ETS

[dogsr124]

Hi this is for anyone who is considering ETS and is having a hard time finding stories of people who have had it. In no way am I saying you should or should not get it, but this is just a story of what happened to me.


I'm 23 years old and have dealt with Rosacea for about 4 1/2 years. I was perfectly normal before and than one day I got a hot flash over my face and over the next 4 years it became worse and the redness became permanent. I tried every thing from beta-blockers to laser treatments. While the V-Beam laser did turn me back to normal it was short lived. I was triggered by everything. Even in a cold room I could not go in without a fan on my face. Being exposed to any weather with the sun out was out of the question. Computers were also a HUGE trigger. My blood vessels would dialate so bad that it would look like I had a terrible sun burn for around 5 days before it faded back to just being red. I was told by doctors that their was nothing they could do and when I mentioned ETS they said NO WAY!!!! I refused to give up though. I went to a Rhuemotologist for about the 3rd time this time at Stanford University. He found nothing Rhumeotology wrong with me and sent me to a dermatologist at Stanford. He said there were no topicals or laser treatments that would bring any relief to me and the next option would be the ETS surgery. He sent me to a thoracic surgeon at Stanford who hadn't had many experiences with people like me, but was very experienced in doing the surgery for hyperhydrosis. I knew of the side effects that were possible and tried to do as much research as I could, but their weren't alot of stories out there and this is why I am posting this. I ended up getting the surgery and I can say the flushing is 100% gone. I don't have any more burning or redness. I was a little pink, but a few laser surgeries cleaned up the redness and I can say I am back to normal. I don't have any bad side effects. The only side effects I've experienced is warm hands and a little sweating on my lower back, but that only happens when I'm on the computer for a long time. I hope this story helps someone and if you would like to know more you're more than welcome to email me.

[phlika29]

I don't think anyone would have a hard time finding stories about ETS. Here is one very good website that gives many stories:

http://www.truthaboutets.com/Pages/ETSheadlines.html

I cant imagine why anyone would risk the possible side effects, especially when there are many other options for rosaceans.

[dogsr124]

Everyone is different. I had no choice, but to risk the side effects for what the outcome could possibly do for me. I was in my room under a fan for 24 hrs a day, the second I got away from a fan it was unbareable. So why would I not risk it??? In my case I had nothing to lose. Also the bad compentasory sweating from what I've been reading is with people that have had hyperhydrosis, I've had no such experience. You can try all you want to question my decision, but it was the best decision of my life. Also that link you gave, those are terrible doctors who push you to have the surgery, I went to one of the best hospitals in the world and was given a choice, not advocated to have it.

[phlika29]

I am not questioning your decision. I am making putting forward an alternative viewpoint on ETS to ensure that anyone who reads your post is fully aware of the potential risks.

[dogsr124]

Ok fair enough, the point of my post was just to point at a successful story of ETS. Their weren't alot of postive stories out there when I was doing my research on it because most people don't bother coming back and posting their postive outcomes and I felt that I owed to at least share my story.

[RedMan]

Hey, I would like to hear more details about the proceudre they did with you and what they did exactly and how it went.

Did you have neurpathic pain associated with the flushing? If so, did the surgery help?

Also, did they clamp the nerve or what not or did they cut it? Is the procedure reversible?

I have heard bad things about ETS, but I don't know, I am in the same boat. I am severely debilitated from the flushing and neuropathic pain that comes with it. I am basically banking my life on Sansrosa which should stop the flushing completely (but you never know). That is also still a few years off, as they have not even started the Phase III trials.

I suppose my plan is to try different medications until Sansrosa comes out and If either of those do not pan out I may explore this surgery as an option. I am in the same boat, I am reclused due to the flushing and pain and everything is a trigger (sun, wind, stress, anxiety, worry, computers, tv screens, the list goes on and on). Even when I sleep I dream of things happening to me due to the flushing and pain in my face, I can never get away from it. I try to stay really positive about things and put on a good face to the world but I have to say I no longer fear death and almost welcome it.