I began flushing in early adolescence and it lasted until my thirties. At 33 I discovered ETS. I researched it as much as possible, participated in forums and found the best doctor I could. Although I had a consultation with a local doctor in New York, I didn't want to take any chances, so I eventually decided to go to Canada to see Dr. Spratt. He struck me as very honest and open, and seemed to tell me everything he knew about the procedure. Unfortunately, I think the problem is that not enough is known, so even with the good surgeons you are really rolling the dice.
I had the surgery in July of 2000, and for the first year I was in great shape. My flushing had nearly disappeared, and I had no side effects except for a slight increased sweating on the chest. In that year I began to feel more confident and mature due to the decreased flushing. I was able to perform my job better, socially interact more easily, and everything looked great.
But finally in the Fall of 2001, more than a year after the surgery, I had my first real attack of CS. I was on my way to work, standing on the train, and the sweat began to pour off my back and chest. I was wearing a T-shirt (fortunately), but the sweat soaked right through it and through my outer shirt. I went to work and attended a meeting, and it took hours before my shirt dried. Luckily the winter was soon to follow, and the CS disappeared, but I did notice I was more sensitive to cold. When spring came in 2002 I was in very serious trouble. The sweat fell off my body like rain. I would see wet spots on the seats of chairs when I stood up. I had to wear shorts to work and change clothes when I got there. The most frustrating thing is that it took forever to cool down, even after going into an air-conditioned room.
Now that winter has returned, and things are of course much better, but I notice that I sweat if the room is overheated, which was never the case last year. I also sweat more in socially stressful situations. So I'm concerned that my situation is getting worse, and while I used to fear blushing, now I fear heat. I've tried every imaginable solution - the most effective being Botox, which was expensive, and I just have too much surface area to treat all the sweating; and Ditropan, which reduces the extreme sweating. But even when I'm not sweating, I can get really hot. In fact, when I don't sweat, I feel hotter. My skin feels like it's burning up. On the other hand I can also get really cold, and I shiver easily, but this doesn't bother me as much. The trouble is that it's so variable and unmanageable. For example, it's usually worse in the mornings. It's now January, averaging about 30 degrees outside, but I'm still very warm when I leave my house. I bought a thermometer/hydrometer for my office, and when I get to work, it's about 70 degrees, 25% humidity, and I'm so hot I have to take off my shirt and splash cold water on my face. It takes about a half-hour to cool down. By late morning I start to get chilled, and I feel cold the rest of the day. I look at the thermometer and it's still 70/25. At the end of the day I have to go into another room, which tends to be overheated. Although I don't usually sweat in this situation, my face gets really hot and I often get headaches. If I could only sweat from my head I don't think I would feel like that. And it's weird, not being able to sweat from the head. It's like my head is disconnected from my body somehow. I never imagined how much I would miss sweating from my face. I occasionally get GS (not often) when I eat spicy foods, and when I get a sensation of sweat on my face it feels like heaven.
I'm now looking into a Reversal. I know that my side effects are not as severe as many others, but the CS and thermoregulatory problems are torture. I'm very glad I don't flush anymore, but I didn't think the trade-off would be this bad. Even if a reversal would only give me sweating back on my face, I think it would be worth it.
Given the information I had at the time, I understand why I chose to get ETS. I knew the risks, but my flushing was so debilitating that I took the chance. Unfortunately, I wasn't one of the lucky ones.
As mentioned before in July 2000 I had ETS with Dr. Spratt, a T2 clamping for flushing. Dr. Spratt was very honest about the possibilities of side effects, but I took a chance because the flushing was causing me so much trouble socially. The first year was great but suddenly in September 2001 I had my first attack of CS, and I began sweating profusely whenever the weather was hot or humid, as well as when I was anxious. Because of the late onset of the side effects, I didn't think a clamp removal offered much hope. In February 2003 I had an intercostal nerve graft with Dr. Lin. I had minimal chest pain from the surgery but the skin on the backs of my arms was extremely sensitive for about a month. I no longer have any discomfort. Two months post-surgery, I seem to have less of a constant hot feeling, although I can't tell that I'm sweating any less. From time to time I get the sensation that something is changing, e.g. a slight sense of facial sweat, but so far these episodes have been short-lived. My hands are very hot and dry, even more than before the nerve reconstruction. I'm still hoping for improvement but I'm not optimistic right now.
Simon (U.S.A)
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