Post-radiation headaches

[Kilroy1976]

Good morning all. I had radiosurgery (linac) yesterday. I felt more or less fine for several hours afterwards, and was even able to drive the 150 miles home from the hospital. I took a nap when I got home, and woke up with a pounding headache. It never went away yesterday, and I still have it this morning. I suppose it could be caused by the holes from the head-frame, but those don't hurt very much and the headache isn't localized around the holes. Did anyone have a similar experience, an idea about what is causing it, or know if I should be concerned? Thanks much. -K

[jamie]

I had a pretty wicked headache after my radiosurgery, I just took an ibuprofen 3 x day and that controlled it fine. It can be caused by edema (swelling) around the tumor and may be off and on for a couple weeks to months, but they do go away. If ibuprofen doesn't work, ask your doctor, they may put you on a course of steroids. Good luck.

[Kilroy1976]

As usual, Jamie has the answers. The headache, at least the fierce part of it, went away in just over a day. It was replaced with tinnitus, which wasn't there before the radiosurgery. I'm fatigued most of the time, have balance issues and I have a strange dull ache that seems to stretch from my lower throat on the AN side, up through my teeth and ear, and ends at my eye. All of that is pretty mild compared to the headache, so all in all I'm fairly pleased. I just keep telling myself that if I had opted for surgery, I'd still be annihilated right 'bout now.

[tgentile]

Remember, everyone has a different recovery. Your statement "... if I had opted for surgery, I'd still be annihilated right 'bout now." has no basis. Unless you have gone through this before, no one knows exactly how they will react until its done. (If you have gone through this before, sorry that you've had to do it twice.)

We need to be careful about fact versus fiction in all of our posts. Too many newly diagnosed folks read these posts. They are scared to death. You can cloud an important life decision based on misleading statements.

[jamie]

Glad to hear the severe headache is gone, the dull aches should also subside over the next few weeks to months, mine did and I very often forget I even had an "tumor issue" at all.

I agree tgentile, misleading statements should be avoided in regards to all options, but I think Kilroy just meant to say he would be enduring recovery from an invasive surgical procedure. There is, in general, a big difference in recovery between the two procedures I'm sure you would agree, although "annihilated" is a rather strong word. 

[tgentile]

Recovery from surgery or any non-invasive procedure is completely different in everyone. All I'm saying is that folks should present facts. Sorry if I came across strong, but the comment really irked me. No one wants this to happen to them. All I ask is that we show a little more respect for the individual choices we all make and that we do not color our comments with what we think might have happened had we chosen a different route.

I totally disagree that there is a big difference with recovery between the two procedures. It all depends on the situation.

Remember, the recently diagnosed are reading this too. They are confused and looking for help.

[Kilroy1976]

I have no facts to offer whatsoever regarding neurosurgery or the recovery therefrom. I compare my post-radiation trials to my, perhaps flawed, perception of what my recovery from micro-surgery would or could have been because it helps me to cope with my aches and pains. Radiosurgery is not an easy row to hoe by any means, but I strongly feel that I made the correct decision.

That said, I certainly hope that nobody relies on anything that I write here to make such a life-altering decision. I am a newbie; I haven't even been hazed yet. My training is in law, not medicine, and definitely not the specialized type of medicine that pertains to ANs. Please accept my sincerest apology for my ignorant statements.

[jamie]

I totally disagree that there is a big difference with recovery between the two procedures. It all depends on the situation.

Has there ever been any situations to your knowledge in which a microsurgery patient was not placed in ICU for the night, followed by at least a couple days in the hospital? After my CK treatments I walked back to work and finished my shifts, then drove home. Can you think of a situation in which a microsurgery patient was brought out of anesthesia to get up and return to work? There is clearly a huge difference in recovery between the two procedures, to lead a newly diagnosed patient to believe otherwise would be dishonest. Both procedures have pros and cons, and the newly diagnosed deserve a clear understanding of both, in my opinion.

[tgentile]

I was home in 2 and a half days after a 10 hour surgery. I was walking up and down stairs the day after surgery.  My hearing was preserved. I have had no headaches. I have no facial problems. I started working a week later, albeit from home as my job affords me this luxury. So, in my case, surgery was not that bad at all. After reading all of the posts here prior to surgery I thought my life was over. It's not.

