I am reaching out to anyone for a few answers and or references. My younger brother has been fighting an AVM for a long time (since he was 2). He was not supposed to live to much longer after his diagnosis due to the AVM's massive size, he is now 20 and will be turning 21 this month. Doctors have told us many times they could not take it out but could continue to embolize, 9 embolization later he is still here but the AVM continues to manifest. Though we are running out of options over the last year we have seen his headaches and hemorrhages become more frequent then before as well as his epilepsy. He is seen by a Doctor in New York City and we have been referred to another his name is Doctor Saadi Ghatan also in NYC. Anyone heard of him? He has recommended and craniotomy to remove epilepsy and a benign tumor located in the occipital lobe. Something to keep in mind we live in Texas and no doctor here has ever wanted to treat my brother we are always sent to NYC, I could go on and on. To sum it up I want to get some feedback from people who have had a craniotomy. To see if anyone has dealt with the doctor or have heard of him. and seeing we live far from NYC does anyone know of financial aid programs, grants, foundations, etc... Thank you for reading and God bless.
Texas Boy25..I had a craniotomy, but every case, every AVM and treatment is very different. My prayer is that other members know the doctor and provide you with financial information. Your brother will be my thoughts and prayers.
Hi, my son recently developed a bleed and was diagnosed with avm. We lived in India then . But doctors in India, uk and few opinions which we took from usa all suggested it was inoperable due to size and also not possible to embolise due to multiple feeders, the only option left was radiation which would not be safe due to his age and has only 60-70% success rates. One of the doctors did suggest to check with Dr Spetzler at Barrow neurological institute, phoenix. He is world known authority in avm’s. He operated on my son with 100% success and no residual deficit. He has operated many complicated avm and i think it might be worth taking his opinion. We went from India and were uninsured but the team was very supportive and helpful financially. Good luck and will pray for him.
Who has been your doctor in NYC thus far?
Barrow in Phoenix has great reputation
I have not heard of Dr. Saadi Shatan in NYC. We did travel from CT to NYC to consult with Dr. Bernstein who was highly recommended to us. He is well known for his AVM treatment. We also consulted with Dr. Konzioka who does Gamma Knife surgery in NYC. We liked both of them and felt they were very knowledgeable.
I am sorry, i don't know of any financial aid programs, grants or foundations.
Hi, if I were you, I would try to get in touch with Dr. Suen and Dr. Richter at Arkansas Children's Hospital. I live in Houston and drove my son to Little Rock, Arkansas, and they were able to take care of my son's localized AVM. I know you have a different situation, but I think they would have some options for you, or at least get you pointed in the right direction. Also they are much closer than NYC.
This is the link to Dr. Richter
http://achri.archildrens.org/researchers/richterg.html
Best of luck to you.
I agree with Gloria. Contact Barrow Institute for a second opinion. Dr. Spetzler came up with the grading system and seems to be the "it" doctor who is not afraid to operate or tell you to leave it alone. He seems to really know his boundaries. They will allow you to send films and consult over the phone for a reasonable price. I think it was $200.
On another note which has no real meaning or purpose either but being a child of the 80's. Brett Michaels was treated at the Barrow Institute for his aneurysm and donated every thing for the waiting room.
I think this is what I am also going to do. Arizona isn't any farther than NYC and has much warmer weather.
Robin
Dr. Spetzler saved my sons life! KU medical Center and the Mayo Clinic deemed his AVM inoperable. We sent his records to Barrows in Phoenix ad Spetzler told us he could resect. Luke had NO adverse side effects after his craniotomy. Every situation is different but I would urge you to seek out his advice. He is highly gifted and specializes in AVMs. God bless!
Try to contact Dr Spetzler; he did as much as he could for my daughter and was able to shrink her AVM by 80% after 15 embolization's. They couldn't get to the rest of it. I would also recommend Primary Children's hospital in Salt Lake City all the neurosurgeons there are good and they work as a team so only the most qualified will work with your brother even though they will all be kept up with the case. We also saw the doctors at Jefferson Hospital for Neuroscience in Philly PA and they were great although there was nothing they could do given her AVM location. They were supportive and helped ease the pain with the headaches which became an almost daily accurance.
