4 months post Gamma Knife

[clight]

Hello, I am new to this group and am hoping some people can help or relate. I have gamma knife in late Nov. 2019. I am now experiencing several weird effects and am not sure if it could be due to the radiation. 1. I will get a moment of dizziness that only last for a few seconds and goes away. It seems more frequent. 2. If I turn my head too fast or bend down too fast I get a throbbing headache for about 30 seconds. Not all the time but it is happening and it never did before. I have heard that side effects come months later? Why? because the tumor is swelling? Why does it swell and for how long? Any help would be great.

[jami]

HI Clight,

I had CK, and also expected any weird effects to happen much later, based on what I read.

But for quite a while after i was having odd effects, off and on for the first 6 months, then they paused, and then again at 9 months. At the 9 month mark, it was significant. I could watch my eyelid twitch if i sucked on a straw, the 'numbness' in my face was all over the place. Odd headaches but quick.

I just had a MRI and all looked good (AND then the symptoms died down).  My dr said it probably just the nerves scarring and healing. (And i think stress dials it up).

Here is my non-medical commentary. About 20 years ago I was shot (long story) and had a bunch of nerve damage in my right shoulder. As the nerves started to heal, which took a long time at least 18 months, there were a lot of very odd feelings. Some sharp pain, other weird feelings. It was odd.  Eventually things went back to normal. I have to keep reminding myself of that experience.

I suspect others may have better insights than I do.

[PostCK]

I dealt with some significant facial pain from ~6 mo to 2 years post cyberknife. Docs said this is a common timeline for post-radiation swelling, although the swelling itself wasn't really observable in the MRI. Stanford neurologist was very helpful and we found that neurontin was effective in reducing the pain to 0. The pain gradually faded and I'm off the neurontin now.

[kestes]

I had GK Nov 2018 and you bet I started having the same "dizzy Spasms" as I would call them at about 5-6 months.  Several times a day but would last only seconds.  They ordered and mri and yep it was swelling.  A few GKers before me told me that would happen but at about the 12 month mark it would settle and it sure did.  I dealt with it for 6 months or so.  My doc would have given me steroids but I hate those things.  I just would stop when the "spasm" would start.  Even tho I had the spasms, I continued to hike mountains in Colorado and Utah, just was slower and would stop when need to. 

Make sure your doctor knows tho about the symptoms and I hope for you it calms down!  Part of the fun GK process!! 

I am doing well now a year and half out.  Still have tinnitus, hearing loss, and some balance issues but that is about it. 

[Gearbox123]

Hi I am sorry to hear that your feeling that way . I had very similar experiences that you mentioned, my tumor was small at 7.5mm -8 mm when I went for GK @ NYU it swelled to 1 cm after six months returned to about 7.5 mm . I was put steroids  Predisone .  I believe after GK Because I was almost completely deaf and about after a week or so of the steroids a good amount of my hearing came back. It basically swells because it’s been traumatized as well as the nerve, it takes everyone some time but everyone is different and to be completely honest I think that everyone experiences it a bit differently and that because of the location, size and general health of that person. I did and still continue to work doing my vestibular exercises at least a few times a week, you can look at them online or go to a vestibular physical therapist. Maybe another scan would be helpful, you can try antihistamines, or even a muscle relaxer as I know that has helped me. I seem to have more problems than normal with very humid weather. I hope that was helpful to you and hope that you get some relief, it can be a difficult situation to be in and totally feel for you. I wish you all the best!

[Freelander]

Hi Gearbox,
You note that after you started Prednisone post GK due to increased dizziness and other unwanted symptoms, and, if I interpret correctly, you had been deaf, but after you started the steroid your hearing returned?  Would you please tell us more about this amazing occurrence?  What did the doctors at NYU say? Were you deaf, or did you have very poor hearing, before having the GK? Hope you are feeling better, and that each passing month brings relief and encouragement.

[ngerson]

Who and where did your treatment?