Having radiation on Thurs.....questions

Ok, I’m finally having my stereotactic radiation on Thursday. I feel great, I have never had a bleed. My fear is that I will have side effects after the radiation! I feel good and am pretty much symptomless. Are there side effects I should be concerned about? I had two embolizations and only had a little head pain the first week after the procedure and then after that felt great! The only symptom I get is the heart beating sound in my left ear on occasion when it’s very quiet. Other then that I cannot complain. I almost considered just leaving the AVM alone and not doing anything because the radiation scares me. What do you think?

Just had the stereotactic two weeks ago. I was surprised how fast it went…from the time I walked in until the time I left … only 2 hours and I think only 1 hour was even on the table. Got up off that table feeling the same as I did when I went in. It feels like they are taking x-rays, although we know that is not what is happening. Also if you get the opportunity to have the stereotactic…well I would go for it. And the good news is, you won’t feel a thing except for your mask of course.

Had my head cut open 24 years ago, and now I am doing stereo. Trust me, I would muchhhhhhh rather do the stereo. Even more good news…Stereo does not cost thousands upon thousands and then add a few more thousand (and that was 24 years ago)…and a 3 week stay in the hospital.

I say go for it, keep on smiling and never let it slow you down unless the doctor tells you to slow down. Live life to the max, believe in yourself and stay positive. That is what I have always done. I even told my surgeon (24 yrs ago) “WATCH ME. I WILL WALK OUT OF HERE”. And guess what, I did just that :slight_smile: Wishing you the best of the best.

A very knowlegable,natural doctor,Dr. Mercola/Dr.Whitaker, I highly recommend them. Good luck.

Chari’s side effects were minor. Biggest issue was she lost a little hair at the target sites (it grew back). Required either a hat or a comb-over for a while. Her hair dresser took care of it for her.

I think the worry over the side effects should be much less than the worry of doing nothing. You look too young in the pic not to have this fixed if it is fixable.

Best wishes,
Ron, KS

Thank you Ron. I’m actually 39, will be 40 in January. :slight_smile:
I have three children so yes I do want to be here a long time to see them grow up. My Doctor said that leaving it alone posed a greater risk of having a stroke. The thing I fear is what if some of my normal brain tissue surrounding the avm gets some of the radiation? I was told it could cause me to have a stroke. So I guess either way…leaving it alone or getting radiation my risk is still pretty much the same. Then it’s wait and see for 3 years. My Doc said surgery was out of the question, it was too risky for me.

Rachel

Ron, KS said:

Chari’s side effects were minor. Biggest issue was she lost a little hair at the target sites (it grew back). Required either a hat or a comb-over for a while. Her hair dresser took care of it for her.

I think the worry over the side effects should be much less than the worry of doing nothing. You look too young in the pic not to have this fixed if it is fixable.

Best wishes,
Ron, KS

HHHHHHHHHMMMMMMMMMMMMMMMMMM,

Chari’s AVM showed up about age 40 also.

Ron, KS

Rachel,

Please let me know how the gamma knife goes as I also am trying make the same decision. I have never had a bleed but a few minor symptoms led me to finding this after consulting with neurosurgeon. Mine is in left frontal parietal area near motor strip. I wish you the very best. I am 44 so I was also told because of my age it would be better to treat this.

I think everyone will look at this differently but my son had Gamma a year ago. Our doctors really didn’t consider “doing nothing” an option although, I guess, in truth it was. But after all the reading I did, ‘doing nothing’ certainly was not the option I would have ever chosen for him and he could not have lived with that either. So we chose Gamma over surgery.

My feeling is that in doing Gamma, we have taken a strong step forward to get him AVM free. We are closer to that goal now than we were a year ago and that feels really good and as each year passes, we get closer. Yes, he has side effects but we are dealing with those one day at a time but we remain strong in our decision. Whatever happens in the future, we will deal with that too.

I really believe that you have to commit to your decision 100%. You have to commit that you will NEVER look back and say that you shouldn’t have done it or that it wasn’t the right decision. You have made this decision right now for many reasons- most importantly, you are fighting for your life and to be here for your kids and you have to remind yourself of that every day.

Thank God that you even have the option for having Gamma and go forward strong and committed, Rachel. You just have to be so tough when you are dealing with this condition and I know you have it in you to get thru this. Show your kids that you are one tough Mama!

Hi there, I am also wondering about side affects from gamma, can you tell me what the side affects are and what area the avm is in?

Joy said:

I think everyone will look at this differently but my son had Gamma a year ago. Our doctors really didn’t consider “doing nothing” an option although, I guess, in truth it was. But after all the reading I did, ‘doing nothing’ certainly was not the option I would have ever chosen for him and he could not have lived with that either. So we chose Gamma over surgery.

My feeling is that in doing Gamma, we have taken a strong step forward to get him AVM free. We are closer to that goal now than we were a year ago and that feels really good and as each year passes, we get closer. Yes, he has side effects but we are dealing with those one day at a time but we remain strong in our decision. Whatever happens in the future, we will deal with that too.