I understand your frustrations because we didn't have just 1 doctor we could call/talk with; we had teams and I couldn't begin to tell you if that was better or not but the few teams willing to take her case were all wonderful. We went to different doctors because of referral and we moved to be closer to Jefferson Hospital once they couldn't do any more for her in Salt Lake City.
We see Dr. Bernstein has been very good to us.
That is who we see Dr. Bernstein, Dr Saadi is a new doctor on his team now I believe.
I want to Thank you all again for your time. (UPDATE) We just learned last night from NY that they think my brother is in a critical situation due to recent hemorrhages and are requesting us up much sooner than we anticipated. I will be taking all of your considerations and sending info to other doctors. God bless all of you and your loved ones.
I was told in 1990, I had slim to no chance, went to Barrow to see Dr Spetzler, he saved my life, not once but 2x due to AVM in Brain and Spine, Best of Luck and you and your family will be in my prayers, please keep us posted. Thank You
God Bless and I will be praying for him.
Prayers for you, your brother and your entire family
I don’t know of that doctor you mentioned. However, I love my doctor who is at nyu now. I have been seeing him since 2004. He is very compassionate and most importantly to me honest. Dr Howard Riina in Nyu. He WAS NOT was original surgeon in 2002, but has been keeping me going since 2004. LOVE THIS GUY. He was at Cornell Weill medical when I met him. I’m at the point now where I don’t need to see him for 5 years unless something is not right. All I have to do is pick up the phone and call, his staff is just as fantastic as him.
If you would like his number please let me know via email.
I too suffered a 3 cm right frontal lobe avm. I have been thru 3 surgeries in 2002, 1 in 2004, 1 in 2006. Dr Riina has been keeping me alive
For what it's worth, I too have suffered well over a dozen hemorrhages due to my AVM. It has been inoperable and a monster threatening my life since 1973. Two years ago, even though I underwent not one, but two, proton radiation treatments at Mass. General in Boston, MA. it leaked and HAD a subsequent hematoma HAD to be removed. Dr. Neil Martin and team, a leading neurosurgeon at UCLA in S. CA. was able to remove both the hematoma and the AVM that has plagued me all these years. He is a world renowned vascular surgeon. I have been around the world. He is the doctor that performed the craniotomy. Please check with him. Best of luck, Susan
I hate to say this because MOST people will say it sounds bad BUT the truth is you have paid into “welfare” your entire life.
Take up residence even as homeless in the state you choose and get their medical aid for him. Remember hospital liaisons will help you with these things too.
We ALL pay into this. Also apply for SSI if he doesn’t already receive it.
There are rules but its worth looking in to.
It is not the same as SSD. SSD is paid through (federal) Social Security. SSI is paid through the state welfare program.
NY has some of the best university doctors but even my friend there asked me for a Dr. for his very good friend.
Chicago has one of THE VERY best. His name is Dr. Konstantin Slavin.
He has a 61 page resume extending up to being the President of the Russian American Neurological board President.
He was granted special permission by the USSR to enter school at age 5 (which is practically unheard of) was bumped up I think 3 grade levels and graduated medical school with honors by the age of 16.
I left the doctors I had that dropped the ball on me for him and his conference.
http://www.baku.ru/enc-show.php?id=154726&cmm_id=276
They saved my life (for my 2nd time).
BTW, radiation should be HIS choice if its possible. Children much younger go through it for cancer using some of the very same machines.
I hope and pray for you that the embolization they have done has not weakened his arteries and veins more sending blood in different directions.
Dr. Barrows at Emory Clinic in Atlanta is another expert in AVMs. I saw him when they discovered mine. I pray that your brother will be healed and will live a full life.