Recently Completed Gamma Knife

[Dee-dee]

I recently (October) went through gamma knife radiation.  It was not pleasant but I am sure surgery is worse.  I do have many continuing symptoms which have become worse after the radiation, including tinnitus, headaches like a knife is ripping through my brain, and the memory/concentration/fog problem has become worse, among other issues.  Has anyone experienced a worsening of their symptoms or new symptoms after gamma knife?  I was not expecting to be symptom free (I am permanently deaf in one year for instance), but I was hoping I would not get worse.

Thanks

[Seamar]

Hi, Dee-dee,

I had Gamma Knife at about the same time as you.  So far, my tinnitus is louder (hissing as from a leaky tire), and I believe the hearing loss has increased. Thankfully, I have experienced no headaches, although my balance is worse and I'm just as goofy as I was before GK.  For the balance issue I have been undergoing vestibular/balance therapy.  I had prepared for the worsening of some symptoms, and did not expect to get away this easily.  Perhaps there is more to come since I'm only a little over two months post-GK.

[HisHands]

Dee-dee,  My symptoms, prior to AN discovery, were fullness in ear, mild tinnitus & involuntary nerve twitches on left side of my face.  I had GK on 12/16/2011 (was actually very pleasant for a GK experience).  I currently have an occasional mild headache and mild fatigue once in a while.  Tinnitus is the same, but hearing is a little worse.  I went back to work immediately and concentration has been normal.  The only new issue is in my left eye.  It's not dry, but stings just a little and very few tears will flow from it (okay - I admit I have had a couple of private pity parties, but I rarely cry under normal circumstances).  I haven't talked to the doctor about the eye issue, because I just realized it last week. 

I was told that if the tumor swells after treatment, the symptoms may temporarily get worse.  I'm still learning, too, but hopefully you will notice improvement soon.  I've read so many encouraging post on this forum sharing successful progress just after experiencing horrible symptoms.  Stay positive and be encouraged that better days are ahead.  I will be sure to say a prayer that you will feel better soon.  Take care, Emma

[Brad1230]

Hi Dee-Dee
I had Gamma Knife 10 days ago and I agree it was not the most fun process, especially attaching the frame. I am experiencing increased symptoms as well. My hearing loss is much worse as well as the Tinnitus (it is almost a roar at times). My headaches come and go but have not been that bad. I get tired easy as well. For me my facial numbness has been better since the treatment but it is very early.  I agree that everything I have read and have been told is that things get worse for a while as the tumor swells after the radiation. Hope things subside for you soon!
Take Care,
Brad

[PaulW]

I had single session Cyberknife which for all intensive purposes is very similar to GK.
The worst symptoms that I had was in the first 2 weeks.
All the problems I had pre treatment got worse.
Tinnitus was like a rock concert at times fortunately only for a few hours at a time, hearing deteriorated, and balance was pretty darn average too. Memory fog.. had that before treatment, and it got worse after treatment
Hang in there, things did get better, a lot better.
I had symptoms in cycles, with alternating tinnitus, hearing loss, balance issues.
With each cycle the symptoms reduced, and the time between the cycles increased.

At 4 1/2 months after improving heaps, concentration went downhill, and nausea dizziness increased.
Took a holiday for 2 weeks and felt much better for it.

I had increasing symptoms at 4.5 months and 8 months and 11 months

At 18 months I am still improving, I feel far better today than I did pre treatment.
At 16 months the cloud lifted and has not been back since.
Hearing has improved from needing a hearing aid pre treatment to not needing one now.

All of these things may sound worse than they really were..
The symptoms were annoying, not debilitating.
More like living in a permananent mild hangover, with an ear plug in one ear.
 
That has been my expereince.
Hopefully all your experiences will be positive too.

At 18 Months I feel great.

Happy Healing

[Richard_T]

Dee-dee,

As with Paul, I had CK on thru Jan. 20, 2012, rather than GK.  However, given the similarities in delivery and purpose, I decided to respond to you and hope that it helps.  I had fullness in my right ear, some memory fog, reduced hearing and tinnitus prior to CK.  After CK, I had the same symptoms with slight increased tinnitus and, arguably, slightly increased memory fog and reduced hearing.  I have not really had any other symptoms to date (knock on wood).  Since I am only 24 days post CK, it is, of course, too early to tell what may happen to me in the ensuing months or next couple of years.  Stay tuned.

I consider my "ride" so far to be relatively smooth.  I hope that you have good luck with limited symptoms in the future.

Richard

[RAB]

Hi, I had GK in June of 2010.  I won't bore you with all my symptoms pre and post. (For me, it gets overwhelming when I read all that.)
But I wanted to put my two cents in, as far as worsening symptoms.  Yes, I did have worsening symptoms for a while for the first few months immediately following (bad headaches, tinnitus, hearing), but most of them have resolved pretty much, except my hearing has gotten worse.  Don't despair.  You will get passed the worst of it and become acclimated to the rest.  Good luck!

[sharondaniels]

Hi~  I had GK on Dec. 1, 2011.  Newly diagnosed, previously I thought that the tinnitus was just happens as you get older.  My hearing had diminished quite a bit in my AN side....but again, thought it was just due to the incredible loud roar I hear all the time!!  But, since the treatment, it is louder and I do have more sharp headaches, a lot toward the back of my head on the AN side.  My vision seems to have taken a turn for the worse as well.
But, with almost 3 mos down and 3 to go, hopefully I will have had some shrinking. 

[Bonnie B.]

I underwent GK surgery five days ago.   For the most part, it was a positive experience and I would do it again rather than have brain surgery.

I have headaches now all day.  I realize that I'm only five days out but, do the headaches eventually leave?

I haven't experienced any other side effects.   I didn't have much hearing prior to GK so not having it now is no surprise.   They say I will never get hearing back in the left ear but, I have adjusted quite well to that. 

My tumor was 1.7 cm.

Thanks