Monday, April 23, 2007
Hi everyone,
So shortly after I last posted, I did decide to go back and get the two little spots that had not gotten enough radiation re-treated. I got 14 treatments, not the full 20 since your skin never really forgets radiation that it has received in the past. My RO was great in understanding that even though 98% of my skin was totally cured, I wanted this area, which was the part in between the thighs that rubs back and forth, to get totally cured too.
It's been more than a year since, and it's been great--all of it. No matter how long it's been since I got my life back, though, it's hard to say it's great, because I always worry about jinxing it, but it's worth it to tell all of you, if it will help in educating you about the pros and cons of radiation. It's been almost three years since I was treated on nearly 30% of my body for HS--I had dropped out of law school, was unsure I'd ever sit again, be able to do normal things like work, wear jeans, take a bus ride, go to a movie, or to the gym, walk for more than a few blocks or in more than 50-degree weather. My life was consumed with trying to figure out what food could hurt or help, what supplements I could take, all of it.
And now, slowly but surely, the mind readjusts. There was a lot of scar tissue around the tailbone, which hurt no matter how little pressure I put on it, and no matter that there was no active HS there anymore. Now, I get migraines often enough that I need preventive treatment for them, and several drugs, like Topamax and the tricyclics, also help with neuropathic (nerve) pain. Coincidentally, it really has helped the pain in the tailbone, as a lucky, bonus side effect.
The only side effects of the radiation treatment thus far have been that, with doses above the normal 40Gy, you get telangiactasia, or the red type of spider veins, little blood vessels like you see on the noses and cheeks of people as they grow older. This is treatable with cosmetic lasers, if it bothers you. I've finally decided to go to a dermatologist and have mine treated, because it is a pretty wide area that is affected for me.
Please email me with any questions you have regarding radiation treatment, or anything about HS (since I will always, unfortunately, be a lay "expert" on the subject) at bradley.moller@gmail.com. I am happy to help, and happy that I get to share a happy story with you!
*For the full story, read from the bottom, of course!* All my best....
So shortly after I last posted, I did decide to go back and get the two little spots that had not gotten enough radiation re-treated. I got 14 treatments, not the full 20 since your skin never really forgets radiation that it has received in the past. My RO was great in understanding that even though 98% of my skin was totally cured, I wanted this area, which was the part in between the thighs that rubs back and forth, to get totally cured too.
It's been more than a year since, and it's been great--all of it. No matter how long it's been since I got my life back, though, it's hard to say it's great, because I always worry about jinxing it, but it's worth it to tell all of you, if it will help in educating you about the pros and cons of radiation. It's been almost three years since I was treated on nearly 30% of my body for HS--I had dropped out of law school, was unsure I'd ever sit again, be able to do normal things like work, wear jeans, take a bus ride, go to a movie, or to the gym, walk for more than a few blocks or in more than 50-degree weather. My life was consumed with trying to figure out what food could hurt or help, what supplements I could take, all of it.
And now, slowly but surely, the mind readjusts. There was a lot of scar tissue around the tailbone, which hurt no matter how little pressure I put on it, and no matter that there was no active HS there anymore. Now, I get migraines often enough that I need preventive treatment for them, and several drugs, like Topamax and the tricyclics, also help with neuropathic (nerve) pain. Coincidentally, it really has helped the pain in the tailbone, as a lucky, bonus side effect.
The only side effects of the radiation treatment thus far have been that, with doses above the normal 40Gy, you get telangiactasia, or the red type of spider veins, little blood vessels like you see on the noses and cheeks of people as they grow older. This is treatable with cosmetic lasers, if it bothers you. I've finally decided to go to a dermatologist and have mine treated, because it is a pretty wide area that is affected for me.
Please email me with any questions you have regarding radiation treatment, or anything about HS (since I will always, unfortunately, be a lay "expert" on the subject) at bradley.moller@gmail.com. I am happy to help, and happy that I get to share a happy story with you!
*For the full story, read from the bottom, of course!* All my best....
