Replies to This Discussion

Permalink Reply by Troy Garcia on August 23, 2010 at 2:40pm

Yes Greg,

I agree with you.... My AVM was in the middle of my brain and it bled twice and they were still able to get rid of it..... They are all operable if you have the means to get them checked out.... If you want to die instead just do nothing about them....

Greg K said:

Troy, I agree with u 100% that all AVMs are operable to an extent, whether it be with radiation, embolization, or crainiotomy. I believe it all depends on the size and location as well as whether or not the avm has bled previously. Also, if the symptoms become bad enough, a neurosurgeon is more likely to take the chance of surgery, especially if symptoms are getting progressively worse. I hope ur next MRI/angio shows u are in the clear! Sounds like you've had a helluva time. -GK

ModeratorPermalink Reply by Hanne on September 17, 2010 at 9:45pm

Every AVM is not operable!

It all depends on size and location together with risk and possible outcomes.
It is not possible to remove my AVM by surgery due to the size and location.
When I tried embo they managed to glue 20% but it also resulted in hemorrhage and hemiparese. Today the hospital will not even do an ordinary angiography on me because of the high risk it involves. Gamma (photon) and proton rays is not an option either due to the size (>6cm) and location.
The radiologist told me that the risk of getting paralyzed is 100% even if they managed to dissolve the AVM, because the cyst that would replace the big empty space would also 100% cause it.
So, unless I want to get permanently paralyzed I do not have any treatment options and really that is the same as saying that the AVM is inoperable!

Do not forget that each case is different. It has not been easy for me to digest the news that mine is inoperable. You were lucky you had a choice, I have not.

Hanne

ModeratorPermalink Reply by Hanne on September 19, 2010 at 10:24am

Troy Gracia said:
Every AVM is operable whether or not manually. I have been to Boston to have mine zapped and also to Florida to lay on the Gamma Knife machine, and also in New Orleans to lay on the Gamma Knife machine. So to say they are not operable is false according to me......

I think there might be some misunderstanding here. An operable AVM is an AVM that can be treated, be it surgery, embo, photon (gamma) or proton.

An inoperable AVM is an AVM that can not be treated by surgery, embo, or radiation. Due to the high risk that involves in the process, when the risk is higher than leaving it alone.

So, even if we as patients want to operate our AVM it is not always up to us to decide.

Hanne

Permalink Reply by Chris Safford on September 20, 2010 at 10:08am

I've had mine zapped at Mass. General in Boston, too. Didn't work. Dr's decided that nothing should be done! It is stable right now & until it bleeds again, I will leave it alone. I do not want more deficits or problems!

Hanne said:

Troy Gracia said:
Every AVM is operable whether or not manually. I have been to Boston to have mine zapped and also to Florida to lay on the Gamma Knife machine, and also in New Orleans to lay on the Gamma Knife machine. So to say they are not operable is false according to me......

I think there might be some misunderstanding here. An operable AVM is an AVM that can be treated, be it surgery, embo, photon (gamma) or proton.

An inoperable AVM is an AVM that can not be treated by surgery, embo, or radiation. Due to the high risk that involves in the process, when the risk is higher than leaving it alone.

So, even if we as patients want to operate our AVM it is not always up to us to decide.

Hanne

Permalink Reply by Troy Garcia on November 23, 2010 at 8:49am

Hanne,

If your AVM has not bled then why operate on it. If it has bled like mine twice in my lifetime then they had to operate on it..............................

Permalink Reply by bekah dee on December 1, 2010 at 8:04pm

i wouldn't have had my stroke if the doctors never tried to operate on it. my doctors have said because my stroke was so severe, they would not continue the procedures. they told me about a doctor in arizona that specializes in avm, who would meet with me. so technically, my avm is probably "operable," but if my doctors in denver don't have enough confidence in avm and brain, why would i trust a doctor in arizona who doesn't even know my background? :oP

Permalink Reply by Troy Garcia on December 1, 2010 at 10:04pm

rebekah donnithorne said:

i wouldn't have had my stroke if the doctors never tried to operate on it. my doctors have said because my stroke was so severe, they would not continue the procedures. they told me about a doctor in arizona that specializes in avm, who would meet with me. so technically, my avm is probably "operable," but if my doctors in denver don't have enough confidence in avm and brain, why would i trust a doctor in arizona who doesn't even know my background? :oP

Permalink Reply by Troy Garcia on December 1, 2010 at 10:13pm

Well Rebekah,

I am an acute victum of the AVM. My AVM was located in the center of my brain. And the first neurosurgeon didn't know what to do. Until he got in touch with Dr. Kjeldberg in Boston, Mass. Then I went up to Boston in I believe 1980. Well I haid the leksell knife and they told me I was cured like two years after. Ah well I finished high school and went thru the military and then it had bled again. Ah well then I had to go get treated in Florida. I was one of the first people to lay down and get the gamma knife thru another neurosurgeon. Ah well this was '99 then. And then that neorosurgeon had missed the darn AVM. And then I had gotten the treatment about four years after in New Orleans, LA my hometown and I had fount out about two months ago that my AVM is gone from my brain. Ah what a relief. Living with an AVM is not nice especially if it decides to bleed on you. I had bled twice in my life. And it is not fun having to little mini strokes.
So do not defer what a neurosurgeon has to say about the darn thing. Just agree with him and go get your treatment. And hope that it won't take about thirty years to heal............ If you know what I mean?

Troy Garcia said:

rebekah donnithorne said:

i wouldn't have had my stroke if the doctors never tried to operate on it. my doctors have said because my stroke was so severe, they would not continue the procedures. they told me about a doctor in arizona that specializes in avm, who would meet with me. so technically, my avm is probably "operable," but if my doctors in denver don't have enough confidence in avm and brain, why would i trust a doctor in arizona who doesn't even know my background? :oP

Permalink Reply by Jaszi Jazz - Brisbane on June 12, 2011 at 11:39pm

I think every AVM can be operable - if willing to accept the risks - I went to 10 neurosurgeons and 9 or them said no its too risky to operate or do anything -  but i kept seeking for an opinion, one i wanted to who give me a chance and I did - I managed to have stereo tatic radiation therapy, for me I have no side effects from the treatment and things are slowly getting better - of course not all instances are like this and there are risks that need to be accepted if you want to go down that road, but I guess my message is to everyone - get as many opinions as you can, don't just settle for a death sentence if you know there is a better answer out there. The choice is yours once you weigh out your risks. Get as many opinions as you can, one thing i found is not many doctors or surgeons are knowledgable about AVMs and because of this they sometimes hold back in what can be done, find a neuro who does know and can give you the right advice xx