what happens after radiation ?

[lmurray69]

I would like to know what happens after radiation , any side effects. I am 1 week away from radiation,

[jgentner]

I am 2 1/2 weeks post radiation via Novalis Shaped Beam, i treatment option.
I had a terrible time with the steroids, (decadron).  They made me spacey, and I had a numb feeling over the entire surface of my body.  Then I got a bad case of bronchitus and sinusitis, not sure if it was related or not but my suspicions are that my body was really in a weakened state because of the bizarre effects of the steroids and I'm seriously beginning to wonder if others with AN have problems with sinus issues.  I was diagnosed in May, 2004 but for about the last 3 years I have had serious sinus infections that have taken weeks to get cleared up and I was told that I probably have had the tumor for about 12 years.  So now I'm wondering if the increased size and possible location of the tumor have contributed to these sinus issues.

I don't think my post radiation results are typical but would be curious to hear from others also.

If anyone has any information regarding the sinus issues would love to hear it.  Also interested to know if anyone else has has issues with sinus after the radiation.

I have never used one of these sites before so hope I do it right.
j

[Becky]

Hi J. 

I had surgery 1 yr ago 3/1/04.  I had problems with decadron, as well, but it made me hyper for one thing. 

I don't have first-hand experience with radiosurgery, but I have read the tumor swells before it can shrink/die.  Were you taking decadron after the treatment for this swelling?  Could some of your sinus problems be temporary due to the swelling? 

Sorry I can't be much more help.  How large was your tumor?  When is your next follow-up MRI? 

I've had 4 CT's and 4 MRI's since my surgery.  It's a journey.  I wish you the best.  And, welcome to the forum

Sincerely,
Becky

[farmboy]

I would like to know what happens after radiation , any side effects. I am 1 week away from radiation,

Hi Imurray69

I had Gamma Knife on Feb 8,05 as of this date I have no side effects for treatment.  My AN was 1.4cm with pretreatment balance, dizzyness and loud tinnitus on AN side.  I am no medication from the treatment my balance seems to have improved some, no dissyness and the tinitus seems to be about the same.  My wife has indicated that I am safe to drive except when tired which I get from too much exercise.  My hearing in the AN side is the about the same I have slight sound detection in AN side both pre and post treatment.   If you have any more specific questions please feel free to contact me.  Melvin

[Rob Mercer]

It has been 4 months since I had GK treatment at UPMC.  Since then the hearing in my AN ear has gone from about 50% speech discernment  to zero.  Otherwise I have had no adverse symptoms.  I have my first post-GK MRI  the week after next and am hopeful of a good report.

[lmurray69]

I had radiation in March of 05 ,I am having a hard time remembering, dizzy spells.no hair loss, Had 5 shots in one day ,,

[jamie]

Hello Imurray,

Sorry to hear about your memory problems and dizzy spells. Did your doc say your memory problems could be caused by your treatment, or perhaps there is another issue that may be contributing to it? I've never heard or read of that side effect, but sometimes people do react in different ways. Also I'm curious what you mean by 5 shots in one day, did you have radiosurgery? What kind of machine was used? How has your tumor reacted to the treatment? I had CyberKnife a bit more than three months ago, I just had my first follow up MRI and it's already dead inside, without swelling. All of my symptoms are gone (although I had a lower cranial nerve schwannoma than an AN, those nerves are less sensitive). I have no side effects from the treatment, other than a few dime sized patches of hair lost, but that's all grown back now.

[lmurray69]

my tumor has grown in size although it is small 8mm it was 6 mm in march of last year ,I had radiosurgery they put a halo on your head for 5 hours and do 5 different directions  radiation.. I also have had 5 TIA 's   

[jamie]

That sounds like Novalis or something similar, I know that machine can use either a headframe or a mask, but it loses accuracy if the mask is used. Did you speak with your doctor about maybe taking a anti-immflamatory? Perhaps the side effects you are having are due to swelling, sounds about right as far as the timeframe. Did you tell your doc about your side effects? 

[Windsong]

I began having sinus problems about 4 yrs ago.....big surprise for me as not had that before.  i've been told my An may be anywhere from 5-6-10 yrs around in my head....
I have had some minor early morning nose clogged up feeling and drip on the An side  recently (same side as sinus pre An diagnosis).... so all i can say is in my entire life i had no sinus probs until this An seems to have grown and made itself known enough for someone to find it.... i don't think the radiation has anything at all to do with it now as it's no different than the months and yrs i ran around trying to find out what was going on in my head....except that it's now almost non existent after treatment.

Windsong

[SuzeAN]

Hi,  I had CK for a 2.5 cm vestibular schwannoma on Oct 2.  As of today I feel fine no side effects, slight hair loss noticeable only when shampooing. I had three treatments about 30 mins a day, felt some nausea on the second day, and tired on the third.  Will have my first followup MRI in January.  Before treatment had some annoying shooting pains in the area behind ear, but now all gone.   Also my tinnitus unfortunately has remained with me, hearing seems to be the same; I still hear every slight noise going on in the house (i.e. like who is in the fridge again, or if the dog is scratching at the door LOL)  -Suze

[CC]

I had cyberknife for a 2.8cm AN over 3 days at the end of October.  Felt 'delicate" on first day which I attributed to pre-treatment wrorry finally catching up with me.  Normlay twitchiness, irritability and hunger with the steroids.  Hiked through Yosemite for 4 days (one hike 13miles long and one through the snow at 9,500 ft) a week after treatment.  The severe fatigue and 12 hour sleep patterns hit around week 2 and have just passed (hooray!)  Another member told me about a dietary supplement called Vitalzym (it's enzymes) which helped tremendouly.  No hair loss, no headaches.  Some strange skin prickling at what I thought were the "entry sites" of the radiation.  My tinnitus which was never really bar to start off with has alsmot disappeare d(the doc says this is very rare) and my hearing, which was also never really bad to start off with, is better (maybe becuase the ringi gn my ears is notthere anymore?)  My doc says I'm "hyper-vigilant" so am feeling every teeny little thing - and I agree.  But now I can go for a coupel fo days wihtout thinking abotu the AN which is wonderful!

Good luck with your treatment.  Keep us posted.

Windsong: my CK team think some of the symptoms I'e attributed to the AN may actually be sinus problems.  I too had chronic sinusitis - it is better now but I'm more diligent in medicating.

CC