Just how prevalent are side effects?

[ampeep]

I've seen many GK side effects listed on this Forum; curious about how prevalent they really are.

I asked  my neurosurgeon about traveling to another country ~1 month after GK.  He's done 40 - 50 GK & only had 1 case where the patient needed steroids.  That tumor was 2+ cm & extended into the brain.  My radiation oncologist had similar experiences with GK & said that fatigue and nausea typically occur when larger areas of the brain are irradiated, not the case for ANs.

So are folks on the forum the few with side effects and most do not post?

Any thoughts?  Am wondering if I'm over-anticipating effects. 

[rrsandstrom]

I was wondering the same thing.  My husband is scheduled to have cyberknife next week and I'm wondering about how much life will be able to continue as is.  We have a trip scheduled for Mexico in April, Michigan in July and he's hoping to paint a house this summer (in addition to parenting two small kids).  What about you?  Have you had any side effects yet in your first couple weeks? 

[ampeep]

rrsandstom,

It's only my 8th day after GK & the only thing I noticed was increased tinnitus & slight dizziness at times.  I have an 8 hr plane ride scheduled for the latter part of March.  Am hoping there are no more side effects.

Sounds like you have a busy spring & summer planned - hope things work out well for your family & husband.  At least he won't have a frame screwed into his head!

[Alison]

Hi,
like much of the experience of ANs it is unpredictable if and when you'll get side effects. From my own experience my pre treatment symptoms of imbalance, dizziness and mild tinnitus all escalated at 3/4 months post treatment.

Before that they were much the same as before treatment and I was thinking I'd escaped! They have continued to worsen with the tinnitus now a constant roar and the hearing on the AN side much deteriorated. My hearing was OK before treatment. But imbalance is my worst problem.

I have had swelling of around 2 to 3 mm in the year post zapping.

Some people seem to escape worsening symptoms but they may not linger on the forums as they feel OK. The people I know who didn't have symptoms worsen were the ones with smaller ANs around 9 to 10 mm size. Swelling has seemed to occur in those of us with ANs around the 14 to 17 mm and upwards pre treatment size, But it follows no pattern.  Some people have late onset swelling at 2 to 3 years though I think this is rare. Swelling could be growth but it is not deemed to be so until 2 to 3 years post treatment when swelling usually has subsided..

It is a waiting game and hopefully you may be one of the lucky ones.

Alison x

[ampeep]

Hi Alison,

Am hoping to be one of the lucky ones!  Did your symptoms gradually occur, or did they appear all of a sudden?

Weird, but I feel as though Waiting & Watching (for side effects) is worse than the 5 months I was on W&W!

Any other irradiates have a sense of impending doom? 

[cibi80]

I had GK almost 8 months ago, for a 2cm AN, and 10 days afterwards I went on a 12 hour hiking trip with 1600 m altitude difference :-)
Just to say how amazingly non-invasive GK can be... you should just do whatever you have planned and not think about it, then it something happens you take care of it

As fas as I understand, every case is different, it strongly depends on where your AN sits, how big it is, etc... In my case, I had absolutely no symptoms until two months ago, when some mild tinnitus started. It was a sudden thing, just woke up one morning and it was there

[ampeep]

Wow, that was an impressive hike!  Thanks for the advice - no sense worrying about what I can't change anyway!

Going to play 9 holes of golf at a really hilly course tomorrow - first time after GK. 

Haven't played much since hurting my knee (last May), arthroscopic surgery (July) & physical therapy (Aug/Sept). 

[TSS]

I had 5 sessions with a CK last Summer and felt very mild fatigue.  The mental beat down of the unknown has proven thus far to be way worse than reality. I wish that I had not changed my plans last Summer.

Best of luck!

- Todd

[ampeep]

TSS,

Was wondering what kind of plans did you change in anticipating CK side effects?

Keith

[jsanders1379]

Just chiming in- I planned not to do any air travel around the 3-6 mo. post GK...which turned out well for me- I was knocked off my feet for about 6 weeks at the 4 mo. post GK time...MRI showed swelling...

[Echo]

Hi Jeanne,

Did you require any steroids during those 6 weeks or were you able to manage without them?

How are you doing now?

Thanks, Cathie

[robinb]

Based on my research and the amount of people I spoke with that had GK, I didn't anticipate any side effects and did not change my schedule to allow for them. So when the side effects came, caught me by surprise.

Once I got over the surprise, I still made few changes to accommodate them. Now that they are in the past, I hope they stay there and continue life as before GK, with some tinnitus and less hearing on the AN side, which was the case before GK and what led to my seeking medical advice in the first place.

I think most people move on after their treatment regardless of what treatment they choose.

[jsanders1379]

Hi Cathie- I did take one week of steroids,which helped- I had a severe acute episode of dizziness, vomiting, etc. & the steroids got that under control..however, I was pretty much in bed most of the day & unable to do my usual activities for about a month. I then started vestibular therapy, which seemed to help a lot...was back to all my normal stuff in about 2 mo., but still continue to be more "off balance" than I was before GK...

[ampeep]

At 2 months post-GK,  got really dizzy, tinnitus, headaches, lost all my hearing on the AN side.  Fortunately,  the headaches went away after a week and my hearing got slightly better.  Because of these symptoms,  my neurosurgeon scheduled a MRI that showed some swelling.

Anyway I got a 6 month MRI and went to see my doctor yesterday.  He said it's good news - my AN shrunk since before treatment.  He checked out my balance and said I can come back in a year!  Was really surprised that it shrunk because I still had the symptoms.  Am hoping that my balance improves and tinnitus gets less obtrusive.