I have a brother in law that has vhl and it has caused a tumor on his brain stem and would like to know where he might get treatment for it.
I have a brother in law that has vhl and it has caused a tumor on his brain stem and would like to know where he might get treatment for it.
Hi Starduster,
Not sure what part of the world you're in, but, if you're anywhere near St. Louis, I could give you some info for my neurologist. I had a brain tumor 5 years ago that was wrapped around my brain stem 3 times and he removed it. Fantastic job. Let me know if you need the info. Also, have you looked to see what info the VHL Family Alliance can provide? They are a great resource! Best of luck to you and your family!
NOT SURE OF YOUR AGE BUT MY SON HAS VHL AND RECENTLY HAD 4 TUMORS REMOVED FROM HIS BRAIN ONE BEING BRAIN STEM AND THE OTHER 3 CERABRELLUM. JOHNS HOPKINS HOSPITAL DR. JALLO PEDIATRICIAN NEUROSURGERION IS HIS TREATING PHYSICIAN. PRAY THAT ALL GOES WELL.
Please call us here and we can try to help you find someone in your geographic region. The brain stem is particularly tricky, so you need the best vascular neurosurgeon you can find.
One idea might be to ask Dr. Lonser's team at NIH to review the scans. Once they have seen what is going on, they might be able to suggest a name or two in your area, or they might invite him to come to Bethesda. Can't promise of course, but if you contact me directly I can give you the numbers at NIH to request a review of the scans.
Best wishes,
Joyce
My Dad is having a tumor removed from his brain stem on Monday by Dr. Lonser and Dr. Pluta at NIH. They said it could take 10-22 hours! They'll have to split the brain stem. I'm out here with him because I am having a pancreatic tumor removed Tuesday. Good times for our family. Anyhow, I'm told Dr. Lonser and team are the best. Definitely give them a call and see if they can help you. Good luck to your brother-in-law.
irishbookworm ,
we are in tennessee but at this point my brotherinlaw is in winston-salem n.c. and they have told him that the tumor is inoperable. However I for one refuse to accept this until we have exhausted every avenue we have available. I don't give up easy. Would greatly appreciate any onfo you can give on this matter because they are willing to move if necessary.
to everyone who replied to my email:
I really appreciate all the help on the info we are going to try to get him home from winston-salem and contact some other doctors who we have gotten leads on. your help and prayers are greatly appreciated and all of you will remain in my prayers also. It has been hard on us all because my brother in law is only 35 and his dad died from complications from surgery to treat a vhl tumor and he was only 40 at the time. I hate to say it but I think that is what is hardest on him right now and he has pretty much just gotten tired of fighting the pain and has given up. I hope and pray that we find help before too much longer. God bless and keep you all and thanks again.
Hi Starduster,
I'll send you a friend request to share all the info, but, Joyce has a point too. Check with the NIH and see what they recommend. Granted every tumor is different, however, I have a surgeon here named Dr. Bob Backer at St. John's Mercy Hospital and he did my surgery. Initially it was to remove the brain tumor on my cerebellum, but, once they opened me up, they found it had wrapped itself around my brainstem three times. He did the surgery to remove everything in about 7-8 hours. I had a long recovery, but, a lot of that was due to the actual brain tumor. There is also another large hospital here called Barnes and they have a GREAT staff and I have a few doctors there as well. I'm willing to bet they have a few neuros that deal with VHL. Dr. Allison Whelan is the geneticist there and she could probably recommend someone. Check with Joyce at the VHLFA too. She's GREAT. Message me and let me know if you want more details. I'm MORE THAN willing to share and help out where I can!
Senator Kennedy was just operated on at Duke Unniv. NC by Dr. Alan Friedman for a cancerous B/T. I know the doctor is familiar with VHL and probably real busy after this one. I would probably check with him for another opinion.
http://enews.earthlink.net/article/hea?guid=20080602/48437040_3421_13345200 80602379967772
Gale
Hi, there. Please call me at 1-800-767-4845 to discuss this. It's not an easy question -- brain stem is tricky.
Where are you geographically? (or rather, where is he?) We will see if we know of a good neurosurgeon near you.
You will need to find the best VASCULAR NEUROSURGEON you can find -- most likely at a large teaching hospital or neurological institute. It's partly about skill, but also about technology, and you need to go to a place that has the right technology as well as a top-notch surgeon with experience in this tricky area.
For anyone who has a good neurosurgeon they trust, please let us know. We keep a list of neurosurgeons who have been recommended by patients who have had successful treatments.
Thank you,
Joyce
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