Author Topic: headframe installation  (Read 8771 times)

v2win

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headframe installation
« on: February 18, 2015, 10:37:58 am »
   I was treated two days ago for acoustic neuroma, using gamma knife. I must say it was probably the best medical procedure I have ever had. My nurses, and doctors were pleasant, kind, and understanding. The only area I see for improvement was during the headframe installation. I understand that the facility I went to usually gives patients a small dose of phentenayl, in addition to the numbing injections. I am unable to take phentenayl, so we proceeded without it. As the frame was tightened, it felt as if it would be impossible to take the tightness for 2-3 hours. This caused me to have a small, short panic attack, until I felt that extreme tightness leave. I wish they would've explained that the tight feeling would only last a very short time. My treatment went great and I couldn't be happier, I have wondered if anyone else felt this way during headframe installation?

arizonajack

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Re: headframe installation
« Reply #1 on: February 18, 2015, 03:33:53 pm »
I have wondered if anyone else felt this way during headframe installation?

Not me. Whatever they gave me put me to sleep and when I awoke 20 minutes later it was done.

I'm guessing that anybody who stays awake during the headframe installation probably feels like a victim of the Spanish Inquisition.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ANGuy

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Re: headframe installation
« Reply #2 on: February 18, 2015, 04:01:14 pm »
If you could have taken diazepam or lorazepam, they should have offered it to you.  It's amazing how much you don't care about anything after you take a few milligrams of that stuff.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Susan59

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Re: headframe installation
« Reply #3 on: February 18, 2015, 06:25:39 pm »

I had no problem with the headframe.  They gave me some "happy juice" in my IV and I didn't feel a thing.

NYLady

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Re: headframe installation
« Reply #4 on: February 18, 2015, 06:34:32 pm »
So sorry you had such a difficult experience.  I had my procedure at NYU and they were wonderful.  First a "lollipop" and then some happy juice in IV.  The nurse was asking me to read something and said "how are ya feeling?"  I said fine.  He asked me to sign something and I could not even write.  By the time the surgeon came in to install the headframe, I think they could have pulled every hair out of my head and I would have just smiled and said "thanks".  Really, in a few minutes it was over and there was absolutely no discomfort.  Just a pin prick on the first screw or whatever they use.  Taking it off was the same.  Just loopy for awhile and had to wait while that passed and then off I went.  Amazing team from start to finish...all made sure I was comfortable.  Cannot imagine why they did not offer you something to make it easier for you.  I have said if the installation of the headframe is a reason for someone declining Gamma Knife, it really should not be.  Feel better.....

Best,
NYL

rupert

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Re: headframe installation
« Reply #5 on: February 19, 2015, 02:55:55 pm »
I was fully awake during my head frame installation.  It did not hurt at all but feels very weird of course.  Having an apparatus screwed into your skull is not something people usually  experience so it was different.  Once attached,  I relate it to being a deer with antlers. LOL.  ;D

   :o  So as not to scare any newbies,  I will add that it is not actually screwed to your skull.  As the screws on the head frame are turned it pushes a tiny pin into the bone and that's what holds it still.

arizonajack

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Re: headframe installation
« Reply #6 on: February 20, 2015, 02:41:46 pm »

 :o  So as not to scare any newbies,  I will add that it is not actually screwed to your skull.  As the screws on the head frame are turned it pushes a tiny pin into the bone and that's what holds it still.

Right.

Looks like this:

http://img3.wikia.nocookie.net/__cb20130131090755/supernatural/images/8/86/SPN_1010.jpg

 ;D
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ANGuy

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Re: headframe installation
« Reply #7 on: February 20, 2015, 06:08:27 pm »
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

SueLL

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Re: headframe installation
« Reply #8 on: February 21, 2015, 01:34:00 pm »
The Addams Family photo is hilarious - thank you for the laugh!

When I had GK at UPMC, Dr. Lunsford wanted to attack the AN from two different directions, so after the first dose of radiation the doctors removed and reset the headframe.  Of course I was dazed and only recall the doctors calling out coordinates and working on the headframe.  They did not have to reinsert any pins.  I wondered how common this was - have others had their headframes changed?
Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

Echo

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Re: headframe installation
« Reply #9 on: February 21, 2015, 06:56:16 pm »
Love the Adams Family reference, absolutely hilarious.

I was given small needles first to freeze the area where the frame would be attached. I was awake while the frame was put on and other than taking a few minutes to adjust to the pressure feeling, I felt nothing else.  My only complaint was the frame was put on at 6:00 a.m., and I was not given my treatment till 1:30 p.m.!!! Far to long to have to wait with the frame on.  Once the frame came off, within seconds I had the absolute worst headache of my entire life.  The good news is, the nurses were fantastic and I was given some awesome drugs immediately, for the pain and nausea.  I left the hospital within an hour completely pain free.

Cathie

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Boise Jim

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Re: headframe installation
« Reply #10 on: February 23, 2015, 04:16:36 pm »
Just had mine done Friday, and I was awake for the whole procedure.  Had my frame on for six hours because they wanted to really make sure of the settings because mine is relatively small.  The worst part for me was the shots they gave me right before the installation because it seems my 'happy juice' didn't work too well, so that hurt. :(  Still have the holes in my head and they hurt a little bit, but only when I touch them.
I sure hope this one dose did the trick.

ms444

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Re: headframe installation
« Reply #11 on: February 26, 2015, 06:58:23 am »

how big are the headframe screws that actually pierce the skin?   does it leave a scar?

NYLady

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Re: headframe installation
« Reply #12 on: February 26, 2015, 08:39:37 am »
Hello again MS444...

Really, I think these should be described more like "pins" rather than screws.  They are meant to hold the very light weight frame in place for a short time, which they do to insure accuracy in targeting the treatment.  I experienced no scars or hair loss, just tiny bumps for a few days where they were placed.  Only discomfort was a little soreness if I touched them (which you do find yourself doing from time to time).  Still could not believe I was so scared before and when it was done, I was amazed how smoothly it went. 

Best.
NYL

Nank

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Re: headframe installation
« Reply #13 on: March 07, 2015, 03:22:33 pm »
The head frame was the worst part for me.  I did have a scar for quite a while, but really can't see it now, almost two years later.
That Addams Family picture is hilarious.  I should show that to my family to give them an idea of what it felt like for me!
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13