Placing the Head Frame was Worst Experience Imagineable

[sacking]

2cm AN on left side. Kaiser Roseville, California. Dr. Sahrakar. Installing the metal frame was amazingly painful. I don't know why I didn't experience what everyone else here is talking about, but 4 shots of lidocaine then I had to stop and lay down and they gave me a shot of Morphine. But we weren't finished. I needed 4 more shots of lidocaine and the pain of screwing in the head frame was unbearable. That finished up about 8am.

Then the CT Scan then the waiting then the treatment. Got the head frame off about 1pm. They had to stitch up the holes in my forehead. I was in pain the whole time. Even taking the frame off hurt.
Today, the day after, my eyes are almost swollen shut (forzen peas on the eyes for 20min). Just had the wrap taken off my head and replaced and some antibiotics in the holes in front and back.

So do the frames come in different sizes? Are the screws different lengths? Why did I have such a terrible experience when others are saying it's a piece of cake?

I'm glad I had the procedure. But something was wrong with the way my procedure went and I wonder if anyone has any insight or similar experience.

Thanks
Sacking

[KJ]

Golly, Sacking, I didn't have that type of radiosurgery, but yours sounds miserable.  Mine was FSR over 26 days and I wore a plastic face mask to keep my head still, not the type with screws into my skull.  I didn't feel a thing, except for some vertigo and dizziness (which I am still experiencing). You poor bugger.  I feel really bad for you and I hope it goes better from here on out.
Kate

[gordy]

i had gama knife about 2 and a half years ago. i didnt have a problom with them placing the headframe on but did when they took it off. had alot of pain when they were unscrewing it. i yelled HEY YOUR TIGHTENING IT!!!!!!!!! but it was from the release of pressure. they gave me something that almost made me puke but that was the only discomfort i had. hope that tomarrow your feeling better.

[sacking]

I had the same experience when they were taking out the screws. Felt like he was tightening them.
Got some vicodin which I'm still taking. Lost of puffiness under my eyes. I have a friend who's a pharmacist who came by to apply
antiboitic ointmednt to places where screws were, since I can't see where the back screw holes are located. She said there was a lot
of draining going on back there.

I have read many good stories and understand that radiosurgery was the best way to go. Just don't understand why my experience with the
head frame was SO differrent from what others experineced.

Thanks for your quick follow-ups.

[sacking]

Thanks. It wasn't GK. Must've been CK.
I guess with FSR they use a mask as it's multiple short shots compared to one long shot of radiation.

Neither the CT Scan in the morning nor the CK later were big deals. The mask...they should use this at Gitmo.

I had the frame on from around 8am to past 1pm. I could barely eat my banana or have a sip of water.
The Morphine made me sick, which happened around 11am. I actually felt a little better after that.

I look forward to grilling the nurse and doctor as to why they think I had the experience I had.

Thanks again.

[gordy]

sacking i had my head frame on from about 7 a. m. til 2;30. p.m.. with me the gamma knife machine failed toward the end of treatment. they told me that they were calling a technicion to see if he can come and fix it. that never happened.no one ever came to fix the gamma knife machine. so i ended up staying in the head frame for about 4 extra hours before i said take this damn thing off. i could not go back to finish it up it had to be done that day. they claimed the treatment i recieved was sufficient. so then when my bill came  i told them why should i be billed for a treatment that wasnt completed? thet told me the doctors felt it was sufficent. so then if 7 shots were enough why did they want to give me 9? they felt my body needed extras radiation? got no answere no reprive just a bill that i had to pay. hope my story makes you feel a tad better knowing you arent the only one that things didnt go all that smooth with.

[Sheryl]

Sacking - so sorry for what you went through.  You did mention you weren't sure if it was GK or CK.  From what I understand they DO NOT screw the frame into your head for CK (a friend and also my husband had it done) but they do screw the frame in for GK.