I agree that we all need to be honest. That is the whole reason for my initial reply to the comment "... if I had opted for surgery, I'd still be annihilated right 'bout now." That is not serving anyone.

[jamie]

I agree, there's no way of telling how somebody will react to either procedure until it's done. My point was just that, in general, radiosurgery offers expedited recovery. That's one of it's pros. I'm glad your recovery was easy, but as you said, after reading most of the posts after surgery one can conclude that either that isn't the norm, or most of those who have quick and easy recoveries just don't bother posting, if that's the case it's unfortunate because it would be helpful to many to hear those entirely positive stories. Although I think my point was valid even in your case, as you were in the hospital for a couple days. Hopefully there are many more surgery patients who bounce back like you though, it gives those who choose the surgery option hope. Was your AN fairly small?   

[Kilroy1976]

Tgentile, I apologized for the "annihilated" comment...

I am very happy that your operation was so successful, and that you were back on your feet so quickly. The surgeon that would have performed my operation, had I opted for that route, flat-out told me that I would be hospitalized for at least five days. I don't know if that's just this hospital's way of doing things, or a recovery period specific to my AN or what. I may not be "annihilated right 'bout now," but that timeline means that I would be checking out of the hospital today.

With radiosurgery I ate lunch at Chili's with my family an hour afterwards. I drove myself home and went to work two days last week. I finished my Christmas shopping this weekend. I even found time to spout some baseless drivel on this board. It's not all fun and games to be sure, but the effects of the radiation are manageable and it makes me happier to manage them at home. The worst part for me is having to wait for signs of real damage and to find out if they "got it."

[Windsong]

I am reminded of my study of existential phonomenolgy.....

Maybe a good example here would be something to do with headaches......

So one day i walk into work and someone asks me how I am? I say oh fine but I have this crappy headache... (sorry about using headache as an example Kilroy but it's the easiest as more have  had at least one little headache sometime in their lives).... i hear , oh that's no fun, and  i say yeah, and we both commiserate with each other as  we both know what a headache feels like. But my point is that that other person has absolutely no idea what MY  headache feels like.....we simply have some common ground here... we both have had headaches so have some comprehension of what it is like......but do i know what that other perons was like ? well no... nor does that other person  really know what kind i have today....


Now here's an example on the experience of time.....

two little kids are sitting on the front steps of a house... one came out after spending some time with mom in the kitchen watching her can jars and jars of fruit...let's call her A..... the other came out after watching a cartoon in an air conditioned house ....let's call her B....... it is about 95 degrees that day.. so they both set off for the conrer store for an icecream cone.....so who finds the walk the longest? which one finds the walk seeming like 5 min and which one finds it feeling like 20 minutes?

A or B?

think about it....


comparing ck to surgery is like potaoes to raisins... which is best?.....great for discussion but maybe the one doing the eating needs the nutrients of one  such as the potato and the other needs the raisin for the best result... and so you go buy what you need.....


may all of you be cured and happy with your choice.

[Kilroy1976]

I get it!

One person (A) drinks good stiff eggnog, one person (B) drinks rum and hot cider and one person (B) drinks brandy and hot tea. (I highly recommend all three.) They all get nice and warm and full of holiday cheer even though they all got there in a different way!

[jamie]

I believe if you drink all three, your gonna definitely be "annihilated". And the next day you will have one of those crappy headaches Windsong was referring to, and no desire to try and figure out if somebody else's headache feels the same as yours. 

[Larry]

I had a 6 hour op 3 years ago (middle fossa) and have had debilitating headaches since. Most of the time its manageable, but all too frequently, the pain is unbelievable. I have tried drugs, steroids, accupuncture all to no avail. Neurontin does seem to help a bit. I spent 24 hours in ICU and it was horrible. Pain running down my body, nausea and not being able to sleep or move too freely was an experience that i wouldn't want anyone to go through. lucily, i don't have any facial nerve issues.
I was walking around for a couple of days after that and then home but was pretty tired and couldn't walk too far even though I wanted to.
I was back at ork in 4 weeks after my op which was really tough going. Now havinmg re-growth and knowing what I do now thanks to this message board, when i treat my re-growth it will certainly not be via surgery. i would not want to go through that again.

The important issue here is that everyone does have a different scenario, there are a number of factors that influence the recovery including the surgical procedure itself 9cutting of muscle and the way the scalp is put back etc.


Larry