Found out my son has a hemangioblastoma in the lower spine. Would like to know if anyone has worked with any doctor in Colorado familar with this specific problem.
Thanks
Found out my son has a hemangioblastoma in the lower spine. Would like to know if anyone has worked with any doctor in Colorado familar with this specific problem.
Thanks
I don't know of anyone specifically in the Colorado area, I'm sorry. I just wanted to wish him, and you well. I pray you find a doctor who you are comfortable with. If you need a contact in New York, I have some very strong recommendations.
I had three large tumors removed from T8-10, L3-5, and a second surgery for T11-L1....
So, I know the fears, the pain, and the risks. I got a very poor reaction from my first medical opnion, and sought out a second opinion that saved my life, and the lives of my children. I am now an active mom of 17 month old twins. Good Luck and Godspeed to you all.
I live in Loveland and have received most of my care at NIH's neurosurgery department. I have met with Dr. Kevin Lillihei at University Hospital in Denver regarding spinal cord tumors. I ended up getting into the NIH protocol so he didn't do my surgeries, but I did feel confident that Dr. Lillihei was very skilled and he was very nice. One thing I really respected about him was he admitted his limitations but proceeded with confidence in his areas of expertise. Even if you don't get Lillihei, I would recommend trying to find someone at University Hospital. Good luck.
Thanks for the replies. We will check out the information you provided. I wish you the best!
Good morning Ed,
Has you son had his surgery? If so, how is he doing? If he has not and you are still looking for a good doctor, Dr. Blacklock in Houston, TX is a great neurosurgeon, in my book. He removed a golf ball size hemangioblastoma from my T10-T11 in 1994. The doctors in Baton Rouge, LA gave me no chance of walking after surgery and Dr. Blacklock gave me hope. One month after my surgery, I took my first steps and after eight weeks of therapy, I was walking without assistance.
Please let me know how things are going for your son and family. I would be happy to give you Dr. Blacklocks number.
I will keep you in you and your family in my prayers.
Take care,
Kim
Hi Kim,
Thank you for the Dr info. My son has not had any surgery yet. We are meeting with a neurosurgeon in Denver next week. He has not had any symptoms yet so we are not sure what the recommendations are going to be (surgery, do nothing, etc).
Was the Dr. you mentioned part of the MD Anderson Clinic for VHL in Houston?
Hey Ed,
Your welcome. Dr. Blacklock is with Baylor Clinic/University and Methodist Hospital.
Please keep us updated.
Take care,
Kim
Call me and let's talk about this.
1-800-767-4845, extension 4.
Best wishes,
Joyce
If he has no symptoms, then they will likely recommend doing nothing. You don't want to operate on the spinal cord until you really have to, but it's good to be tracking the tumor so you can plan and gather your team.
Best wishes,
Joyce
Hi Ed,
I'm having the surgery a week from today (Cervical 5). I'm not in Colorado but thought I'd share. I was hoping for laser of some kind, but they all tell me it has to be surgically removed. I've been to several neurologists (more than I'd like) and they ALL have sent me to Dr. Paul McCormick at Columbia in NY. He's performed many, many of these operations and I feel very confident. It would be quite a trip for you, but you never know.
Good luck!
Thanks for the info Julles. I wish you the best with your upcoming surgery.
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