Treatment Options > Radiation / Radiosurgery

cyberknife radiation

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LakeErie:
Jean, I had gamma knife 5 years after microsurgery on Oct 12 2106. I had early morning headaches - 4 to 5 am - every day starting day 2 following radiation. Ibuprofen at bedtime eliminated the headaches, but on Jan 24th 2017 I started facial weakness that soon prevented eyelid closure and caused facial droop. Prednisone was no use to me and a month of Decadron in Feb eliminated any headaches. AN MRI end of Feb showed central tumor necrosis, meaning the GK killed the cells at the center of the tumor instead of simply rearranging the DNA to stop growth. Necrosis generates fluid build up which swelled the tumor and the brain adjacent to the tumor which in turn affected my trigeminal and facial nerves.
By April 10th 2017 my face started to improve and end of May 2017 an MRI showed the brain edema was down 30% and the tumor fluid had resolved completely and the tumor had "flattened." By summer my face was improved enough no one could notice the weakness except me and I had to look hard. My lids closed enough I had no "exposure keratopathy" or dry eye symptoms either. By Nov 2017 the MRI showed the brain edema had resolved completely and the tumor was millimeters smaller in two dimensions. My GK doctor has over 30 years radiosurgery experience going back to when he used a linear accelerator and he said facial paralysis issues after GK nearly always resolve favorably, either to House Brackmann grade 1 or 2, grade 1 being normal and grade 2 is mild, with easy eye lid closure.
Only paralysis tip I have is to see an ophthamologist to protect your eye until you can close it completely. Improvement can occur up to one year after onset according to my doctor, but the longer the time passes the smaller the degree of improvement.
Good luck

jeanhomer:


thank you for your help.  Day six of prednisone, starting to wean . Feeling worse the fullness is causing all kinds of noises and

my hearing in my right ear is also bad.  All I hear is my own voice in my head.  Nothing sounds right. Will call the doctor

tomorrow to see if he has any answers.  Obviously as in your case the prednisone isn't working. Sounds like time and

patience is the only answer. Your last sentence makes me apprehensive. 

LakeErie:
I did not intend to make you more apprehensive. I believe it is a rule of thumb that facial weakness recovers within a year of onset. You are in your 3rd month with a long way to go. My recovery has been gradual over the last eleven months. Most of the recovery occurred in months 3 through 6. My last sentence only means that since I have progressed from a facial weakness grade 4 to grade 2 there is not much improvement left to happen. Recovery is a process, not an event, and my understanding is that more recovery happens early in that process than occurs later. And my comment pertained only to facial weakness and not a feeling of fullness in your head or any hearing or balance issues as I never had either as I no longer have either hearing or balance cranial nerves.
Also note that my doctor stated facial weakness from GK readily recovers (in the paragraph preceding the last one.) I know you had CK but you can ask your doctor about his experience with these problems you have. Have other patients with these early onset problems recovered successfully?

jeanhomer:
You have definitely been helpful and I appreciate your guidence .   Now everyday seems

be a challenge,

expecting relief with these meds is a disappointment.  Everyone is unique and symptoms

may vary,  so its

one day at a time.  This will get better I just have to be patient and rely on the good

advice from those that have been and are still there.

Thank you,

Jean




 

alabamajane:
Hi,,
I didn’t have radiation but even with surgery , these tumors require us to develop an abundance of patience at every stage of the journey,,,,  :-\ ,,, unfortunately nothing happens quickly for most of us.

I have facial paralysis from surgery and was told 12-18 mos was recovery timeframe. I did have a nerve graft though so your recovery will probably not take as long as that.

Take care,, learn to appreciate even the smallest of changes and before long hopefully you will recover fully,,,,

Peaceful thoughts,,,,
Jane

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