5 months post CK symptoms no better

[scgirl]

My mom 79 (in excellent health) had CK 5 months ago for AN that came back after 30 yrs. She didn't have any symptoms until it was large and only course of treatment was CK do to the size impeding the brain stem. Post CK had to take steroids for 2 months to  reduce brain swelling- unbelievable side effects just starting to subside now. Leg leg impacted due to size of tumor pressing on brain stem- has to use walker and now right leg is starting to get hard to use. Did PT to learn how to do basics. Energy is low, seems to be getting worse and mobility/balance getting worse. Now has developed frequent urination - up 4-6 times at night- not sure if post CK related. Dr. won't do MRI until 6 months to see if any changes. Now we are trying acupuncture to help with muscle atrophy and brain healing. We knew there was no guarantee and it would take time - we are willing to try other alternative therapies. Anyone have any advice to keep her positive attitude going- she is a fighter, and determined. Thanks for listening.

[LN2]

Hi...your mother sounds like my mother.  My mom is 85 years young,in excellent health, full of energy, positive attitude.  Five years ago she was diagnosed with a 4mm AN which has now grown to 9 mm. According to her doctor, it is not near her brain-stem.  Her symptoms have increased, balance/dizziness/ loss of hearing too. She has seen two  doctors in our area, south florida, each telling her to watch and wait.  Spoke to a doctor at the House Clinic and he wanted to do surgery.  My mom is now considering having cyberknife with a Dr. Wolf in Miami.  I was wondering what doctor did your mom's cyberknife treatments.  Did he tell you of the possible side effects from the treatment?  My mother would love to speak to your mother because she is scared.  She feels she has to do something to help with her symptoms. 
thanks for any information you can give us...

[crivers]

LN2 and scgirl,

I am sorry to hear about your mothers. It is an unfortunate situation. This AN and the treatment seems to be so varied in it's impacts on the individual. I am only post CK for 1 week, and I don't have any of those issues that your mother has, but it doesn't seem out of the realm of possibilities. I don't have any specific advice for you, but I just wanted to send my best wishes for all of you. If you have spent any time at all on this board, you'll see that treatment decisions are very individual. I took it all in, decided on CK and am happy so far with that decision. LN2, I hope your mother can get enough good information to make the right decision for her to feel comfortable. I would say there is nothing to worry about with CK, but as evidenced by scgirl, there doesn't seem to be a sure thing. Not a cut and dry situation, but I hope the best for you.

Cayce

[Tumbleweed]

Take heart and have hope. I had an unusually severe reaction to CK for the first two months, and was dealing with side effects for another 4 months after that. Then suddenly I began to feel dramatically better at the 6-month mark. Some people take over a year before they feel better. My AN ended up shrinking dramatically. Due to her age, it may take longer for your mom to recover compared to a younger person. Just know it takes time, and her present condition does not presage her future. She'll probably start feeling better within a few more months or so.

Best wishes,
TW