Hope it is all going to be worth it with the cessation of growth of your tumor.
Sheryl

[sacking]

Kaiser says they used CK not GK. Took Benadryl to reduce the swelling and puffiness under my eyes (suggested by pharmacist friend). Will have to talk with nurse when they take the stiches out later this week. Just don't understand how my experience is so much different from everyone elses. These frames must come in different sizes, no?

Well it's behind me, and I'm glad of that. But if I was to go thru this again, I'd insist on a general to put me out while they attach the frame. I had a general for the endoscopy I had earlier this year.

[windy]

Sacking, I am truly sorry for your bad experience.  A headframe screwed into your skull is no fun!  I, too, found the headframe very unpleasant.  The placement of my frame was no piece of cake, as well.  I was quite sedated prior to the placement and still could barely stand the frame through the sedation.  They placed some extra shots into my head putting on the frame.  Then, when taking the frame off, I bled alot and the nurse said I might need stitches.  I think they later decide not to stitch.  Next, I passed out and they hospitalized me overnight.  I have two scars left where the headframe was placed now.  Also, I had swelling for a while.

It will get better.  The swelling will go away and eventually the memory of the day will be distant for you.  Just keep that in mind!!  Take care Sacking!!!

[Sue]

Wow, I am so sorry you had such a time with the headframe.  I had no such problems.  I also had the little white pill beforehand, though.  It certainly did numb my senses.  Plus the cream, then the shots, and then I only felt a little discomfort on one pin, that was tightened really hard.  Mostly, I didn't feel much of anything, except pressure.  I am so, so, so, sorry that you had a major problem with that, because it certainly shouldn't have been that bad.  I have no idea why your tolerance level was so low, or their procedure was so bad, whichever it was.  That's terrible.

Hugs and more hugs,

Sue in Vancouver, USA

[sacking]

I don't know if it's Kaiser. It's been 5 days and I'm doing much better. Tired some. Went to work yesterday, but today I was too tired to get up in the morning.

Thank you all for your support. I have stiches in my forehead that will be removed next week. The heavy, full feeling I was having in my head is gone, which is real nice.

I'm glad my 2cm tumor was radiated. Surgery seems pretty intense.

[sgerrard]

I'm glad my 2cm tumor was radiated. Surgery seems pretty intense.

I'd have to say that your radiation treatment was pretty intense too. Yow. Maybe you have a hard head and that made putting the screws in more difficult. If a patient is having that much difficulty, they should just bring in the general anesthesia and let you sleep through it.

Oh well, it is history now. Hopefully you continue to feel better each day, and that AN had better be good and dead!

Welcome to the forum.

Steve

[sacking]

Today not as good as yesterday. That fullness, dizzy feeling in head returned. Took a motrin for the pain. Certainly quite tired.

Oh well. Just want the damn thing dead. Yeah, next time, give me some general anesthesia and be done with it. But then, hopefully, there won't be a next time.

[GM]

I remember when they installed the frame on me.  They had me sitting up and gave me some drugs that made me "nod off" and then I woke up and the frame was on...I felt like a Power Ranger LOL !!  They had to tighten it a bit because it was loose on one screw.  That was a weird feeling, but it didn't hurt at all.  I will admit I half expected to hear a "crack" but I never did.   

Six years later...I can feel small remnants of indentations in my skull where the pins were.  They aren't actually screws....they're pins.  Sorry that you had such an experience, my guess is that your anaesthesiologist wasn't doing a great job keeping you slightly under.

[sacking]

Sorry that you had such an experience, my guess is that your anaesthesiologist wasn't doing a great job keeping you slightly under

No anaestesiologist. Only Ativan.

My suggestion to Kaiser will be that in the preparation for the procedure, discuss ones pain tolerance. And be prepared with other protocols if the patient experiences severe pain.

I think I have a slight dizziness. Nothing serious, just a sense of dizzy mainly in my head. Maybe it will go away in a few weeks. Stitches taken out tomorrow.