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I had surgery on my spinal cord (T5 & 6) last October. My surgeon had never seen a hemangioblastoma, and did not know how to remove it. I have now been told by two surgeons that this tumor must be removed. I'm desperately looking for a doctor who has experience with this rare tumor. I live in Colorado, so I would like someone here if possible, but needless to say I want the right person for the job, no matter where they are! Please help!
I have a surgeon in New York to whom you should send your MRI's. He is incredible, and removed all three of mine. Friend me, and I will send you details. If you can't make it here, I am sure his office will find the very best person to recommend to you.
You absolutely are doing the right thing. DO NOT let yourself be the first patient your doctor works on, on this. Feel free to read my postings about seeking second opinions.
There have to be some neurosurgeons in Denver that have dealt with hemagioblastomas. The doctor that has worked on my son in Omaha is very familiar with HBs and has a couple of patients with VHL.
Contact Kevin Lillihei at University Hospital in Denver. I consulted with him years ago for spinal hemangioblastomas.
Hi,
It looks like you have a resource in your area now, but if you need an additional resource then I strongly recommend Dr William White at Barrow Neurological- St Joseph Hospital in Phoenix, AZ. He was my miracle doctor!
Contact me via "Friends" and I will be happy to give you more info.
Best Regards,
Patricia
Thank you Jenny. I've friended you, and look forward to hearing more about the NY doc.
Thanks so much. I actually sent all my records to Dr Witt, who is in the same practice as Lillehei. Witt told me he didn't think he had any more experience than my current surgeon, and couldn't recommend anybody else, so I'm still looking. I find that very strange, but perhaps he's protecting the surgeon who tried to remove my tumor the first time.
I say consider DR Robert Spetzler at St Josephs Hospital in Phoenix Az He performed spine surgery on my son last year and is excellent
Pupa Good Luck
Thank you so much. Mary Pearson (VHL chapter leader in my area) also recommended Dr Spetzler very highly. I am sending my MRIs and reports to him this week.
All good suggestions. You want the best "vascular neurosurgeon" you can find. Recommendations from others are the best.
Best wishes,
Joyce
Joyce, I think you were the one who responded mentioned a connection to your researcher at the university here in Denver, and that he had recommended Dr Kevin Lillihei. I have been looking all over this Inspire site to try to find that message you sent, and for some reason I can't find it. Was it you who sent it? If so, can you give me that information again about the Denver vascular surgeon Lillihei recommended?
I can recommend Dr Dean Chou at UCSF San Francisco. Not close to you, but excellent neurosurgeon. Has done 3 surgeries on my spine to remove hemangeoblastomas and cysts. He's straight talking and can be a little brusque, but you know you'll get honest, straight answers to your questions, and he has a lot of experience with vhl tumors.
Thank you! I really appreciate the referral. Have you had neural deficits from those surgeries? That's got to be hard to have to keep having surgery. How are your spirits?
I lost some feeling in my right hand from the first surgery. This has got worse with the subsequent surgeries but I'm still able to drive and work. It's fine motor skills that are the problem, like writing. I keep my spirits up. It helps having two young kids. Good luck with finding a surgeon.
Wow, I'll bet having kids does keep your mind focused on more enjoyable things! Thank you for your help, and I wish you all the best.
Rhonda
I had sent the information to you as a personal message, so it should be in your messages. The vascular neurosurgeon at the University of Colorado is Dr. Bob Breeze.
Best wishes,
Joyce
Thank you Joyce. The Messages tab is so small, I couldn't find it. Thanks for your diligence and help!
Hi I live in Colorado Springs.
Dr. Lillihei operated on my son last August to remove a large thoracic spinal cord hemangioblastoma. The end result was successfull but it was a difficult set of procedures and recovery.
Dr. Kumpe at U of C first did an operation to cut off blood flow to the tumor. A few days later Dr. Lillihei did the operation to remove the tumor. The operation lasted 14 hours.
Took about 3 months of rehab for my son to get back to a normal life, but he is doing very well now and starting college in August.
Here is some detailed contact info - hope it is helpful and wish you the best:
Kevin O. Lillehei, MD
(303) 724-2289
University of Colorado Department of Neurosurgery
12631 E. 17th Ave., Campus Box C-307
Aurora, CO 80045
David A. Kumpe, M.D.
(720) 848-6527
University of Colorado
Cardiac & Vascular Center
12631 E. 17th Ave.
Aurora, CO 80045
We also had MRI's reviewed by MD Anderson Center in Houston to get a second opinion prior to the surgery"
Eric Jonasch CPB7 3501
GU Medical Oncology
MD Anderson Cancer Center
1155 Pressler Ave
Houston, TX 77005
ejonasch@mdanderson.org
(713) 745-7391
Ed, thank you so very much for the detailed referrals. This is now the third reference to Lillehei, which helps give me confidence in him. Because of your note, I believe I'm actually ready to go ahead and make an appointment with him and proceed.
I'm so glad to hear that your son is doing well. Does he have any neuralogical deficits? I have spent some time worrying about waking up paraplegic, which is of course a real concern with this surgery.
Rhonda
I consulted with Lillihei prior to being accepted to the NIH. If I had not been operated on in Maryland, I would have gone with Lillihei. It was Lillihei himself that recommended that if I had the opportunity to have NIH/Dr. Oldfield operate, to go for it. He was very humble and he knew his limitations. I would see him again in a heartbeat. He definitely has the best interest of his patients at heart.
Thank you thank you thank you lifeandhope! It seems that many tracks are pointing me to Lillihei, at least to get started.
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