My AVM surgeon is involved in research

Hi, all. I just joined the group so I’m hoping this is the appropriate place to post this. My AVM surgeon, whom I just saw last week, is involved with research. He told me at my appointment that he has just been able to successfully take AVM cells from a person and grow them in a lab. Now researchers will be able to inject the AVM cells into mice (poor mice) and test treatments and possible drug therapies. He and his hospital are also hosting an international symposium of AVM doctors/researchers there (at UAMS in Little Rock) in October. He is hopeful and optimistic that there will be better and more permanent treatments for AVMs in the next few years. Hooray for that! Kimberly

Oh wow Kimberly that is really great news. Thank you ever so much for sharing the input. Never did like mice, but all of the sudden I am kinda feeling sorry for them. Will the mice get headaches, etc. ??

Kimberly thank you for sharing that information . Who is this physician of hope ?
Oh the possobilities …

It’s wonderful to know that there’s someone out there who is motivated to find a treatment for AVMs.

Debbie

It took me many years but I found a really great, compassionate, skillful AVM surgeon/doctor at the University of Arkansas for Medical Sciences (UAMS) His name is Dr. James Suen (pronounced sun) He trained Dr. Waner in NYC when Dr. W was in Little Rock. He’s the BEST! He will promptly respond to e-mails and people can send CTs, MRIs, medical records and he will give a preliminary consultation through e-mail that way. I can’t say enough good things about him. I went through a lot of “toad-y” doctors until I finally found a Prince. And that he is so involved with research is icing on the cake. Kimberly

I wouldn’t be surprised if the mice got headaches–I guess it’s just payback for the headaches they’ve given me when I find one in a cupboard! Kimberly

Julie said:

Oh wow Kimberly that is really great news. Thank you ever so much for sharing the input. Never did like mice, but all of the sudden I am kinda feeling sorry for them. Will the mice get headaches, etc. ??

LOL Like the sense of humor

Kimberly Buehrer said:

It took me many years but I found a really great, compassionate, skillful AVM surgeon/doctor at the University of Arkansas for Medical Sciences (UAMS) His name is Dr. James Suen (pronounced sun) He trained Dr. Waner in NYC when Dr. W was in Little Rock. He’s the BEST! He will promptly respond to e-mails and people can send CTs, MRIs, medical records and he will give a preliminary consultation through e-mail that way. I can’t say enough good things about him. I went through a lot of “toad-y” doctors until I finally found a Prince. And that he is so involved with research is icing on the cake. Kimberly

Oh wowwwwwww…I have gone from laughing about the mice to being in total shock. Did you ever find out exactly what the first set of doctors had done?

Just some info said:

Any type of research is positive. PLEASE ask alot of questions. I was involved with a research facility when my AVM was first discovered, growing up in the mid-atlantic states in the U.S. their are several research hospitals. I thought my brain AVM was going to be the answer/cure for this disease. But what I got was the worst group of people that any sick person should never meet. I was told by the surgeon that the AVM was removed in June of 2002 and in October 2002 my seizures started again. I told the surgeon that the seizures started again and he acted like that was not possible, the surgeon said that he could operate again and remove more brain. I stopped him right there and asked what they removed during the first surgery and and he would not answer the question only saying that they removed the AVM. At that point I went to another place for a second opinon called Johns Hopkins in Maryland and a doctor from Johns Hopkins looked at the MRI’s and Reports from the research facility (that I brought with me) the doctor looked at the reports and asked “What happened to you” VERY SCARY! The doctor showed me the AVM, that was NOT removed as I was told it was. PLEASE BE VERY CAREFUL IN RESEARCH YOU ARE A DISEASE NOT A PERSON!

You are soooooo right about asking questions, and lots of them. You can never ask enough. And if you forget something or are not sure, ask again, ask other doctors as well. Even ask another of their staff members. I double chk every dr with my other drs, and if one of them has a single negative thought…I cancel that dr out immediately…not taking any chances. I am so very sorry that you feel a embarassment. I do not feel you have anything to be embarassed about at all. You were totally innocent. I am sure that you truly had faith that these drs could help you. Though it is a terrible shame what took place. I think if I were in your shoes (which I’m not), I would probably look at this situation more as “I tried, I trusted, I believed, I have learned…They were the ones that were wrong”. You have stood tall and spoken out and that is what more ppl need to do. You are helping others by voicing out. So thanks. Thanks for speaking up and reminding each of us to ask the questions, double ck into things regardless of how large or small, or how much we think we know, there is always one more question, no matter what.

Stand tall and hold your head high.

Just some info said:

No.
I have been a member of this site before and I left it because what I am going through I have a
dis-trust of doctors and I have negative opinion of doctors and I don’t want to scare people from getting help.
My operation records say that the “Medulla” was removed during surgery. Johns Hopkins showed me that my Medulla was NOT removed during surgery. It was my Amygdala that was removed.
My Medulla is still in my head.

Please, PLEASE ask questions! DON’T assume.
Always remember the very bottom graduate from any
medical school still gets called doctor somewhere.

I think we all should know the GOOD and BAD doctors. So that’s why I am going to correct
my name by the way it’s Jeff and I live in Naples, Florida. I am really embarrassed by the way I let these doctors treat me. BE STRONG AND ASK QUESTIONS LOTS OF QUESTIONS!!

Don’t be emberaassed, Jeff. I had doctors lie to me plenty of times. We are supposed to trust their judgement and we put our lives and our future in their hands and sometimes they don’t deserve our trust. I’ve gone to doctors with credentials up the ying-yang who didn’t know as much about AVMs as I do–or anybody who can google AVM for that matter. It wasn’t your fault–we’ve all put our trust in the wrong people from time to time, including doctors. The doctor in Ark. is doing research on mice–not people–so I think I’m safe. I think since AVMs are “managed” and not cured, doctors tend to be overly optimistic about the patient’s outcome sometimes. I’d rather not be given false hope, personally. Kimberly

Julie said:

You are soooooo right about asking questions, and lots of them. You can never ask enough. And if you forget something or are not sure, ask again, ask other doctors as well. Even ask another of their staff members. I double chk every dr with my other drs, and if one of them has a single negative thought…I cancel that dr out immediately…not taking any chances. I am so very sorry that you feel a embarassment. I do not feel you have anything to be embarassed about at all. You were totally innocent. I am sure that you truly had faith that these drs could help you. Though it is a terrible shame what took place. I think if I were in your shoes (which I’m not), I would probably look at this situation more as “I tried, I trusted, I believed, I have learned…They were the ones that were wrong”. You have stood tall and spoken out and that is what more ppl need to do. You are helping others by voicing out. So thanks. Thanks for speaking up and reminding each of us to ask the questions, double ck into things regardless of how large or small, or how much we think we know, there is always one more question, no matter what.

Stand tall and hold your head high.

Just some info said:
No.
I have been a member of this site before and I left it because what I am going through I have a
dis-trust of doctors and I have negative opinion of doctors and I don’t want to scare people from getting help.
My operation records say that the “Medulla” was removed during surgery. Johns Hopkins showed me that my Medulla was NOT removed during surgery. It was my Amygdala that was removed.
My Medulla is still in my head.

Please, PLEASE ask questions! DON’T assume.
Always remember the very bottom graduate from any
medical school still gets called doctor somewhere.

I think we all should know the GOOD and BAD doctors. So that’s why I am going to correct
my name by the way it’s Jeff and I live in Naples, Florida. I am really embarrassed by the way I let these doctors treat me. BE STRONG AND ASK QUESTIONS LOTS OF QUESTIONS!!