inoperable and it scares me I pray for a miracle it frighten me daily that it would bleed again. I have had 3 bleeds since April of 2018,I cry many days sometimes wishing to die but still hoping for a miracle. With each day and each onset of pain I worry. I am afraid to go out alone,I cry lots of times, I beg God not to let me suffer. I read for strength and hope. may God continue to bless you and the AVM chat sight. It’s nice to have comfort. May you remain strong.
Terr