AVM doctors

I disagree totally with what Shalon said about AVM doctors. It is a very specialized field of medicine and it pays big time to go to one of the AVM clinics with doctors who treat AVMs on a daily or weekly basis. I had to learn the hard way and suffered alot because of it. Kimberly

Kimberly,

I couldnt agree with you more! I saw a neurosurgeon who doesnt specialize in the treatment of AVM's and he recommended radiosurgery. He pretty much told me that no other treatment options were viable. I'm so glad that I listened to my mother and got a second opinion. I went to the University of Miami and was seen by Roberto Heros (I would highly recommend him.. fantastic neurosurgeon) and he is going to treat my AVM with embolization first and if its not 100% obliterated, the following day, he's going to perform a craniotomy. What a huge difference in treatment options, right!

Chikeena, Embolisation alone will NOT obliterate an avm! Whether it’s 100% occluded or 50% occluded, it’s still there unless surgically removed by crainiotomy or SRS. Somthing to think about:) -GK

Greg,

My apologies, I may have used the wrong terminology obliterated, occluded, eliminated... whatever its called. LOL. My AVM is small and although not many.. some AVM's do experience occlusion with embolization alone. I think the percentage is only about 20% but Im hoping and praying that I fall within that percentile. And if not, then craniotomy it is. Either way, for me, it was much better than hearing that radiation was my only treatment option. I guess I'm preparing for the worst but hoping for the best. :)

I have heard that only 5% of AVMs treated with embolization successfully obliterate/occlude the AVM. I’m one of those lucky ones and underwent an embolization procedure that obliterated 95% of my AVM. I am now waiting for CyberKnife treatment to treat the residual 5% of my AVM. Good luck and keep my AVM friends in may daily prayers - you will be fine Chikeena :-)))

I was recently told by my neurosurgeon that my avm wasn’t treatable via surgery(embolization) either and that only treatment was gamma knife. went for consult with radiation oncologist who said that she couldnt do it either because of its location(optic chiasm and pressing on pituitary stalk deep in central part of brain) saying that gamma knife and surgery would leave me blind. i dont know what to do. i have no insurance and was able to see the docs only because of program for low income families at local hospital here in Nashville, TN but soon I will be moving to Norfolk/Hampton Virginia area and i really need a second opinion but i just dont know where to start. the radiology oncologist also stated that she would do more research to see if she can get some more info but she said it would take two weeks or more and on June 13 i am moving to va and so she knows i am on a deadline and i hope she gets on search quickly.



Chikeena Harrell said:

Kimberly,

I couldnt agree with you more! I saw a neurosurgeon who doesnt specialize in the treatment of AVM's and he recommended radiosurgery. He pretty much told me that no other treatment options were viable. I'm so glad that I listened to my mother and got a second opinion. I went to the University of Miami and was seen by Roberto Heros (I would highly recommend him.. fantastic neurosurgeon) and he is going to treat my AVM with embolization first and if its not 100% obliterated, the following day, he's going to perform a craniotomy. What a huge difference in treatment options, right!

I don't know what Shalon said, so I can't speak for that...however I will say this:

Everyone's AVM is different. In my case, it's not about "curing" because that's virtually impossible. It's about treatment. Embolization has allowed me as close to a "normal" life as possible, I'm pursuing a PhD, I'm married, I may not be able to carry my own children, but I can still pursue having kids. I think in most cases it's so important to trust your gut. Some people's AVM's are small, other's like mine are tremendously large. It's a step by step process that I'm just figuring out now, after close to 26 years...that no one is the same. You guys with neural AVM's speak of crainiotomy's "curing" your AVM's and needless to say.....I'm disgustingly jealous. Alcohol oblation isn't a cure, neither is embolization, surgery, or gamma knife. It's a treatment.

That's why these crazy doctors say they "practice" medicine. Because if they knew it they wouldn't need the practice. :)


Melinda, I love that quote about doctors “practicing” medicine. It’s funny because it’s true! Kimberly
Melinda said:

I don't know what Shalon said, so I can't speak for that...however I will say this:

Everyone's AVM is different. In my case, it's not about "curing" because that's virtually impossible. It's about treatment. Embolization has allowed me as close to a "normal" life as possible, I'm pursuing a PhD, I'm married, I may not be able to carry my own children, but I can still pursue having kids. I think in most cases it's so important to trust your gut. Some people's AVM's are small, other's like mine are tremendously large. It's a step by step process that I'm just figuring out now, after close to 26 years...that no one is the same. You guys with neural AVM's speak of crainiotomy's "curing" your AVM's and needless to say.....I'm disgustingly jealous. Alcohol oblation isn't a cure, neither is embolization, surgery, or gamma knife. It's a treatment.

That's why these crazy doctors say they "practice" medicine. Because if they knew it they wouldn't need the practice. :)

HI All, I dont know what was said but I do know God sent me one of the best doctors in the field, I had my emb two of them the next dy after the second one i had my crainiotomy it has now been seven months and I am back at work and doin great I do have some balance issues but they are just that issues I have some sight issues again they are just that. I am grateful just to be alive and to be able to wake up each morin without thinking that I have a time bomb in my head. Maybe more docs need to get the training cause with this site you can see this is becoming a big issue to deal with. Look for the best cause they are out there. Mr Dr. Chen in Houston is great so if any one wants to use him please do. Bed side charm as well as he knows what he is doin. My was large to large for anything but to take it out and I am "avm " free. Everyone be blessed stay prayed up.

Melinda said:

I don't know what Shalon said, so I can't speak for that...however I will say this:

Everyone's AVM is different. In my case, it's not about "curing" because that's virtually impossible. It's about treatment. Embolization has allowed me as close to a "normal" life as possible, I'm pursuing a PhD, I'm married, I may not be able to carry my own children, but I can still pursue having kids. I think in most cases it's so important to trust your gut. Some people's AVM's are small, other's like mine are tremendously large. It's a step by step process that I'm just figuring out now, after close to 26 years...that no one is the same. You guys with neural AVM's speak of crainiotomy's "curing" your AVM's and needless to say.....I'm disgustingly jealous. Alcohol oblation isn't a cure, neither is embolization, surgery, or gamma knife. It's a treatment.

That's why these crazy doctors say they "practice" medicine. Because if they knew it they wouldn't need the practice. :)

Kim, to respond is to say that my life was saved by a doctor who’s specialty was is treating AVM patients. However, there are many with AVM’s that do not have that available because of many reasons, insurance, place they live, etc. My prayers are for everyone that has an AVM.

Kimberly,

I'm not sure what this is in regards to or what I said that you disagree with. It would be helpful if you mentioned what it is that you read from me.

I've always advocated for people to see someone who specializes in AVM's as MY opinion. I've always communicated that I feel absolutely MOST comfortable seeing a doctor who does this daily as opposed to someone who just has "heard" of them. I have always stated that I personally wouldn't trust a doctor who has the best of intentions but not the expertise to back it up. I also say that each patient has to do their own research and find the best option for them. Simply stating, don't take MY word for it but educate yourself and be your own expert. But I've never been one to suggest having an inexperienced doctor as a good choice! If that is the choice someone ultimately makes, who am I to say they are wrong??? Each of us makes our own decisions based on many factors and I can't even begin to imagine all of the things people consider in their own journeys.

If any of my statements have somehow implied otherwise, then I didn't speak well. And I would apologize to anyone who took my statment to mean that. I don't ever recommend it. But I'm not sure what my recommendation means either way in the grand scheme of things! Again, I'm not sure what it was you read though.

Hope you are doing well and have found the right doctor for you and your AVM!

Shalon