Since I have to travel for treatment I might as well go for "the best"
I live in Kansas so everywhere with experience is far. Where have you had success?
I know that it is a grade III or IV depending on the doctor. I also know it lays under my motor area so surgery is too risky. Doctors here suggested embolization and then radiation. I have not had a bleed but did suffer from one seizure.
Thanks,
Robin
You might want to check out?
In Colorado.
http://www.swedishhospital.com/find_a_doctor/detail.htm?id=2596311
Yakes would be my pick. I like his medical background. ~Elizabeth
This is one name and place that has never popped up for me. Interesting. I saw he deals with a lot of extremity avm's. Does he also do cerebral ones? The neuro unit sounds amazing.
I have known about my AVM for about 30 years but it is in my left frontal lobe bordering on my motor cortex so no one, over the years, has wanted to mess with it. I have had seizures but am completely controlled on AEDs all these years.
I finally had a small hemorrhage in late Sept 2012 that temporarily caused slight right-sided weakness and some word-finding difficulty. The very mild word-finding difficulty resolved in a couple of days. The right-sided weakness took about 4 weeks to resolve.
I have had consults with a number of drs. to try and determine what to do. Unfortunately, my AVM is large (4.5 cm) and complex (fed by anterior and middle cerebral arteries), and also a Grade 4 on Spetzler-Martin grading system so it is no easier to deal with than before. But technological advances and refinements seem to have added a little more wiggle-room. I have had all kinds of different opinions.
Since most everyone says surgery is too risky, the next best option for me is some type of radiosurgery (but not for a cure) plus invasive surgery later (to completely get rid of it) after it closes/shrinks to a reasonable size. Dr. Robert Spetzler (Barrow Neurological Insitute) advised no treatment and two other docs want to embolize and do invasive surgery (Drs. Hunt Batjer and Duke Samson UT Southwestern). (I gathered six opinions in all.)
Dr. Michael McDermott at UC San Francisco is a world-renowned neurosurgeon that specializes in gamma knife radiosurgery on AVMs. I just had a consult with him this past December.
Dr. Neil Martin at UCLA passed on invasive surgery for my AVM and referred me to Dr. Nadar Pouradian, a neurosurgeon at UCLA that does radiation. He proposed hypo-fractioned radiation plus invasive surgery down the road.
I have heard Dr. Gary Steinberg at Stanford is fantastic. I will seek his opinion and then finally decide what to do. It all seems to require a leap of faith as there are risks with every modality.
Dr. John Day at UAMS in Little Rock, Arkansas. Very familiar with AVMS and vascular anomalies. I have gone to UAMS myself for an extremity AVM, but my doctor (ENT AVM Expert) says Dr. Day is fantastic, as is UAMS as a medical facility.
Funny Debra--
You go from CA to Arkansas (I'm assuming you lived in CA when you were treated). And we went from KS to CA for treatment..........
Sorta like I've observed with fishermen: Guys on shore will stand at the edge of the water and cash as FARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR into the water as they can. Guys in boats drift up near shore, and cast as CLOSSSSSSSSSSSSSSSSEEEEEEEEEEEE to the shore as they can. Somethin's wrong with this picture.
G'Day,
Ron, KS
Ivanna, So good to hear from you....you are such a fighter! Good luck with your upcoming decision. I think you probably know my opinions about radiation vs. craniotomy on avms as large as ours. Thoughts and prayers are with you. -GK
Actually ron, I lived in California when I went to Little Rock 2.5 years ago. Unfortunately, when it comes to AVMs, the best doctor is not always in your backyard. Yes, its a pain, but I think its great that people are realizing that they need to go wherever the BEST doctor is for AVMS if insurance or finances permit.
My husband had his life saving embolization by Dr. Demetruis Lopes out of Rush University in Chicago. Incredibal man with a very calm, confident way. We knew we would be OK within minutes of meeting him.
Good luck to you!
http://www.healthgrades.com/physician/dr-demetrius-lopes-yfndh
I tried to find your info but could not. Can you send me your experiences.
My neurosurger was Dr. Chris Ogilvy at Mass General in Boston. I had Proton Beam Radiation, which is only available at a few hospitals in the USA. Proton Beam Radiation did not provide me with any side effects. Since you are willing to travel, look into it.
If i remember correctly, did you say that you had family in the Dallas area? If so I do suggest UTSW as I had brain surgery there for a complex aneurysm and was very happy with my care and my doctor (Dr. Welch is my neurosurgeon but because it is a teaching hospital you get the opinion of ALL the vascular neurosurgeons there regarding treatment). Dr. Welch does the neurosurgery aspect of it but Dr. Whittworth does the gamma knife radioation. I also met with him and was very happy with his responses. Both he and Dr. Welch advised me to do nothing at this point since I am not having problems and I am at low risk for bleeding. Dr. Welch gets excellent reviews and I can tell you I am very happy with him and his team. He works under Dr. Duke Sampson who I am not too sure if he is practicing anymore or not.
If you did end up needing hospitalization UTSW is a very nice hospital. They have room service, nice private rooms that kind of make you feel like you are in a hotel instead of a hospital :p. In the regular rooms they have a couch that turns into a bed so you can have someone stay with you overnight as well which i really liked.
In the end, what I have found is that it is best to find a doctor that has experience and is one that you not only trust but get along with. If you are able to travel to a few hospitals and your insurance would cover it I would meet with a few surgeons to not only see what their opinion is but also get a feel for their persona. Of course you don't want to choose a doctor just on their personality or how well yo uget along with them, but at the same time you can really tell a lot about a doctor (or anyone for that matter) by meeting with them to talk.
I would also look into hospitals that have not only Gamma Knife but Proton therapy as this may be an option for you with a larger AVM. UTSW does not have proton therapy just yet but I think the hospital in Houston does and that hospital is nationally ranked as well.
Was it able to cure it?