Side Effects after Gamma Knife treatment

[Gloria Nailor]

Hi there - I am set to have GK later this month.  Just wondering how I might feel over the week or so after my treatment.  Also, wondering what long term side effects people might have.  I've read tons and talked to all my docs, but am interested in what others have experienced. My tumor is quite small, it is regrowing 2 years after surgery.  I am deaf and have regained movement in the lower half of my face.  I am told I may lose this function and have permanent numbness due to the tumor being so close to the trigeminal nerve, praying this does not happen.  I'm going to Tufts, great crew down there. I live in Vermont, it's only three hours away for me. Thanks for your thoughts!

[mesafinn]

Hello,

I had GK in mid-April and for the first few weeks (three or so), I experienced major fatigue.  I needed to sleep a lot.   But I think this was the culmination of decompressing as well as adjusting to the treatment.   I think most GK patients return to "regular life" fairly quickly, within five days or so.

Side effects--quite wide ranging--start about two to three months later.  This can include an intensification of some pre-treatment effects (tinnitus, balance, hearing); some new occurrences (hemifacial spasms, loss of hearing for some); or--what most patients experience--nothing!   There's no "expected scenario" as individuals respond so differently.

GK is a little deceiving because the first two months or so after treatment, it will seem like you haven't received treatment at all.   Perhaps it will stay this way....and I hope for you, this is the case!  And I'm not sure what the effects may be since you've had surgery already.

GOOD LUCK!  I hope your trigeminal nerve remains unaffected which should be the case because of the precision with GK.  Feel free to PM with any specific questions.

P.

[MDemisay]

Dear Gloria,

if you want to review what the effects of Gamma Knife treatment are you can easily do so by reading the GK journals of all of us. I can tell you one thing though every experience is unique, which is to say that everyone has a unique experience!  I would not trade it for another method. For me I can definitely say that the dull headache that I was experiencing just before my one shot GK experience, the dizziness, the nausea that I felt (sometimes) are all gone now. The discomfort that accompanies for a few days afterward can wear you down. But I returned to work the next day and even attended the retirement party of a colleague even though it lasted until 11:00 pm. The pin sites will be with you for 3 weeks but should begin to fade. Rest when you can and you should be fine! The most dramatic thing about this whole experience was the bandage that they put on you just afterwards! It makes you look like a WWI vet just returning from battle. I found that if you make special arrangements the doctors may even let you bring a meditation CD in with you. The machine was soundless.

I found that naming my tumor helped me to make it smaller (if only in my mind's eye) and I found this to be the very first step in it's eventual eradication! DEAD IRV is really dead.

I found that if you're prayerful that helps a lot too. Meditating is the next step. I found the whole experience relaxing!

Mike

Good luck! You are on your way to be a postie toastie! See you on the other side! Blog often, it helps! Believe it or not!

Blogging is extremely helpful as well.

[Gloria Nailor]

Thanks for your replies, it's helpful to hear what others have been through.  I have read many of your blogs and hearing others experiences is useful. My tumor is named Tommy and I thought he died over 2 years ago, but I guess I gave him too good of a home! I am so afraid that I may lose the facial function that I have regained or that new issues will surface after GK treatment. It took me two years to come to terms with my hearing loss and the paralysis of my face, I only have slight issues with balance - if I am walking and look to the side I stagger. I know everyone's experience and outcome is so different.  I am extremely lucky to have such a supportive family and friends.  God and the love of my family have gotten me this far!  And I know they will help carry me through the remainder of my journey. Thanks again for responding and sharing. Be well, Gloria

[rjmchale]

I hope your Gamma Knife treatment went well.  I had my Gamma Knife treatment in January of 2013 and I am doing very well now.  For the first couple of days I felt completely normal and did not have any symptoms.  I then got very sick for three days.  Felt like a bad college hangover that would not get better.  Once that was finished, I had dizziness and walked around like I had been drinking a lot.  The dizziness improved everyday to the point where I was able to ride a bicycle after three weeks.  Still had some fatigue issues, but nothing really that bad.  Looking back, it does not seem like that bad of an experience and I am doing everything I did prior to Gamma Knife.  One thing I did a lot of was walking.  I walked three to seven miles each day and I think this was good for retraining my brain.  It also helped my attitude.  Good luck and I hope you have a speedy recovery.

