Hi all. I am to see the neurologist next Thursday, and then a neurosurgeon in May. Right now I am scheduled to see Dr. Baird at the Oklahoma Spine and Brain Institute, but I have been getting mixed signals from patient reviews on him. Needless to say, I'm not sure I want him messing with my brain.
I also have Ehlers-Danlos Syndrome, but I doubt I am going to find a surgeon who knows CTDs. Because of this, I'd prefer to have a surgeon who would be open to suggestions about any potential post-op care, stitching, etc.
I was wondering in anyone knows of a good Neurosurgeon in or near Oklahoma, preferably one who listens to their patients?
We're in Wichita, and like you, there might not be too many specialists in AVMs with complicating issues in your area.
When Chari's AVM showed up about 1991, the local neurosurgeon said can't operate. Well, time and technology helped. We took our info on a road trip in 1996 to UCLA and Stanford to have them review the files. We ended up going with Stanford, since they had treated 10 times as many AVMs as UCLA.
My suggestion would be to see your local neurosurgeons for one opinion, and ask them where else would be a good place to get a 2nd opinion. As you have probably learned with your other issues, YOU are the leader of Team Arinai. You might want both local and distant DRs on your team. For us, any Dr that suggested it was his way or the highway--we chose the highway. For us, we had Drs that worked hand in hand for US.
If you are in OK you are kind of close to the Dallas/Fort Worth area. UT Southwestern in Dallas is in the top 50 hospitals in all of the USA for neurosurgery. I had my aneurysm fixed there and am currently under their care for my AVM and I LOVE the doctors there. I know many people on this board including our founder have been treated by Dr. Sampson or other Dr.'s at UTSW and are very very happy with the care and treatment we have received.
I went to UTSW a couple of weeks ago and I live in Kansas also. I really liked them. Appts with Dr. Samson are on Tuesdays if you need a team consult. They then meet on Wednesday mornings to discuss what would be best. He said multiple neurosurgeons, radiation oncologists, and interventionalists look at your records and talk about the best and safest way to proceed. My appt. took an hour and he was not in any rush or hurry. He took time to explain options and risks.
Dr. Samson was very honest and told me what he could do and then said they would discuss it the next day and call by Thursday. He told me that radiation may be an option but that is not his specialty and allows those doctors to determine what their course of action would be. He called Wednesday after the meeting and told me Cyberknife with no embolizations was an option and then mailed me a letter with all the stats on it and told me to sit and think about it for a week or two.
As for your neurologist you are going to want to find one close to you anyway. They will not do anything but monitor. He may have suggestions where to go.
University of Arkansas and St. Louis Barnes Jewish are also good options.
Yes, I have heard nothing but good things about Dr. Sampson. Like many say, it never hurts to get a second, third, fourth opinion if you can afford it and definitely ask your doc for a recommendation too. Good luck to you! :J
Robin made an excellent point about UTSW. Instead of going there and getting one opinion from one doctor, you may only see one doctor but you are getting the opinions of their collegues as well. When they decided to treat my aneurysm the whole neuro team sat down and discussed how to treat it since it was more complex than just clipping or coiling.
The neuros at UTSW only see patients in the clinic on certain days however if you are wanting to meet with two different neurosurgeons on one day they will often make special arrangmenets to meet with you on that day even if it isn't the day they are in the clinic. I wanted to meet with Dr. Whitworth who does Gamma Knife as well as with my neuro Dr. Welch and both of them are in the clinic on different days. My doc Dr. Wlech came in on a day he usually doesn't come into the clinic so that I could meet with both him and Dr. Whitworth in the same appointment. Both of them also spend a good amount of time with me and were in no rush to get me out of there.