Hello All,
Just wanted to post about my recent experience with a "flare up" of symptoms a little more than 3 years after my CK procedure.
I had been feeling basically symptom free for a while, maybe almost a year, when last month, I suddenly started feeling my old AN-related symptoms, such as head fullness and dizziness and feeling kind of like my head is a bowling ball. The symptoms were as intense as I was feeling in my first few months after treatment. It was pretty unsettling and scary as well.
I contacted Dr. Chang and he assured me that this kind of flare up is not uncommon in CK patients. It is highly variable, in the sense that there is no telling who will get them or when, but it does happen. He said these flare ups are due to the fact that the nerves in the AN area are generally weakened and damaged, so that relatively minor disturbances may set off an episode of symptoms. These flare ups can last anywhere from 3 weeks to several months (Dr. Chang said he has seen them last up to 8 months), with 2 months being the average duration.
In terms of addressing them, Dr. Chang generally recommends just waiting them out. Sometimes he will do steroids but this doesn't "cure" the issue since after the meds wear off, the nerve inflammation returns. However, this can be useful to rule out regrowth, since if the meds work, it means the problem is inflammation and not tumor regrowth. Naturally, he also recommends our regular MRI check-ups to ensure there is no regrowth.
Dr. Chang told me he has a forthcoming paper addressing his most recent CK results - they show a tumor control rate of about 98%, so the statistical results are still amazing.
I found all of this information helpful - because it was just nice to know my experience was within the realm of normal and expected. I pass this along for those of you who may experience similar episodes.
Also, I am going to be posting an in-depth interview with Dr. Chang on my website within the next month. I will start a separate thread to see if there are questions you would like addressed.
Best wishes to our health and well-being on all levels!
Francesco
