Head frame questions

[Alison]

Hi,
I'm awaiting Linac SRS (hopefully!) and they use a headframe at my centre in the UK. I've a couple of questions about what to expect with the frame if anyone can answer please.

The people who've had the headframe here in the UK that I've talked to, have all complained of scalp numbness. One has numbness 9 weeks post SRS over the top of his head. Has anyone experienced this length of numbness or is it something to to do with treatment technique in the UK?

Secondly, do the pin sites at the rear of the head get irritated if when you wash your hair and use shampoo? I wondered if you have to avoid getting wet to help them heal. I heal slowly and scar badly (I have kelloid scars from previous unrelated surgeries) and although small as the pin sites are supposed to be, I wonder if I'll be left with raised bumps on my forehead. Not much to complain about I know, compared to the other possible side effects and compared to surgery, but just wondered if I should grow a fringe! 

Thanks,

Alison

[Bonnie B.]

I had a head frame when I had GK earlier this year.  My scalp was numb just for a day or so.  As for the pin sites, my doctor advised that I use baby shampoo for a few days.  She actually advised washing my hair the day after GK.   I have had no problems.

I hope this helps and good luck.

Bonnie

[Alison]

Thanks Bonnie,

that is very reassuring and thanks for the advice about washing hair. I wonder why people seem to get prolonged numbness in the UK though. Maybe we have a different type of frame?

I hope you continue to recover well,
best wishes,

 Alison

[arizonajack]

I wonder why people seem to get prolonged numbness in the UK though.

Maybe it's because people in the UK drive on the wrong side of the road. 

[mattsmum]

hi alison - i think you have just heard from those of us in uk who had numbness! my oncologist told me it was only a small number of patients who get it for more than a few days. i can't see how technique could be the issue - it is just bad luck if a cutaneous nerve is hit with the local or the pin.
i was told to use baby shampoo too - and to wash my hair when i wanted to.
and i was amazed how quickly the  pin sites at the front healed. i can only see where they were now if i look really hard (and i know where they were!). my son was rather alarmed the first evening but they did shrink very quickly.
best wishes,
vikki

[Alison]

Hi,

thanks for the information. Vikki, yes it seems almost everyone I've heard from in the UK who had the headframe had prolonged numbness and they all had Linac SRS so I am expecting it. I'm still awaiting news of when I may get my apt, but the left half my head, AN side, feels oddly numb most of the time already! Hope you are well.

Alison

[mattsmum]

i hope you have news soon,
vikki

[Sue]

When I had my GK, I was told that the numbness was due to the numbing agent that they inject into the scalp before putting on the head frame.  It sort of moves around under the skin and I had all four areas that were numb for quite awhile.  I had no scaring from the pins, but I had an indentation that caused me some concern for a few weeks as they really screwed it on tight.  It, thankfully, went away.  Some fun, huh?

[Alison]

Hi Sue,

thanks for your reply. Interesting to think it could be the injections rather than the pins that cause the extended numbness. I read your blog and it rang a few bells. I had some ear blockage/fullness 3 years ago but it went away soon after, until June this year when I developed my balance problems, ( feel drunk when walking), although tinnitus and an odd "numb type" head sensation and headaches are increasing now.

Sorry to hear you have been left with some numbness. I hope you continue to recover.

Regards, Alison.

[cindyjarrett]

Alison,

I had gamma knife at the University of Virginia on October 12.  The night before I was given a special antiseptic cleaning shampoo and told to use it that night, the next morning, and the morning after the procedure.  After that I could go back to using my regular shampoo and conditioner. 

I asked right after the procedure about how long my head would be numb, and they said it could take up to two weeks for the numbness to go away.  Actually, I never even noticed my head being numb feeling.  My pin sights were very small and went away within ten days.  You now, almost three weeks out, cannot even notice where the pins were placed. 

I feel great.  I have had one headache that went away with Advil.  I am working, walking three miles each day, and doing aerobics a couple of times a week.  I wish you the best of luck with your procedure.

Cindy

[Alison]

Hi Cindy,

thanks for the information. I don't think they offer us an antiseptic shampoo here in the UK, unfortunately. I'm really glad you are continuing to recover well since your treatment this October. Long may it continue!

Best wishes, Alison.

[denisecarey]

I had Gamma Knife Surgery on 5th December at sheffield and I tolerated the head frame very well, it feels absolutely fine once on, numbness has now gone only lasted till friday really, pin sites look amazing, was told not to wash my hair for 3 days and used my normal shampoo. The only thing I have experienced since is tiredness (to the point of exhaustion).Good luck with your procedure. Denise

[Alison]

Hi Denise,

thanks for the info, I hope you are feeling less exhausted today. When you say the pin sites look amazing, do you mean amazing good, or amazing bad?!

Are you on the UK facebook site?

Alisonx

[Sue]

Denise, the exhaustion is quite common.  I hope you get lots of rest.  The brain didn't much like getting nuked, even if it was focused on the AN.  It's something that will get better.

[arizonajack]

I had Gamma Knife yesterday, 1/22/13. My scalp was anesthetized and the head frame put on at about 9:30 AM. GK took place about Noon and the head frame removed about  12:45 PM.

The nurse put bandaids on the two front pinholes but not on the back because of hair.

I was told I could shampoo normally today.

The scalp numbness cleared up by last nite and the oozing cleared up by this morning.

Tonite I have very slight sensitivity at the pin sites and very small bumps that are barely visible.

I was tired after the treatment but I don't think I was tired from the treatment. I think I was tired because I was up at 4 AM. Otherwise I felt fine and resumed normal activities today.