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Joined: 10/10/2008
Posts: 3
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I had 3 CK treatments for a 3.2x2.8x1.8 CPA Meningioma last September. My pre treatment symptoms were hearing loss and tinnitus. After the treatment I had planned to wait at least 12 months before having a follow-up MRI. Primary side effect of the post treatment has been consistent moderate fatigue and some depression. So far I still have the hearing loss and noise and in July a new symptom appeared. I have very brief right-side facial collapse/spasms. It is morbid looking. I consulted with my CK team, Neuro and Oncologist and had a full set of MRI scans. The radiology results said no change and the area was stable. My doctor told me although the radiologist read the films as stable her impression was that the tumor was slightly larger. (In the written report I see that the dimensions are 1 mm larger overall than the reading last Sept.) This summer I had a root canal on my right side that was quite tramatic. I suppose it is possible that the soreness and pressure of the root canal could have caused this problem. To date I have had 31 spasms, usually not more than 1/day and not every day. My question is what now? At this point my doctor recommends wait and see.
CPA Meningioma treated 09/08
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Joined: 10/10/2008
Posts: 2347
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Unless the symptoms are severe enough to require steroids, all you can do is wait. We frequently see late swelling from treatment of meningiomas, so that may be all this is. It could also be damage from the treatment. Growing tumor is possible but less likely.
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
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Joined: 10/10/2008
Posts: 3
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CPA Meningioma treated 09/08
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Joined: 10/10/2008
Posts: 3
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It’s been 15 months since my CK treatment. I just completed follow-up MRI scans. The results were positive. The films and radiologist's report confirm that there is no new tumor growth.
In July I was concerned because I had a new symptom—right side facial spasms that last about 1-1.5 minutes from start to finish. The right side of my face loses elasticity and I can’t open my eye. I track the occurrences and to date have had 128. Not every day. Sometimes 2-3 in a day.
At my appointment with my Neuro to review the scans, I brought a picture of my face during a spasm to show her exactly what I was describing. I think she was surprised at the severity of the spasm and the frequency. Obviously the facial nerve is irritated. She likened it to a twitch. She felt it was appropriate for me to start me on a medicine that might help the nerve relax and reduce the frequencies or stop the spasms.
She prescribed Neurontin and told me it may take some fine tuning to get the right drug and dosage but she thinks it will help.
Along with coping with the tumor symptoms and side effects of the CK treatment I lost my job. I was afraid that I would have a facial twitch during a job interview. My doctor was sympathetic and prescribed a small dose of an anti-anxiety medication for me to take before my interviews. It helped me relax and I made it through two 1 hour interviews without incident. In fact I have a new job! There are ways to cope with deficits!
The main side effect I had from the CK treatment was fatigue. I did not have hair loss. I had 3 fractionated treatments from more than 140 angles. I feel my radiologist did a wonderful job with my plan.
My meningioma abuts my brainstem and displaces some of my cerebellum. The symptoms I had before my CK treatment, ear noise, hearing loss and a slight vision tremor remain. And now I have the facial twitch but it has been stable no worse since it started.
I hope sharing my experiences will help others. I believe that CK was the right choice for me. From my personal research it is likely that with surgery the recovery would have been extensive and the deficits much greater. Every morning I remind myself that this is the first day of the rest of my life and to make the most of it. Happy New Year to all!
CPA Meningioma treated 09/08
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Joined: 10/10/2008
Posts: 2347
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Keep us up to date with your progress
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
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Joined: 2/22/2010
Posts: 8
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Thank you Susie! You might have no idea what kind of hope your experience has given me. My mother has CPA meningioma too; what she is going through now is the severe double vision and what's worse, the cross eyes she will have when trying to look at things. We are terrified by the thought that this may be permanent; and your experience just gave out a possible answer that it may be due to irritated nerve. Thank you very much!
I also wish you all the best in a new future, with a new job - congratulations!
Chin Up!
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