Author Topic: what should I expect now?  (Read 2293 times)

stevenpuckett

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what should I expect now?
« on: March 25, 2010, 06:52:05 pm »
Hello everyone.
 I had my stereotactic radiation surgery mar 19 at Andersen cancer inst at Memorial hosp in Sav Ga. Other than the horrific headache I had after having the halo removed I have not had any bad pain just some soreness where those hellish pins were screwed into my head for 5 hrs. By sat afternoon though my right eye swelled shut and there was swelling in the forehead and rt cheek. The Doc put me on a cortosteroid for several days that I took every 8 hrs and finished the last dose early wed morn and I haven't taken any of that awful lortab 500 since sat morn(yuck).
My energy is slowly coming back but I tire easily and have taken 2 naps a day until today which was only one for about 2 hrs. The Dotor made it sound like I would be back on my feet this week , but Im not going to work like this! I am a Marine mechanic and I am on my feet,in n out of boats,up and down ladders and around docks.Im hoping by next Mon that I will be able to be back at work. Im not used to sitting around and doing little which is driving me bonkers
My head feels like its the size of a beach ball and when I walk I feel like I want to veer to the right but I think its just due to the swelling of the area around my eye. I have also noticed that my scalp is sore in several places. My wife says that my appearance is looking better.
My question now is what should I expect in the few weeks or months ? Id like to hear from some of you that have gone through the same thing that I have. My AN was on my left side and around 12mm in size.
thanks
 Steve

leapyrtwins

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Re: what should I expect now?
« Reply #1 on: March 25, 2010, 07:59:53 pm »
Hi, Steve and welcome to the Forum  ;D

I'm not someone who can reasonably answer your question - I chose surgery, myself - and although I could probably make something up, I'll let someone who had radiation respond.

I do remember that when my doc & I talked radiation, he said it could take as long as 12-18 months to encounter side-effects. 

Everyone's AN Journey is somewhat unique though; sometimes you just have to take it as it comes.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: what should I expect now?
« Reply #2 on: March 25, 2010, 10:50:02 pm »
So you are coming up on one whole week post treatment?  :D

It is still early. I think much of what you have experienced is due to the halo clamp business; it sounds like you had a reaction to that. That should clear up shortly.

As for actual radiation induced swelling, I had mine at 3 months, and it lasted just a couple of weeks; some get it at 6 months or later, and sometimes it can last for several months. There is no good way to predict it, but your AN is on the small side, and usually that means fewer, shorter, and milder swelling events. Keep some Ibuprofen and Aleve handy, and you will do okay.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

stevenpuckett

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Re: what should I expect now?
« Reply #3 on: March 26, 2010, 05:00:06 am »
Thanks for the info.
Yeah that halo was pretty brutal especially with those pointy screw pins at 33 inch lbs and being a mechanic for over 20 yrs I know how much torque that really is.
I made the best of it though! Once my crown was put on I declared myself king of MUMC(memorial univ med center) and as I was rolled around the Hosp I would wave to people with that queen elizabeth wave and refer to them as my royal subjects. Im sure the Valium and lortabs had something to do with that lol  ;D

ppearl214

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Re: what should I expect now?
« Reply #4 on: March 26, 2010, 05:15:30 am »
Hi SteveP and welcome.  SteveG is correct and congrats on being a "toastie postie" (radiated post-treatment).

I had a different form of radiation (Cyberknife) 4 years ago..... and in line with what SteveG noted...... I kept the anti-inflammatories (ie: Ibuprofen, etc) nearby as well.  Fatigue is a common factor with all brain tumor patients, regardless of treatment option and note that I also ran into it within the first year post-radiation.  I did have some temp ear fullness feeling and some headaches as well.  Most of my issues occurred within the first 6-9 mos post radiation.... subsided substantially after that.  We know that things can crop up even further down the road....."individual results may vary", so some experience issues and some don't.  Please keep your radiation team (esp the neuro-onc and radio-onc) abreast of any issues that seem to linger that may crop up so they can properly guide you to keep things under control.

Again, good to have you here.... we're here to help... and wellness wishes to you for the weeks and months ahead.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"