Some of you have asked why haven’t I had endoscopic thoracic sympathectomy (ETS) surgery. ETS is a very serious medical procedure that most people with hyperhidrosis turn to as a last resort for relief. There are pros and cons to this procedure, and the side effects, especially compensatory sweating (CS), are real and do occur. I spoke in person to someone who had ETS performed when I went to a hyperhidrosis symposium. We spoke for about 20 minutes, and he was sweating through his black T-shirt the entire time. He came to the symposium seeking Botox treatment for relief from compensatory sweating. While his original sweating had been cured, he was still suffering from the side effects of ETS surgery.
Because compensatory sweating can be worse than the original sweating, many people are now turning to subdermal laser ablation (SDLA) for secondary relief. SDLA typically is not covered by insurance and can range in price, with the upper end being around $10,ooo. For a treatment that isn’t guaranteed to work. I’ve also spoken with someone who has ETS and is now trying SDLA; she, I believe, is going through multiple rounds of treatment in an attempt to stop the compensatory sweating in her trunk area.
Only you can decide whether ETS surgery is something you want to pursue. Like any medical procedure, there are risks and benefits. The hard part about ETS is that you won’t know whether the treatment will work until after you’ve had it. They say the CS can lessen over time, but for me, this is a side effect that would be worse than my original palmar and plantar hyperhidrosis. I already experience CS on my back after having Botox. I am not willing to subject myself to a procedure that is not guaranteed to work, is a serious medical procedure, and would most likely make me sweat in a different area of my body that could be more socially and professionally debilitating and harder to hide. I don’t want to have to worry even more about the types of clothes I can wear, completely sweating through my clothes and drenching a seat, or the damaging emotional impact from sweating even worse than I already do. I deal with my inner monologue enough as it is. I don’t want to give it the surround sound IMAX experience.
Once the nerves are ablated from ETS surgery, there is no going back. ETS is a permanent procedure. There have been no effective ETS surgery reversals reported. If you are considering ETS, please do your homework. Pay attention to the sources from where you are gathering information. Most search engine results will tout the awesomeness of ETS surgery. Of course they will. They want your money. Find a physician who is connected with the International Hyperhidrosis Society (IHHS) using their Physician Finder. These physicians are IHHS-approved and will have better knowledge about hyperhidrosis. They have an arsenal of information and other treatments for hyperhidrosis besides surgery.
I’m not saying there aren’t successful ETS procedures performed. Some people do have great results. Only you can decide whether ETS is right for you.
To understand more about where I’m coming from regarding ETS surgery and how my body has responded to the treatments I’ve tried to stop my excessive sweating, you can read my post Reflections on Botox.
Copyright © 2012 My Life as a Puddle
After learning there would be a CME symposium on hyperhidrosis in my area, I had to complete a registration process, fill out paperwork, etc. One of my first contacts was with a support specialist at the International Hyperhidrosis Society. After my symposium and Botox experience, I wrote her a handwritten card. Yes, she was a complete stranger, but that doesn’t matter. That’s part of the beauty. I was able to affect someone whom I’d never met just as much as she was able to affect me.
I would like to express my sincere gratitude to you for helping me get connected with the patient volunteer aspect of the CME event in Denver this April. When I emailed the IHHS, I was not expecting such a prompt response, yet there was your email in my inbox offering to put my name on the list to receive Botox injections. I am thrilled to report the treatment is working! My life has changed because of it, and because of you. The part you played was integral in getting me the next step of the way on my way to liberation and confidence. Thank you for being awesome at your job and for being the one who replied to my email. You matter, and you should know that you do. I’m now volunteering for the IHHS. Perhaps one day we’ll meet and I can shake your hand- mine will be DRY, too!
I’ve been writing cards and letters for years, and it’s amazing what such a simple act does for me and for the recipient. It becomes tangible evidence for someone that they rock, that their existence matters, that someone cared enough to let them know. Have you heard of the Note Project? It’s about making the world a million times better. I encourage you to check them out. I’m currently in talks with the Note Project’s founder, Mike O’Mary, about possibly using all or part of my manuscript on the lost art of letter writing for his upcoming book. 🙂
Copyright © 2011 My Life as a Puddle
I hand wrote this letter to the executive director of the International Hyperhidrosis Society (IHHS), whom I met in person the day I received treatment. This is how I was feeling approximately 1 week after I received Botox injections for palmar hyperhidrosis (HH).
