My HH story

Introduce yourself and share your personal hyperhidrosis related experiences.
slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

My HH story

Postby slovenec » Sun Jan 27, 2013 3:19 am

Unfortunately both my father and my mother suffer from palmo-plantar HH. My mother's HH is moderate and my father has a really bad case of plantar HH. Therefore, I and my sister had very poor chances for escaping sweaty palms and feet. Interestingly enough, none of my grandparents and none of my aunts, uncles, cousins and other relatives has the same problem. My sister's HH is comparable to my mother's sweating. A really bad combination of HH genes caused horrible, constant and excessive sweating of my palms and feet for as long as I can remember.
I was born in 1972 and a large part of my childhood was influenced by constant embarrassment. Even when I was alone I couldn't relax properly as the sweating was ruining everything that I held in my hands. I had to wash my hands religiously, shower several times a day, change socks and shoes. You can imagine the impact of constantly dripping palms and sweaty feet on my social activities and relationships. The doctors told me that that there was nothing they could do to help me. In those days in a socialist country it was impossible to buy even a decent antiperspirant.
When I started working in 1993 I was able to buy some antiperspirants from abroad, however, they were useless. When I started using internet in 1997, it was a true revelation when I found an internet site written by an Italian doctor, who claimed that he could cure palmar HH. You can't imagine my enthusiasm and the relief when I finally found out that there was a possible end to my problems. I had an extensive communication with the Italian surgeon. In several consecutive e-mails he told me about all problems that could follow the ETS. Before the final decision I visited a neurologist and a dermatologist in my home country. The dermatologist was somehow uninterested (he wondered how I could be bothered by such a trivial problem) and the neurologist supported my decision after completing a series of tests (which were all useless, but showed that I am otherwise perfectly healthy). I still remember asking dr. Tarfusser a few minutes before the surgery about the possible unbearable CS following ETS and how I was shaking when he again sincerely answered that there's a certain percentage of people who suffer really badly from CS after ETS and regret the surgery for the rest of their life. I decided for the procedure anyway. The surgery was very simple, there was absolutely no pain afterwards, I left the hospital on the same day and I even visited a large amusement park near Verona on the next day. I had no CS and I was one of those lucky people whose plantar HH improves significantly after the surgery.
The CS started more than a year after ETS. It was somehow benign in the way that it was not present unless I was physically active or the weather was warm & humid. I am a teacher and it was often unpleasant that I had to change two or three undershirts in the course of two or three lectures. However, I was so ecstatic about my dry palms that I considered it an acceptable pay-off. After a few years my plantar HH started to get worse. Luckily, there were some new options available. I started buying a combination of AlCl and salicylic acid from Canada, a very strong 30% antiperspirant from Austria and using a Drionic machine. A combination of rather lengthy and unpleasant treatments prolonged the period of my reasonably dry soles.
About 10 years after the surgery CS started fading away and now, 16 years after ETS, it is almost non-existent. I still sweat much more that my partners when playing squash or badminton, however, I consider it "normal" and socially acceptable. Also, I often get sweaty while sunbathing, however, I can always dip into water an cool myself. CS doesn't bother me at all anymore.
Unfortunately I find it more and more difficult to control my feet sweating. Even if I follow my anti-HH rituals, the results are unpredictable. The feet can be almost completely dry for two or three days, mildly sweaty for another few days and then dripping with sweat for another few days. Fortunately I have an access to medical journals and I've been following the articles about HH for the last 15 years. In the last few years I was surprised to see that the strong opinion against lumbar sympathectomy has changed significantly. After some careful considerations and talks to two neurologists I decided to have ELS at the end of this April. I know that this is a risky decision. However, 41 years of constant problems and embarrassment, a positive experience with ETS, several positive results in the medical literature and communications with people who already had ELS assure me that there's a great chance that the effect of ELS on my body will be positive.
I will keep you informed about the results.
Last edited by slovenec on Sun Nov 08, 2015 1:49 am, edited 2 times in total.

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

Re: My HH story

Postby slovenec » Sat Apr 13, 2013 11:51 pm

I just returned from Merano where I had lumbar sympathectomy.
It took about 5 hours to drive from Ljubljana to Merano. Merano is a charming old Austro-Hungarian town in the NE part of Italy with an unusual Mediterranean climate. We found a nice and reasonably priced hotel very close to the clinic St. Anna.
After a good night sleep I checked in at the clinic at 9 AM. I had to fill some forms. Afterwards I had a very long talk with dr. Tarfusser. He is a very kind, sincere and unusually modest person. Although I read probably all medical articles about ETS and ELS which are available on PubMed, he told me many new interesting facts about HH, ETS and ELS which he discovered during his 3000+ sympathectomies. Afterwards I had an exam with the anesthesiologist. A very energetic nurse from Peru took some blood samples and recorded my ECG. Then I had to put on a rather embarrassing surgical gown and compression stockings. We had a good lough when the only English word she could find to describe the situation was “Beautiful”. Then she wheeled me into the operation room.
The first thing I noticed was a relaxing 1960s hippy music. There were at least two nurses, the anesthesiologist and the two surgeons: dr. Tarfusser and dr. Guidiceandrea. I lay on the operating table, my arms were stretched and I was covered with a strange blanket connected to the source of hot air. We had some chit-chat about the choice of music and then I fell asleep.
I woke up in my hospital room with warm and dry feet. The nurses checked my blood pressure and I had I short talk with the surgeons (which I do not remember). I found three small scars on each side of my body between the last rib and the hip bone. After about 20 minutes I started functioning normally. The nurses kept checking me. About two hours later I woke up and used the toilet. A little later I had lunch. Then, dr. Tarfusser arrived and we had another long talk. The surgery was a little more complicated then normally. As a result of regular heavy exercise I have a very large psoas muscle and many large veins covering the ganglia. The surgeons managed to find the ganglion which is responsible for the sweating of the feet and to clip it from above and below regardless. It is interesting that the ganglion on my right side was normal and the ganglion on the left side was huge.
I should have spent the night in the hospital, but I asked dr. Tarfusser if I could spend the night at the hotel. Seeing how well I was he reluctantly allowed me to leave the hospital.
The next day I saw dr. Tarfusser again, paid for the surgery and we again had a long talk. He told me many interesting fact about the evolution of the ETS surgery. He is probably the only surgeon who doesn’t just cut a part of the sympathetic chain from one rib to another. He always identifies the ganglion and thus achieves very good outcomes.
Last edited by slovenec on Thu Apr 18, 2013 2:26 pm, edited 1 time in total.

superyou
Posts: 69
Joined: Tue May 30, 2006 8:03 am

Re: My HH story

Postby superyou » Tue Apr 16, 2013 5:56 pm

Great post, thanks.

You didn't write much about the actual results of the surgery. Are your feet totally dry now?

-Robert

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

Re: My HH story

Postby slovenec » Wed Apr 17, 2013 9:29 am

The feet are warm and dry. In about a week I will play a match of squash and in about 3 weeks I will visit a sauna. Then, I'll be able to give a definite answer if the feet have the ability to sweat at all.
My palms did not sweat at all for about 6 months after the ETS. Then I was able to notice minimal sweat in the area around the small finger in extreme conditions. Now my palms sweat like they are supposed to: usually they are dry, but they can get sweaty if I exercise heavily.

superyou
Posts: 69
Joined: Tue May 30, 2006 8:03 am

Re: My HH story

Postby superyou » Wed Apr 17, 2013 10:31 am

That's great. Congratulations on this success!

I'm guessing your feet will sweat "normally" like your hands (as is the case for me also - I had ETS surgery).

I wonder will there be compensatory sweating?

What convinced you this surgery was worth trying now?

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

Re: My HH story

Postby slovenec » Wed Apr 17, 2013 11:37 am

At the moment the compensatory sweating is the same as it was before ELS. The articles that I read say that this is the case in most patients who had ETS before. But, you can never be sure. My CS appeared more than one year after ETS and significantly decreased about 10 years after ETS.

