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Margaret Shepard (@margieshepard) published a blog post · December 10th, 2012

Surgery cures rare condition

Lindsey Fleener

Photo courtesy of Lindsey Fleener

When Lindsey Fleener was young, she struggled playing the piano. It was difficult for her to do penmanship. She could barely hold a bat in physical education. The monkey bars were impossible at recess. Lindsey didn't have a learning disability. She wasn't handicapped or physically challenged. Lindsey had a condition that elicited excessive perspiration — hyperhidrosis — causing her hands to sweat profusely.

More than an annoyance

"As far back as I can remember ... I had this problem" recalls Lindsey. "I'd leave puddles on the piano keys and soak through my writing and drawing paper. And no other kids ever wanted to hold my hand crossing the street."

Lindsey's parents realized her hands were sweaty, but attributed it to being active and having an elevated metabolism. Her doctors recognized it as an annoyance, but something she'd likely outgrow. But as Lindsey grew older, the problem didn't subside. "Instead, it became an obstacle to many things that adolescents and teenagers usually enjoy," recalls Lindsey.

"A whole quarter of phyed during my sophomore year in high school was devoted to all types of dancing," recalls Lindsey. "I continually apologized to my partner for having to hold my sweaty hands." And Lindsey scarcely dated through high school because she was too embarrassed. She knew any nervousness would only make the condition worse and it often wasn't worth the risk. "Dances, proms and homecoming events weren't a real joy," she says. "I'd avoid holding anyone's hands, which made dancing, coronations and photos very awkward."

"I attempted a part-time job at a jewelry store. I had to work with small pieces of metal and stones. I loved the work, but the excessive moisture on my hands made it so embarrassing to pass a piece of jewelry to a customer," recalls Lindsey. "Unfortunately, I quit."

Finding an answer

While still in high school, Lindsey serendipitously watched a health clip, part of the local evening television programming. "They addressed my condition and how there was a surgery to help," she says. "The procedure involved removing the nerve that causes peripheral body sweating. One of the side effects of the surgery was excessive trunk sweating and after what I had grown up with, I thought 'no thanks.'"

But as Lindsey grew older, her condition prevented her from doing necessary things. "I didn't want to meet people and shake their hand," she remembers, "so I just avoided doing it." She found herself growing rude and ashamed. This avoidance behavior started wreaking havoc on her self-confidence and self-esteem.

Lindsey's father knew a woman whose mother worked in Rochester, Minn. The family friend suggested that Lindsey consider making the short trip from southeastern Iowa to Mayo Clinic in Rochester to see if something could be done for her condition.

"Lindsey's condition is rare and she had a severe form of the disorder," says John Atkinson, M.D., a neurosurgeon at Mayo Clinic in Rochester. "Hyperhidrosis isn't a life-threatening condition, so it's often not taken seriously from parents' or family physicians' perspectives."

"The cause of hyperhidrosis is not well understood," says Dr. Atkinson, "and at Mayo Clinic in Rochester, we see an average of only 10 cases per year." While the exact cause of the condition isn't known, it is well understood that the sympathetic nerve chain causes the disorder.

Type I hyperhidrosis — Lindsey's form — causes increased sweating of the hands, feet, armpits and/or head. Type I is not associated with other diseases, such as hyperthyroidism or diabetes, which can also cause excessive sweating.

"Perhaps the body's thermostat malfunctions or there's something systemically wrong at the spinal cord or ganglia level, but medical science hasn't revealed the exact cause," adds Dr. Atkinson.

Fortunately while the cause has not yet been identified, a treatment exists. "The corrective surgery involves severing the sympathetic nerve chain into the hands. It's very successful and diminishes the complications of increased sweating in other places, which may result from removing the nerve," says Dr. Atkinson.

Dr. Atkinson performed a procedure on Lindsey called endoscopic transthoracic sympathotomy, which was pioneered at Mayo Clinic. The procedure removes most, but not all, of the sympathetic nerve chain running down each side of the body behind the lungs. It takes only 10 to 15 minutes per side.

"Mayo Clinic also has active nerve conduction studies under way and has conducted sweat tests and blood flow studies at the time of surgery to better understand hyperhidrosis," notes Dr. Atkinson.

Mayo Clinic also is testing Botox as a nonsurgical treatment for hyperhidrosis. A purified form of the botullinum toxin, which is produced by the bacterium that causes food poising, Botox, when injected in small doses to specific muscles, blocks chemical signals that cause muscles to contract.

Getting on with life

After her surgery, Lindsey has had no increased primary or secondary sweating. She has returned to college at the University of Northern Iowa, majoring in Elementary Education. She has a boyfriend and works part-time at a restaurant, serving wine to customers.

"I'm handling bottles of expensive wine, corkscrews and fine crystal with confidence," says Lindsey. "These are things I would not have even attempted before my surgery." And, while having a boyfriend at age 23 might not seem significant, it is to a young woman who was often reluctant to even hold hands.

"I liken this condition to gnarly teeth, which hampers a person's smile," says Dr. Atkinson. "When you smile, you feel happy and pleasant. A situation that causes you to laugh or smile shouldn't end up making you unhappy to show your teeth. This surgery is similar to orthodontic treatment, which gives a person the freedom to smile without embarrassment."

Lindsey now does the things that bring her happiness and make her feel good about herself. Her decisions and activities are no longer limited by her condition. "Life is good," says Lindsey.

excessive sweating Hyperhidrosis John Atkinson Lindsey Fleener Mayo Clinic

 

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roechelle (@roechelle) · Sep 23, 2013 · #

First of all, I hope to find some answers to my questions...... I had the ETS done 8 years ago. I was so happy to finally rid of the struggles I've had due to hyperhidrosis. Unfortunately, as time goes by. I have started having and experiencing the HORRIBLE side effects of the surgery. My life is about 25% of what it used to be and I suffer every second of the day. Doctors think I'm crazy cause of all the health issue I've had.....people think I'm hypochondriac......
I am also without an insurance so I am not able to have other doctors see me. In the past 8 years since the surgery, I have seen 3 doctors but no one has really met someone like me. I have attached some of my research and I am just hoping and praying that someone see's this email and maybe...just maybe....I could get some help....

Here are some of the side effects
1. Severe compensatory sweating
2. Decreased physical capacity
3. Reduced blood circulation
4. Postural hypotension
5. Sleeping problems
6. Anxiety
7. Chronic back pain
8. Shortness of breath
9. Inability to loose wait
10. Dry sinuses
11. Sweating of the body at night
12. Split body syndrome/Corposcindosis
13. Total anhidrosis ( inability to sweat)
14. Chronic fatigue/lack of energy
15. Cold hands and feet
16. Sensitivity to food
17. Recurring UTI

dbf89e939e-Hyperhidrosisisexcessivesweating.docx

Polly Gilgenbach (@pollyg) · Sep 26, 2013 · #

Thank you for your note. We are sorry to hear of the difficulties you are having. Unfortunately, we are unable to provide second opinions or make treatment recommendations through this correspondence. You may be able to find additional information on our website at mayoclinic.org.