I really believe that you have to commit to your decision 100%. You have to commit that you will NEVER look back and say that you shouldn’t have done it or that it wasn’t the right decision. You have made this decision right now for many reasons- most importantly, you are fighting for your life and to be here for your kids and you have to remind yourself of that every day.

Thank God that you even have the option for having Gamma and go forward strong and committed, Rachel. You just have to be so tough when you are dealing with this condition and I know you have it in you to get thru this. Show your kids that you are one tough Mama!

One thing to consider also is that over time, medical advances happen.

When Chari’s AVM showed up about 1991, she was told “Unless you are bleeding, we won’t operate cuz the potential for deficits are too great. If you are bleeding, well, then there’s nothing to lose.”

At the time, Proton Beam Radiation was the only viable option for her for treatment. So that’s what she did. Did it keep her from a bleed between then and now? Don’t Know.

But as medicine improved, about 1996, there were Drs saying they could repair it–that was not an option in 91. Hers is gone now.

So my layperson’s recommendation is if there is a low risk treatment, such as radiation, that you can do now on an “inoperable” AVM, it might be a good choice, as it might buy you time until your AVM becomes “Operable” due to medical advances.

My two cents, anyway.
Ron, KS

I had my GK 6 months ago. I am much better than before the procedure. The side effect that surprised me the most was tiring so easily. It’s been about a month now that I’m good almost a full 7 days. I have some swelling around the AVM now, but it hasn’t caused anything that I hadn’t had before, and my Dr. doesn’t think steroids are necessary at this point. He said it was swelling because the radiation was working, and several veins are beginning to occlude. If you have any side effects, they won’t be forever and will be alot less compromising than the alternative…
I was very scared too. You’ll do great! Would really like to know how you are afterwards.

I went to see my neurologist yesterday and he told me about a study they are doing into the benefits of Gamma Knife treatment as a kind of preventative treatment in patients that have not yet suffered from a bleed. He said that it is better and easier to get rid of the AVM before the complications of a bleed. We are in the same position my AVM has not bled, I dont have any really serious symptoms ( I could live with them if I had to ). But if he offers me the Gamma Knife after I have had my Angio done, then I am going for it.

HI, back home from my radiation. It was bad but maybe not as bad as I expected. The novacaine shots to the head were the hardest and the halo didn’t feel too comfortable but they had me sedated. It was a long day though. I was there at 6:30 am and didn’t get out til 6:30pm. I am very groggy so headed to bed. Thanks all for the well wishes!
Rachel

John Scragg said:

I went to see my neurologist yesterday and he told me about a study they are doing into the benefits of Gamma Knife treatment as a kind of preventative treatment in patients that have not yet suffered from a bleed. He said that it is better and easier to get rid of the AVM before the complications of a bleed. We are in the same position my AVM has not bled, I dont have any really serious symptoms ( I could live with them if I had to ). But if he offers me the Gamma Knife after I have had my Angio done, then I am going for it.

Good job, Rachel!!! I’m sure you are just exhausted. Go to bed. My son was quite sick the first night so prepare your husband that this might happen. Then just get a ton of rest. Do not push yourself.

Glad that part is over, rest well -

Hi Rachel,

I too am scheduled for stereo-radiation in Dec 09. It seems like your session was a full day one. My Dr wants to schedule a 11 radiation sessions over 2weeks with 30min radiation exposure each session. Do you know what dose of radiation was given to you? My Dr is recommending 55Gy. Is that about the same radiation dose you had?

Thanks for answering my question.

Jim

Hi Jim,

I do not know what the dose was but I will find out. I have a follow up MRI on Oct 29th and a visit with my Neurosurgeon. It was a full day but that’s because I had to go get prepped then have the arteriogram then have the radiation. It was a long day but I barely remember it now. They had me pretty drugged up. My AVM is on my left parietal lobe and is approx 1x2cm. It has never bled. I had two embolizations first, one in Dec 08 and the other in Jan 09 then my radiation Sept 17th. I will be followed now by mri’s every 6 months or so for the next 3 years. I hope and pray it shrinks it and gets rid of it. I feel good though, no symptoms. :slight_smile:

Rachel

It’s good to hear you have no symptoms. That’s what I hope for too. Please let me now what your dose was, I look forward to hearing from you again.

Rachel said:

Hi Jim,


I do not know what the dose was but I will find out. I have a follow up MRI on Oct 29th and a visit with my Neurosurgeon. It was a full day but that’s because I had to go get prepped then have the arteriogram then have the radiation. It was a long day but I barely remember it now. They had me pretty drugged up. My AVM is on my left parietal lobe and is approx 1x2cm. It has never bled. I had two embolizations first, one in Dec 08 and the other in Jan 09 then my radiation Sept 17th. I will be followed now by mri’s every 6 months or so for the next 3 years. I hope and pray it shrinks it and gets rid of it. I feel good though, no symptoms. :slight_smile:



Rachel

Hi Rachel, I’ve been thinking about the same question lately, even though I still have to have 2 embo’s scheduled before they start the radiation treatment on me.
I think it’s important though to get rid of the empty bits of bloodvessels before they can start filling up again… not sure, but I don’t think it’s safe just to leave them there.
Let me know how it went, please! I’m crossing my fingers that everything went smoothly and you’re still feeling just great :heart: