Radiosurgery procedure

[rmaddal]

Hey all-I just wanted everyone to know that I had my radiosurgery two days ago at the University of Colorado Medical Center with the Novalis system, (1.4cm AN) and I'm not exaggerating when I saw this was probably one of the easiest medical procedures I have ever had, and I've had my share. For the one day treatment they use the headframe, which I know people are very apprehensive about, but let me say that this was no big deal. I've had enough needles stuck in me in my life so I'm pretty used to them, so when I was given the local anesthetic shots for where the screws were to go, the discomfort was pretty minor, and then the entire part of my skull from the mid-forehead up and around got pretty numb on top. When they tightened the frame, the most disconcerting thing was when they torqued the screws down, which kind of echoed through the frame, but there was absolutely no pain. The procedure was just like getting an x-ray, no sensation of anything at all. Being bolted to the table was easy, and that was the other part I was worried about. I was relaxed and pain free but still alert, and when the parts came where one might be claustrophoic I just closed my eyes. It took about 25-30 minutes, and I walked back to the holding area, changed and put my shirt back on, got my prednisone prescription from the doc, walked out and went home. The head numbness was kind of weird, but had worn off by the next morning. I slept great the first night, although I think the prednisone kept me a little awake last night, one of the unfortunate side effects. The doc warned me about fatigue which may kick in in about 2-4 weeks, but if you've read about this in the forums the secret is to keep active. Yoga seems to be getting raves as a fatigue fighter also. I don't know what's going to happen down the road, but for those who are worried about the radiation procedure, and I can't speak for GK or CK, but in all honesty, this was NOTHING! -Bob

[debora]

Bob,

You are absolutely right, the halo being screwed to your head shouldn't hurt at all.  My word of advice to anyone who has to have this done is do not let them screw it into your head while you can still feel it.  My Neurosurgeon must have been in a hurry because 3 times I told him the pain was terrible in the front right part of my skull, he then went and twisted the pins in the back which hurt but not like the one in the front. He kept going back to tighten the front one, after I told him the 3rd time and tears are running down my face he still went ahead and finished. I figured he was the doctor and maybe that was all the better the drug was going to work.  When he was done I had to put my head between my legs because I thought I was going to pass out.  A few minutes later they asked how I was doing and believe it or not I had no PAIN, Sorry but it makes me so angry when I realized that they only had to wait another few minutes and I wouldn't have had to feel a thing.  Please anyone who has to go through this know that you don't and shouldn't feel it being screwed into your skull.  The rest of the procedure wasn't painful and went pretty quickly.  So you still have indents in your head from the pins?  I don't mind, it is a reminder of what I have gone through and I feel pretty grateful to just be here.  Merry Christmas to all.

Deb

[rmaddal]

Debora-I am so sorry you had to go through that part. With the first screw my doctor started tightening down, I had the last inklings of a little pain, but it went away fast. I think the thing we should all bring away from this is that we, the patients, are just as involved in the treatment as the doctors, and if we think something is not going right, we have to SPEAK UP! Everybody who has been involved in my treatment was great, so I don't have any specific complaints, but always remember to ask questions about anything regarding a procedure you are having, so that you know exactly what is going on. My best to all who are having radiation or surgery tomorrow. I will be thinking good thoughts about you all. -Bob

[shoegirl]

Bob,

Glad to hear you are doing well after your radiosurgery.  Have you had any side effects?  I hope you continue to feel well and that your followup MRI shows positive results! 

Thanks for sharing your experience.  I am having CK tomorrow and reading your thread helps me feel better - less anxious - even though our radiosurgery is alittle different it still helps ease my mind.

I hope more people will share their experience with radiation.  It would really help those who are still going through the decision making process and those who are in the middle of treatment.

Happy Holidays and Best Wishes!
Suzanne

[rmaddal]

The only side effects are probably in my mind, so far. I thought maybe I was starting to feel the fatigue, but maybe was just being lazy. I was (am) having trouble falling asleep with the prednisone but when I finally get to sleep I get caught up, maybe sleeping until 11am or so, which I haven't done for years. But I have only got 2 more days weaning off and then we'll see,  Maybe that's when the tumor sees its chance and a little swelling brings on the fatigue. But as I said earlier, the solution to fatigue is to try to stay active so I exercised hard this weekend and then rode my bike into work yesterday (21 miles roundtrip in Colorado in December is a thrill. It was 25F when I started out!!) The only other symptom that I may be experiencing is a little balance issue, very minor, maybe I'm just being a klutz, but I've had a couple of people steady me the last week. If this is all it can throw at me, I laugh in its face. I'm just hoping it doesn't get the last laugh! Suzanne, I hope your CK went well yesterday. I look forward to what you have to say about your experiences. -Bob

[debora]

Bob, 

Wow it hardly sounds like you are being lazy, good for you. I have the feeling that even if you get a few side effects you won't let it stop you.  You are an inspiration.    Deb