Possible side effects from radiation

[tsl]

Hi,
I'm still exploring options for the treatment of my AN; I'm leaning more towards radiation  than surgery.  I'll be meeting with a radiation oncologist in Boston in a couple of weeks.

Although I know every case is different, I'd appreciate knowing what the possible side effects from radiation treatment people were told by their doctors.

Thanks,
Theresa

[Richey]

I was told to expect no side affects except some soreness from the headframe being put on. However withing 24 hrs. I had nausea for a couple of days and my balance issues were temporaily worse. That could have been the radiation or it could have been from the shots that they gave me in my head before putting on the frame. Also within a couple of weeks my hearing became distorted and in a couple of months it was gone all together for any useful purpose. I had been told that I had a good chance of hearing preservation with GK but that wasn't the case for me.
  My hearing has remained unchanged since, my balance does pretty good most of the time now and it's been two and a half years since the treatment. My tumor is stable but has not shown the signs of necrosis that I was hoping for so far. I had my last mri in Feb and I'm waiting until next Feb for my next one as the last three have all looked pretty much the same over an 18 month period.
  I think radiation treatments have less side affects than surgery but they are not totally without risk.
Hope you do well with yours,

Rich

[Sue]

Well, you might lose some hair!  See Bald Spot post by Sue.

Sue in Vancouver USA

[GM]

Ability to pick winning Lottery Numbers...have only green traffic lights...and never hit any highway traffic       (Just kidding)

Being a bit tired for a few days, and a chance of some swelling of the tumor...

I'm happy with my decision.

Gary

[linnilue]

I think that it would be good if you could go back and review my previous posts becasue there really are side effects from radiation and I had/hav alot of them.  Some have been quite serious and others miniscule but nevertheless they all mattered.  I was never fully informed.  I was told that the side effects were basically non-existant, so not true.  If you can't find my posts, let me know and I will update.  Good Luck, Holly

[pearchica]

With cyber knife, I was told of maybe some fatigue, maybe some hair loss. I didn't really have any side effects, but I was very lucky.

Take care, Annie

[Patch]

Hi, I had radiation done in July 07, I'm coming up on 3 months post radation. So far, Ive been feeling good. On occasion I feel off balance or unsteady. Feeling off balance is a challenge of itself. What I do is sit down and relax from 1/2 hr to an hr and I feel fine afterwards. I have a follow up in Oct. and will advise all how it goes.

My treatment plan was 6 low dose treatments (Mon, Wed and Fri ) for 2 weeks. No hair loss but can't tell, I keep my hair military style 

Mark 

[okiesandy]

I had CK Jan. 06. Had some mild flu like symptoms and fatigue. Before treatment I had some facial numbness and loud tinnitus. I didn't have hearing in the AN ear so that was not an issue.

So far I am very pleased with my decision. The tumor is smaller, tinnitus is much less and no facial numbness. I went back to riding my horses, walking a couple of miles a day and doing everything I have always done. Balance was very important to me. I didn't have good balance before treatment and now it is a lot better. My body is coping with it. My fatigue lasted quite a while. I recently found out it had very little to do with the treatment or the AN. It is a whole other health issue issue.

Everyone reacts differently and everyone recovers at a different pace. I am so thankful I did not go through with the planned surgery. My treatment was so easy that I am almost ashamed to admit I was scared of any decision. Wish I had done it sooner and spared myself the needless worry about which treatment was the best for me. Believe it or not I seldom even think of the tumor and haven't been on this site in quite a while.

Sandy

[mema]

I've had chronic headaches since radiation.  Also spasms in my head.                                                                                                 



                          mema

[Lorenzo]

I had extreme fatigue for about 6 months, louder tinnitus for a while, and problems with being able to cope with stress. Work pressure was a bit much for me and had to scale back temporarily.

Nearly three years post Ck now and I'm doing BETTER than I have for at least 10 years, more energy and a much better outlook on things. Noise is still a bit of an issue, but nothing like it was for a while after treatment. AN is shrinking back to smaller than before CK and it's dieing. Nxt follow up in two weeks time, then we'll see! Tinnitus is the same, 5% lower hearing, no balance issues to speak of, except when tired or in the dark.

Happy with the decision, not a walk in the park for me, but now things are great.

By the way, I have a blog of my CK experience, if you send me a personal message I can forward it to you if you want.

Ciao, Lorenzo

[Sheryl]

My husband just had CK at the Beth Israel in Boston on October 1st (a little over a week ago) and today he was out in the yard digging up plants, moving big bags of mulch around, and doing fall clean up - I had to yell at him to come in and rest.  It could be the Decadron that he is slowly tapering off.  So far the only side effects have been alternating "hyper" state and fatigue and even though he did not have an acoustic neuroma, he has been slightly dizzy upon changing positions - but this is not a new occurrence with him.  He had a meningioma (another benign tumor) removed surgically in May of 2004 and found the regrowth in November of 2006.  After months and months of consults and decision making, he decided on the CK, not wanting another surgery.  If this works in controlling the tumor's growth; i.e., stopping it or even shrinking it a little, it will be a miracle.  He is a very anxious person and managed to get through the procedure fine - "It was a piece of cake".  Not sure if we've corresponded before as I lost all my previous messages, but feel free to write and do keep us informed.
Sheryl
p.s.  I've been a "wait and watcher" for 6-1/2 years for a ninth cranial nerve schwannoma which has only changed 3 mm in that time.  I have already decided on CK if or when anything needs to be done.  Yearly MRI is coming up in November but I think my extremely minimal symptoms are the same.