On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about how close it was to my Brain Stem so he left it in and treated it with the Gamma Knife. For whatever reason 12 years later this tumor decided to grow again and it was decided it better come out. The surgery was successful, but no one prepared me for what was to follow. I was in Rehab for a month, and now over a year later I am still only able to walk with a walker, have a brace on my left foot due to ataxia, have blurry vision, and am still going to P.T. once a week. I also have a tumor on C-6 of my spinal cord and the doctors are thinking this could be compromising my healing process.
After going through this last surgery, thinking about another one to remove the tumor in my neck is pretty down on my list. UCSF has said that radiation is not an option as to where it is in my spinal cord. I am wondering if anyone out there has a doctors name that may look at my scans for a second opinion. I am looking to see if there are other treatments out there other than surgery that other doctors may be using.
If anyone has any contacts at John's Hopkins ect. it would be greatly appreciated. I am willing to travel, but my first hope is that I may send my current scans for another opinion.
Thank you in advance for any help you might be able to give me.
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Referral Question
- By plischeske
- Posted April 22, 2009 at 3:28 pm · 1 reply
- In Finding a doctor
- Shared with the public
1 reply
- By joyceg98
- Posted April 23, 2009 at 4:52 pm
- Report post
I hear you. But sometimes the non-surgical approaches have a more difficult recovery than surgery. The best answer can only come from a doctor who is looking at your scans.
Write to me at director@vhl.org and we can give you some possible sources of second opinions, though the docs at UCSF are quite good. It is always a good idea to get more than one perspective on the issue.
There are some very good doctor recommendations in the discussion http://www.inspire.com/groups/vhl-family-alliance/discussion/dr-oldfield/
Best wishes,
Joyce
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