Gamma Knife - Headache

[RAB]

Hi, I am new to the forum.  I just had gamma knife radiosurgery last Friday.  I was wondering if anyone who has had gamma knife, could tell me how long the pin sites will be sore.  They really hurt when I touch them and give me headaches.  It has been one week and they are still very tender and feel like there is a bump under each one.  Especially in the back.  I also would like to know if anyone felt stabbing pains in their face and TMJ area, on the AN side, after treatment and how long it should last.  Thanks.

[nanramone]

Hi RAB...

I had GK on 5-18 - so it has been only a little more than 3 weeks.

The pin sites were extremely tender for the first week and a half...as you say, especially the ones in the back. The scabs seemed to come off at about 10 days, but yesterday I noticed there is yet another tiny scab forming on one front pin site, and I can feel a tiny bump.

I think puncture wounds typically heal slowly, no matter what the cause, so I'm not concerned.

I hope this is helpful.

Nancy

[nanramone]

oh also - I didn't experience any stabbing pain  - the only problems I have that are possibly related to facial nerve damage are an occasional burnt tongue feeling and I drool slightly at times - also, in the morning sometimes my left eye is either very dry or watering like crazy, but these problems existed before GK.

[Joey]

Hey RAB - hope this finds you doing better day by day.  It takes awhile before the pin sites heal - you may have sensations there for a few months even.  My head felt numb for the longest time, like an end table or something.  I will be 2 years out from GK in October, so it's all becomie a distant, hazy memory, which is ok.  But the pin sites did bug me for awhile, so be patient and gentle with them.  I also had lots of weird nerve pain, too, but things improved over the course of several months.  My advice is to rest alot, go for many walks and try to distract yourself with things you enjoy.  Time will pass and things will definitely improve. 

Take care and best of luck.  If you need anything, holler.  This is a good place to vent and ask questions.  ~~~ Joey

[RAB]

 Thanks to both of you for your input.  It's nice to have a place to go where people have been through the same thing.  Funny thing, today I had a pretty good day, exactly one week after GK.  I woke up with hardly any headache at all and face pain seems completly gone.  I was so excited!  I developed a dull headache toward the late afternoon, but not any worse than the ones I had pre-GK.  Maybe things are starting to turn around?  Pin sites are still sore though.  I actually did go for a walk today and had no problems at all.  I tried earlier in the week and found it more difficult.  I thought I pushed myself too hard.
  Nancy, I too, get that occasional burnt tongue feeling.  I had it before my diagnosis, along with a tingly lip, but never knew what it was.
  Oh, also, the side of my head itches and feels tender or irritated.

[rupert]

        Hi  RAB,      The pin sights in the back will always be more tender because there is more muscle and tissue there.    Mine took about two months
to be completely pain free.   It is a gradual process.   They will feel better as time goes on.   Then there will be a point where they are only tender if you
bump them or hit it with a comb.  Ouch,    I found Advil was all I needed.   
        I felt kind of out of it for the first week,  I am now four months out and as far as I can tell  AOK.  My Main problem,    I seemed to be tired all the time. 
This is much  improved now.
        One interesting thing.   Before I had the GK procedure I had been plagued with what I would call cramps,  or tightness in my face on the AN side.  This was constant and the only relief was facial massage.   I had to do this every day or the tightness would get so bad I would have a hard time eating and was very painful.   Since my procedure I have not had any facial tightness nor the need to do any facial massage.   That is a good thing,   but kind of strange that it would just disappear like that.

Bryan

[Sue]

If you want to read my story, click on the link below and you can read about my recovery from Gamma Knife.  My trigeminal nerve was involved and so I had a regular aurora borealis going on, or so it felt like.  The pin sites were tender for awhile and it did take a long while for things to settle down.

Sue in Vancouver, USA

[RAB]

Bryan I know what you mean about the tightness in your face.  I had that, too.  I still do, very slightly, but it is much better.  I have TMJ, so I wonder if that has anything to do with it.  I also had  tightness/stiffness/pain in my neck, which is also much better now.  Actually, I can't believe that I'm feeling so much better already.  I feel noticeable relief of most of my symptoms- only two weeks after treatment.  One week of bad headaches/face pain.  I guess that really is not bad at all-- IF that is the worst of it!  It is all very interesting.  Who knows what is going on in there?  No change in the tinnitus though, (maybe slightly louder) which is still annoying.

Sue, I will read your story.  I hope things are better for you now.

[Anthony 42]

RAB

I am new to this board. Was just diagnosed with AN 7 x5 x5 mm and met with Dr. Bigleow yesterday. Just wondering if you could tell me a little more about your experience at U of Penn. I am leaining towards the Gamma Knife radiation. How are your headaches?

Anthony

[RAB]

Anthony,

My headaches are all gone now and I feel great.      See my message to you about my UPENN experience.

Rosemary