I must admit that my palmar HH was so bad that I wasn't able to live with it and that my plantar HH was although horrible and embarrassing somehow more manageable. Before ETS my plantar HH was a part of the same problem: the feet started and stopped sweating at the same time as the palms, the intensity was about the same, and unfortunately, they were not influenced by the heat or by stress. The sweating was usually constant from the moment I woke up to the moment I went to bed. I managed to prevent bad smell and completely wet feet by using 30% solution of AlCl and iontopheresis. The treatments were very unpleasant and time consuming, but, they usually substantially dried the soles of my feet. The results were visible if unpredictable.

I must say that I was at first horrified by the idea of ELS. There was a theory that ELS almost necessarily causes impotence and retrograde ejaculation in men + some other terrible consequences such as urinary incontinence. However, I later found out that these side effects were caused by open sympathectomies on very old and very sick people where the sympathectomy was the last measure tried before the amputation of the lower limbs. Also, the sympathectomies were extensive (L1-L5) and a lot of other structures and veins were damaged during the surgery. Together with this operation they usually made some vein bypasses and thus caused additional changes to the blood and nerve supply of the ***.

About two years ago I found and article written by some Brasilian and Austrian doctors where positive results of ELS after ETS were presented on a large group of people including men and women. I was sick and tired of iontopheresis and AlCl which in the last years started losing their effect. For example, after many years of reasonably dry feet wearing flip-flops became almost impossible again. At the same time I paid the mortgage for the apartment and I was able to start saving for the surgery. Then, I wrote an e-mail to dr. Tarfusser who assured me that the ELS became a standard procedure at their clinic, that he's been doing it for the last 7 years, that in his experience the ELS causes far less side effects than ETS, and that ELS after ETS is not a problem at all. We had two very long telephone conversations afterwards. I visited two neurologists in Ljubljana and a thoracic surgeon who performs ETS in Ljubljana. Both neurologists supported my decision and the thoracic surgeon even admitted that dr. Tarfusser helped him with useful info about the sympathectomies of lower T levels. I also found out that the ELS is a rather complex surgery and that two surgeons are necessary. I was positively surprised when I found out that the other surgeon is a very experienced and respected surgeon dr. Guidiceandrea. I also knew that dr. Tarfusser is one of the few surgeons who clips/cuts the actual ganglion and not only a part of the sympathetic chain between two ribs. The location and the number of lumbar ganglia is extremely chaotic (from 1 to 8, usually not related to the number of the corresponding rib) and I wanted to be completely sure that L1 and L2 are left intact.

Afterwards, the decision was easy. It was a very positive experience and I still cannot believe that I got rid of the horrible sweating which had so many negative effects on my quality of living, my behaviour and my personality.
Last edited by slovenec on Thu Nov 21, 2013 3:42 pm, edited 1 time in total.

admin
Site Admin
Posts: 355
Joined: Wed Dec 31, 1969 5:00 pm

Re: My HH story

Postby admin » Thu Apr 18, 2013 11:26 am

Slovenec, just read your updates and am very happy for you! I updated my ELS page to link to this very helpful thread.

I am sure you will update this thread down the road, and hopefully you will not get recurrence like Chris did with Dr. Reisfeld. Did Dr. T mention the cost of a re-operation?

Funny that Dr. T and Dr. G now work together. A few years ago, both e-mailed me and Dr. T. was quite unhappy with Dr. G about various issues. From what I hear, Dr. T is usually extremely professional so it must have taken a lot for him to complain to me about Dr. G.

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

Re: My HH story

Postby slovenec » Thu Apr 18, 2013 2:22 pm

I sincerely hope that there will be no recurrence in my case. Dr. Tarfusser told me that unfortunately this would be possible if the body found a way how to send signals to the feet through other channels. He did say that they changed the ganglion which they clip and thus they are able to achieve much better results. We did not talk about the re-operation. However, I must say that he is a true gentleman and not one of the greedy ETS surgeons. In 1997 I was very poor, coming from a former Yugoslav republic and had a really terrible problem with palmar HH. When we discussed the price he set the price very low (about 1/3 of the price charged by other surgeons) without asking him to do so. Even now, when my financial situation is much better, the price was more than reasonable and again several times lower than Reisfeld's price.
I know nothing about disagreements between the two doctors. They seemed to be friends. Dr. Guidiceandrea also seemed a very warm and caring person. After the surgery he had a long talk with my partner and told him all details about the surgery.

