cyberknife radiation

[jeanhomer]

Hi,

I was diagnosed with a AN in February of 2017.  My AN was 1cm.  On wait and watch second mri on Aug. 3rd.  The AN grew to 1.2cm.  The neurosurgeon said he would not operate it was too risky.  He would have to go through the mastoid. I would be deaf in the that ear.  Also long surgery too risky. I should add  I am 78 years old.  He suggested I should have cyberknife radiation.   Went back to my ENT who suggested I get the second opinion.  My symptoms that brought me to ENT were, tinnitis, fullness and some hearing loss. Thought it might be wax.  Surprise!    I had my first treatment on Friday,  felt fine after the radiation,  later, the fullness intensified, and my hearing decreased.  Second treatment on Monday,  decided to wait till then to ask why.   I was just wondering if this has happened to anyone else who had cyberknife.  Kind of nervous about the next 2 treatments.  1 on Monday and the 3rd on Wednesday.  Appreciate your comments,

Thank you

[v357139]

Hi Gemini and welcome.  Sometimes after radiosurgery the tumor can swell as it starts to die.  That swelling can cause additional or increased symptoms.  So it might be good news that the tumor is dying.  Best thing to do is to report these symptoms to your doctor and see what he has to say about it.  He will have the best idea on what it means.  Best of luck and keep us posted.
Rich

[jeanhomer]

thank you Rich.  Next treatment this morning at 10am.  Definitely wil ask why fullness has increased and hearing a problem. 

I know it could swell after cyberknife, just didn"t think it was so soon.  Also tinnitis changes frequency( don't know how else to explain it.) 

Thank you,

Jean

[jeanhomer]

Finished radiation October 11th.  Had swelling and double vision after first treatment.  Steroids helped and vision cleared up.

I  guess swelling is starting again.  My head is not right, I feel very wobbly.  They gave me steroids again and this time it

hasn't helped.   I know time and patience are important, but the unknown is very scary. What are my  expectations? 

Will this be the next 4 months or so.  MRI in April to see if it shrunk.  Any suggestions in how to  navigate these next 4

months. Not complaining just confused and freightened. Thank you for any insight.


Jean

[jeanhomer]

new issues, some paralysis on tumor side .  left eye will not cooperate,  mouth is crooked.   of course,  head is a little

different.  the doctor was surprised it happened so soon. He   just put me of prednisone,   Took the first 6 pills

this morning.  I guess it's wait and see.    the steroid he originally ordered didn.t help. I think it was Decadrom. 

Any help as is this what you may have experienced and how long etc. Will appreciate any help, suggestions or whatever.

Thank you

Jean

[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

[kends2020]

Geminigirl529 How are you doing?  I was diagnosed in November. Drs. recommended CyberKnife.  Still waiting for surgery to be scheduled but now wondering if I want to go forward versus waiting.

My symptoms are mild compared to others I have read about.  Mild hearing loss and ringing in the ear which is tolerable.

Having just gone through the surgery, what would you recommend?

Ken

[v357139]

Best of luck Gemeni.  Keep us posted...

[jeanhomer]

Hi,
Haven't been or posted  on the site for quite a while.  Had cyberknife in October, went well.  No immediate changes, as was expected.  First MRI was scheduled for April.  Unfortunately in January I lost the hearing in my right ear. No explanation so the doctor had me come to is office.  He did a procedure where he injected Prednisone directly into the ear drum,  by that night the hearing returned to normal.
No problem with that ear since. But he ordered an MRI which I had In February, so my scheduled MRI for the AN in my left ear had to be rescheduled for July. The recent MRI  showed that the tumor had swelled, as it is supposed to do. 
Since the CK  my mouth looks much better and my eye is improving. I expected improvement with the fuzzy head and balance issues. Not so far.  Some good and some bad days.  I started vestibular therepy last week to see if that will help.
I'm wondering what the results are from those that have had CK and how long after did they see results.  I  would appredciate any advice  you can give.

[notaclone13]

Hi Jean,
Good to hear back from you. Several of us have been wondering how you were doing since you had issues so soon after Cyberknife treatment and then stopped posting. Glad to hear some of the problems are resolving. Hope the balance issue will soon improve as well.  Would you say your balance after Cyberknife is better or worse than it was before treatment? I found a thread on this forum called
“One year after Cyberknife balance” started by Anne S B. Here’s the link if it works: https://www.anausa.org/smf/index.php?topic=20211.msg979762416#msg979762416

It should answer some of your questions. Please keep posting so we know how you are progressing. I am pre-treatment, but do have balance and dizziness issues and find that some days are worse than others for no apparent reason. So frustrating.

[jeanhomer]

Hi Notaclone,

Thanks for the link to Anne's post.  I guess what I am experiencing is not uncommon.
Although her posts go back to 2014 they were enlightening.  I have accepted the fact that I will never regain hearing, will always have tintinis and fullness.  It is 6 months since my cyberknife radiation.  Some of the posts suggest that it is not uncommon to have symptoms 1 year later.  I started vestibular therepy, 2 sessions so far.  I also have therepy that I am doing at home.  No significant changes yet. Patience, patience, patience.
Thank you for responding to me.