Hi Mary,
Great post...I hope you don't mind if I share additional in what you note.
Tumor swelling can occur anywhere from the beginning of treatment to down the road, but yes, you are correct about 6 mos. I was told that the swelling can occur anywhere between the first month up to 9 months (approximation). The tumor (as you note) will tend to swell prior to necrosis (tumor death). The true concern is nerve swelling as well (vestibular, trigeminal, etc) as this should be closely monitored the first months post treatment. As we know these nerves are so close in proximity, there is a slight chance that they may receive a slight "zap" during treatment, thus, bringing on some side affects as enhanced tinnitus, dry eye, etc. which are usually temporary. Some treatment dr's have prescribed steroids down the road (for just a few days) should any of the swelling cause side affects (I think Mark was given steroids for a few days a few months down the road post treat... he can better clarify or there is a post here by him that notes this).
All in all, many of the potential side affects (many CK patients note no side affects post treatment) are temporary and for me, are very tolerable as life certainly does move along. For me, they are minor inconveniences in the overall battle to "kill the booger" that is in my head.
Mary, continued success and wellness to you. You are doing fabulous and so thrilled with your progress.
zjane, sounds like you are right on schedule with your tumor swelling post FSR... hang in there...
Phyl
After the treatment, I asked the doctor when the tumor would swell if any. I understand the "killing" of the DNA of the tumor cells will occur and may cause the tumor to swell a little. I was concerned if it does swell, it may cause more side effects such as pressure against the trigeminal nerve. I had trigeminal nerve irritation prior to the treatment. The doctor told me that the swelling of the tumor usually starts in 6 months but there may not be any side effects.
I am actually better since the treatment a month ago as far as facial sensation goes. I don't have any more sharp shooting pain which allegedly was caused by trigeminal nerve irritation. Thank goodness because that was the most excruciating pain I ever had. I understand nerve pain is the worst pain you can get. So far, I only have just a little facial tingling at times. My tinnitus is little louder. Other than that, I have no other symptoms.
Hope this explains.