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

Re: My HH story

Postby slovenec » Sun Apr 28, 2013 7:54 am

Last week I played several intense matches of squash and badminton and I also ran a 15 km distance. My physical abilities are the same as before and the CS stayed the same. Also, my heart rate and my blood pressure have not changed. My sweating is usually at its peak immediately after a heavy exercise. All parts of my body sweat normally but the face and the feet below the ankles. My arms, the head and the skin between the left ankle and the knee sweat less than other parts of the body.
5 out of 6 scars are have already healed well and the sutures in the last scar got a little inflamed. After removing the inflamed sutures the last scar is healing nicely.

graydwarf
Posts: 26
Joined: Thu Aug 16, 2012 5:27 pm

Re: My HH story

Postby graydwarf » Mon Apr 29, 2013 7:47 pm

Thanks for sharing your story. I like knowing that surgery isn't as scary and that I have it as another option.

greene57
Posts: 4
Joined: Tue Feb 04, 2014 11:58 pm

Re: My HH story

Postby greene57 » Wed Feb 12, 2014 4:03 am

Really appreciate your story Slovenec. In addition to ETS (side effects told in another thread), I had an open lumbar sympathectomy as well. It's been nearly 20 years later. Right foot completely dry. The instep of my left foot can sweat/drip. Local doctor said that the surgeon probably didn't cut enough regarding the sweating on the left food (I was cut, not clipped). Per my other post about ETS side effects, I experience a lot/severe compensatory sweating (neck and trunk), but I have no regrets because having dripping hands and feet (surgeon classified me as an extreme case), made living any kind of a normal life almost impossible. The major side effects with the open lumbar sympathectomy is numbness around the top of my thighs - I can pinch my skin and feel nothing, but this had no effect on my life whatsoever. The other side effect is sweating, often profusely, around the groin area, but again, I'll take sweating anywhere other than my hands. I probably could have lived with sweaty feet but it's been fantastic to wear whatever shoes I like whenever I like. I don't regret my surgeries but I wish there was/is an easier way with no side effects for all the people who suffer with this insidious and embarrassing condition that no one other than the sufferers could possibly understand. It took until I was 25, after visiting over 20 doctors, to be finally diagnosed. I am the only person in my family line/extended family that suffers with HH. I assume it skipped a whole - possibly two generations - and that I was the unlucky one.

admin
Site Admin
Posts: 355
Joined: Wed Dec 31, 1969 5:00 pm

Re: My HH story

Postby admin » Mon Feb 17, 2014 2:11 am

Greene57, that is a great story. Please post it in the ELS section of the forum too in your own new thread:

viewforum.php?f=39

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

13 months post ELS update

Postby slovenec » Sat May 10, 2014 6:09 am

I am happy to inform all forum members that 13 months after ELS the situation is exactly the same as the day after the surgery: the feet are still dry, the CS is the same as before ELS and there are no other side-effects. Chris had a relapse about a year and a half after ELS, so keep your fingers crossed.

graydwarf
Posts: 26
Joined: Thu Aug 16, 2012 5:27 pm

Re: My HH story

Postby graydwarf » Sat Jun 28, 2014 12:12 pm

Happy for you slovenec. I'm about to try the Ultherapy approach. Just posted an update on my starting story post. Keep us posted as it's truly uplifting to see the success story and to know we have options.

slovenec
Posts: 52
Joined: Sun Jan 27, 2013 2:19 am

Re: My HH story

Postby slovenec » Sat Apr 11, 2015 2:38 am

I am happy to report that the ELS seems to be a complete success. The feet are still completely dry 2 years after the ELS and the CS remains the same.


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