Author Topic: How long before I can feel "safe" about not getting radiation side effects?  (Read 2725 times)

KMajor

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Hello,
    I had CK 17 months ago.

    Does anyone know, when do I reach the point in time where I don't have to worry about bad side effects?  I am hoping I am already there, but I have heard anywhere from one to two years.

    I can't report what the tumor is/is not doing, because I can't handle getting an MRI.  My doctor is NOT HAPPY about this, but I simply cannot do it. I figure the tumor is doing to do what it is going to do, regardless if I get a scan or not. There is simply NO WAY I can get the scan. I want to, but cannot.

    This is my second go around with an acoustic neuroma, and I just pray it is the last time.

     Be well,

     K

   

   

Mark

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K,

The various possible temporary side effects from radiation treatment are usually quoted as up to 18-24 months. From my observations and conversations with other people's stories over the years I would subjectively say that the vast majority of folks have whatever experiences their going to have within the first 6-9 months. At 18 months, if you haven't had any side effects or none in a while then I think the odds are extremely high nothing will occur going forward.

Regarding the MRI, I can certainly sense the high level of discomfort and anxiety the MRI experience creates for you. I assume this is primarily something claustrophobic in nature, and I know others with similar issues have been given some medication like valium to allow them to be scanned. Has your doctor offered some form of medication to ease your anxiety level. The other possibility is to go somewhere where they have an "open MRI" . The drawback is that they are slightly less accurate so comparing any changes to your first scan needs to done carefully. Either way, I would urge you to try and find a way to have a follow up scan to verify the success of the treatment

Best wishes,

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

pearchica

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I never have felt any side effects from radiation.  The only side effect I had was the high energy level from the Decadon (steriod to prevent edemna) post CK treatment.  I hope you will pursue the open MRI option if you can handle it.  I had great peace of mind post my first MRI but I know that MRI's for some are very difficult.  Good luck- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

tsl

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Hi K,
When I read your post I wasn't sure what you meant by you couldn't handle getting an MRI.  If you mean the anxiety and stress of getting the results of the MRI, I think you need to take steps to overcome the anxiety and stress.

I just had radiation treatment a month ago so I've got a long ways to go before I'm due for an MRI to check to see what's going on with my AN.  I'm sure as I get close to the date I'll be a basketcase wondering if the radiation worked.  But I also know that if my fears get the better of me I can call the therapist who helped me deal with my diagnosis in the first place.

You need to get the MRI because you need to know what's happening with your AN.  The odds are greatly in your favor that your tumor is dying.  You made the big decision of what treatment  to undertake.  You took control of your situation.

 If you need some help so that you can do the MRI, don't rule out talking with a good therapist.

Take care.
AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

Jackie

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Hello K,

Speaking as a person who absolutely freaks with an MRI, proper meds. are the only way to go! My first MRI was done in February, meds didn't work until after the MRI was overwith, next MRI was in July with properly administered meds. and it was a breeze, and so was the one in Oct. As one who suffers horrible claustrophobia, meds are the only way to go!

Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???