“Birks”, by Melissa

Recently a reader and subscriber contacted me wanting to share his story.  It is fascinating: having undergone ETS which resulted in severe Compensatory Sweating, he has been on a journey to find further treatment.  He has had some success, as you will read, but he also has encountered many bumps along the way.

We all hope to find acceptance.  When we find the courage to seek the advice and support of others who also suffer from hyperhidrosis, the hope is that we will be embraced.  As you will see, Dan has (and I have!) encountered fear and anger amid some of the forums.  We all have a story.  Here is Dan’s:

I’ve had hyperhidrosis since early teens. Started under the arms, then moved to hands and feet– underarms went to normal (1980).

Like you I just thought I was a freak till age 31 (1991) when I saw my first Neurosurgeon. He injected a giant needle down through the front of my neck to my spine…don’t move he said..yeah right!  Anyway he injected a Novocain-like substance onto the ganglia near T2 and T3. I stayed dry on my right hand for 1 hr, cost $900; insurance would not pay. I had just recovered from a motorcycle accident and had damaged those areas (T2 and T3) slightly with hairline fractures. My HH had worsened after the bike crash quite a bit and the doctor thought there may be a correlation.

My hands never dripped but my feet did during karate practice in college. He told me about a very invasive surgery that was done on some actors. I was in LA at the time, having moved from New England. I chose to live with my condition for now, but felt like there was hope.

Things got worse in my thirties and finally in my forties I found these procedures online being done, ETS, non invasive, great results, little risk of any side effects. I saw Dr Reisfeld in LA and he agreed to do the surgery.  My insurance, Blue Cross, agreed to cover but suggested I chose a doctor in their network, so I did. Dr Baumgartner. Reisfeld did the clamp method, Dr Baumgartner only did the cutting as he assured me only 1 person in 700 so far ever wanted it reversed (2004).  I believed him.  As a matter of fact he still tells patient this.

Within a few days I started sweating at night profusely and a couple weeks later it started up during the day. Over the next 5 years it progressively got worse. I sought help.

I spoke with Dr Reisfeld about his new grafting technique (2008). Results were poor and my insurance would not pay (they still pay for cutting though). There is also the risk that you can end up with both CS and your old condition, as some have experienced from grafting.

I then found Dr Duarte in Brazil. We spoke for a couple years over the phone and by email about a procedure he had developed to alleviate sweating in the torso. I needed my records from the original surgery and had a very hard time getting that. I also had a hard time getting any of these doctors to speak to each other. These days it seems they’ve all gone on their own, and don’t share discoveries or ideas any longer… a common problem in modern for-profit medicine.

The procedure was a success (June 2010) and I’m awaiting Dr Duarte’s second procedure if necessary to alleviate the sweating below the waist; sometimes it’s less sometimes it’s more…. He wants to see how it evolves over time first, as he has varied results, and was honest with me about that. I also spoke with former patients who had different degrees of sweating remaining below the waist.

I’m also talking with Dr Thorpe in England about a technique he has that has had some positive results for CS, but results are varied.

I’m determined to fight this as my quality of life ticks away ever day. Having my upper body fixed really makes me want to get all the way back.

I sweat from the head and slightly under the arms. I’m very athletic and climb every morning. I believe my introduction of eating spice before exercising for a few years induced the head sweats. I also sweat all over in a sauna and have read that others do as well, leading me to believe in a secondary system in our bodies.

Like you, humidity is my enemy, as is my mind. I believe the sensation of wetness on the skin triggers more sweat with someone suffering from CS. If I splash water on my face in the sauna it starts to sweat, same with other body parts. Dryer air, a low dew point really makes a difference more than temperature.

I’m glad I found your site, you’re an honest and helpful person. I had been in a couple forums and as soon as I mentioned additional surgery a witch hunt ensued and I was digitally tarred feathered and labeled an “agent” of these doctors, or I was just plain censored. So much rage and other negative emotions comes from this plight of ours. I think it stems from years of hiding and feeling different…even from childhood discomfort of having “wet diapers” So much fear, you spoke of it so well in your handbook Miss Conaghan, thank you for that.

I’ve been thinking of starting my own forum and disallowing any crosstalk so people can express their stories without fear of criticism (something that make us sweat more!). Even the International Hyperhidrosis Society has sort of “disowned” us.

I also am trying to bring some of these doctors together like Duarte, Reisfeld, and Thorpe to share all their patient experiences in some sort of anonymous database. HH and CS are such an enigma one that can be solved by sharing information. Thank God for the Internet and for people like you.

I would like to thank Dan for his courage in telling his story.  I do need to state that I am publishing Dan’s words and experiences and do not endorse or have an opinion, negative or otherwise, about any of the individuals his story names.