I would like to express my heartfelt gratitude to you and your staff for organizing the CME symposium on HH and for giving me a chance to receive free treatment. When I arrived and saw the signage proclaiming excessive sweating and read all the stories about people just like me, it was incredibly validating. I felt like the symposium was created just for me and was all about me. I could finally sit in a room and sweat without any worries, while at the same time listen to experts who are pioneers in the field and who offer treatments of hope. I met another attendee whose husband had ETS and now has CS [compensatory sweating] as a result. She and I got to talking, and when I told her about the mental and physical turmoil I go through on a daily basis, she was moved to tears. [For example, I told her stories about my high school proms and hating dress clothes because they’re not sweat friendly, and what happens when I go the doctor’s office.]
Being able to stand there and talk openly with her, and then with the other patient volunteers, I felt like I had met my tribe. On that day, in those 2 rooms, for those 8 hours, I stood in my truth and was liberated. Sweating was exactly what I was supposed to be doing; for the first time, I was comfortable in my sweating glory. I was one of the last patients to be injected, and Dr. [Sweat] was fabulously wonderful. I wasn’t sure I’d be able to go through with it after watching the injection videos, [Note—if you are someone who is easily grossed out and can be influenced by visual images, I do not recommend watching these videos prior to getting treatment. In this case, ignorance really is bliss.] but desperate times call for desperate measures. I faced my fear and came out on the other side better than I was before.
While I hope and pray the Botox works, if it doesn’t I still know I am bigger than my circumstances and refuse to be reduced by them. When I left the symposium that day, I felt like a million bucks. A palpable shift occurred within me that was rather unexpected. You, and the IHHS, GET IT. And you got me. April 30, 2011 was more than just a CME symposium and an opportunity for treatment. It was about validation, courage, strength, and being seen and physically touched by all of you without having to worry about what you thought of my sweating. Maya Angelou once said, “Beauty and strength can be found in adversity.” I thank you deeply for helping me on my way to find mine.
Copyright © 2011 My Life as a Puddle
Hi. Thank you for taking the time to read my blog. This is a first for me–living my life out loud and online–so please be gentle. I do appreciate constructive feedback, though. Until I am more comfortable in the blogging world, I will be posting everything using the pen name My Life as a Puddle.
So, what prompted this blog? I had been thinking about it for awhile but was further convinced I should step out on faith after 2 incidents occurred. 1) I applied to be in a prestigious memoir writing workshop. Over 60 applications/manuscripts were received; out of the list of students that had to be capped at 12, I was #13. So close, yet so far. Had any of those students canceled, I would have been in! My manuscript is titled Caught Between Jane Austen & Twitter: A Manuscript on the Lost Art of Letter Writing. Some of the comments from the review panel included: sincere, unique format, good mass market appeal, intriguing idea. A friend of mine said 13 is a good number to be, as it’s right on the precipice. She also said to keep my ears to the ground and be open to awareness. She thought my manuscript could be the beginning of something else, like teaching others how to chronicle the lives of those important to them via the art of micro-writing a thank you letter. My friend is very wise, and things are unfolding just like she said they would. (More about the writing blessings coming my way in a later post.)
2) I attended a Continuing Medical Education (CME) symposium on hyperhidrosis a few months ago where I was fortunate enough to receive free Botox treatment for my palmar hyperhidrosis (I also have plantar and axillary HH). While the Botox only worked for a short period of time, I walked out of that symposium feeling like a million bucks because I had conquered my fear and endured approximately 160 needle injections. In. My. Hands. So even if it didn’t work, I knew I had done something really big for myself and could be my own best advocate for my health. In addition to conquering my fear, the entire symposium was complete validation for me and the way my body works. For the first time in my life, I stood in a room and could do exactly what I was supposed to be doing, which was sweating. The International Hyperhidrosis Society GETS it, and they got me. The physicians and nurses who administered the Botox treatment said I had the best case of palmar hyperhidrosis they’d seen all day! For once, I could be proud of my sweat. Those people, in that room, on that day, changed my life. So how could I not walk out of there dreaming about blogging so that I could further begin to live my truth? (Again, more about this story later.)
So, that’s it for my first post. Please bookmark my page and come back soon. If you have any questions/blog topic ideas/general feedback, please comment or contact me. I have a Facebook page that I’d love for you to “like” (Hyperhidrosis—My Life as a Puddle), or you can email me at firstname.lastname@example.org.
Copyright © 2011 My Life as a Puddle