Patient Forum

The CyberKnife Patient Forum is designed to provide a place for people who have been diagnosed with cancer, their family and friends, to exchange useful information and provide support to one another. The Forum may also help people find answers to questions they have about the CyberKnife treatment experience. Accuray strives to facilitate these exchanges and encourage discussions. Recently we have experienced some aggressive or inappropriate spam postings. We are diligently working to resolve this issue and thank you in advance for your patience.

Birgit Fleurent, Chief Marketing Officer, Accuray Incorporated

  Print 
Glomus Jugulare tumor
Leah Cole
Posted: Tuesday, June 03, 2014 3:55 PM
Joined: 6/3/2014
Posts: 1


I think I'm in the correct forum as its my understanding this is at least in the same area as an acoustic neuromas. My Glomus Tumor was quite large and was treated with Cyberknife surgery at Stanford Univ., in 2007. I am happily almost 7 years post surgery with great clinical results. The tumor shrunk to half its size, and has maintained that success since. I now get mris only every other year. When I presented I couldn't walk a straight line, i had horrible vertigo, i couldn't stick my tongue out straight , and i was very tired.Thought i needed transfusions! Dr's Griffith Harsh and Iris Gibbs, and their whole team are just wonderful people to work with. As this tumor is rare, I was told 1 in 1.5 million its hard to find someone to talk to regarding the symptoms i've had since.Someone that is who has been through it. I had 3 days of fractionated cyberknife at 1hr per day. initially there was no obvious result but within 2 months, my fascial nerve went out, i lost most of the hrg in my right ear, and got tinitus. I was very low on energy and in the following months reduced my work week to 4 days per week to cope. A couple months later I'm happy to say my facial nerve came back but first it was quite spastic for about 1 month. With time i recovered my energy for the most part, but was given an rx for norco when my headaches got so persistent I was taking 8-10 Advils a day and not controlling the pain. By the time i was about 3 years out, I'd say the headaches lessened and i took medication less and less, but the hrg never recovered and the tinitus is always there made very loud by noise. the balance problems for the most part are gone though i seem to run into a lot of things. The last couple of years though, my symptoms have worsened significantly(which happens to coincide with my going through menopause, and all those hormonal fluctuations.) seems like its made me a lot worse. My sensitivity to noise which was extreme directly after surgery, had improved, but it is extreme again now. My headaches come most every day and seem related to noise, and motion, and stress.(I'm a busy Lawyer) When my head aches it also feels kind of floaty and strange(best i can describe) and if i can't lay down and be still or take meds ill get quite nauseous. Seems to my non-medical mind that those nerves were damaged, and are still hypersensitive, and are being effected by the hormones. would love to have input from anyone out there who has been through this. don't get me wrong, I'm quite grateful for the surgery and the results. Just wondering if I'm the only one dealing daily with these problems?
L. Cole
radsrus
Posted: Tuesday, June 03, 2014 4:29 PM
Joined: 10/10/2008
Posts: 4435


I am sure there is some damage. I am less sure as to whether hormonal changes play a role, although I think that is possible. I don't know whether things like neuron tin might be helpful. See. Dr. Gibbs and see what she thinks

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


 

Jump to different Forum...