Robert

[Gloria Nailor]

My gamma knife treatment is now behind me, thankfully.  It was a very uncomfortable day!  It 's funny, I told my husband I felt like I had a hangover for a few days without the fun of drinking, just like you stated. I have been having daily headaches that are becoming progressively worse, the doc is going to try some low dose steroids for a few days. He says headaches like this are unheard of though after the treatment, so I am no sure what is going on. I am looking forward to feeling how I felt before the treatment. thanks for responding!

[MDemisay]

Dear Gloria,

Welcome to the postie toastie days! Just after the procedure. Your energy level is up rest my advice is to meditate when you can.

Balance issues should improve, I have found that doing core strenghtening exercises helps everyday. Not to sure with your individual tumor but mine swelled before it shrunk and gave me some facial twitches which thankfully have just about abated now, although sometimes even after a year out they persist. The GOOD thing is that as the tumor goes through necrosis(dies) it shrinks and the facial twitches should subside for you as well. Good to hear how you are faring. PM me if you should desire.
All the best!

Mike

[Gloria Nailor]

Thanks for the reply Mike.  My headaches were better taking 2 mg prednisone twice a day, but are returning with just one dose a day.  I guess I need to wait a few more days and see the pattern of my headaches.  It was nice being headache free for a few days.  My balance is improving, just get a little off balance if I turn suddenly.  Glad to be a postie-toastie : )  Take care

[Gloria Nailor]

Hello there - Just a quick update- my GK was about 2 months ago now.  I have been off the prednisone for two weeks now and the headaches are much better. I am experincing mild headaches for just a few hours, 1-2 times a week. Thanks for all your responses.

[Gloria Nailor]

well, here I am 10 months out from GK and I having been having headaches daily for about two months and migraines once or twice a week....anyone else have this happen so far out??

[Petrone]

Hi Gloria,

Sorry to hear you're still experiencing headaches. Have any over-the-counter pain medicines helped at all?  Alleve (sp?) gave me some relief when I was experiencing post-GK headaches last summer.  Ice packs also helped.  Hope you experience some relief soon. 

Best wishes,
Petrone

[Gloria Nailor]

Thanks Petrone, I have been taking Motrin, which does help, but I realized the other day that I used up a whole bottle in 4 months....500 tablets...I must have a stomach of steel.  The migraines are increasing too, had the worst one in my life last week, the pain was worse than anything I ever experienced post-op.  They are thinking of doing an MRI.  I talked to the GK doc and he insists that headaches and migraines are not related to my radiation.  I find that very hard to believe. I've tried some acupuncture too, massage and going to my chiropractor.  The headaches are daily now, just a mild constant ache, the pain is just where a crown would rest on your head. Not sure what is up....I will keep you all informed!

[Alphonse]

Gloria, how did you come out on the headaches?

[Gloria Nailor]

Another update: I continued to have daily headaches for about 6 months.  Motrin was enough to help the pain but I was taking a lot of it. Oddly enough, I went on an airplane to visit my mom when she was very ill and the headaches resolved !!!!! Not sure why, I believe the pressure during flying did something to the pressure in my head. I have flown since and the daily headaches did not return.  I do have one or two a week though.  I just wanted to share this with you, Be well.

[MDemisay]

Dear Gloria,

Glad to hear from you after all this time, I trust your Holidays went well. I forgot about plane travel. As I have traveled back and forth to Florida to visit my folks. The first time, I did it was quite unnerving but as I got used to it, it became more relaxing for me.

Although, I am not sure of it for others, flying was a pain for me presurgery because I had to equalize the pressure in both ears after landing. Post surgery, post GK, my experience with headaches is similar to yours. In that, I only have to pay attention to the hearing ear now!

That is a good thing!


Keep posting! WTG!

Mike