Wednesday, June 26, 2013

Welcome to My Nightmare

by Britton Johnson


I am a Single, Caucasian, Male in my thirties that had ETS by Dr Reisfeld approximately March of 1998. I had cuatory of the T2. I am a pilot for an Airline in the United States. I have a degree in Business and Sociology. I have always been extremely fit and successful in athletics. I was ranked number one in the USA in two swimming events when I was in age group swimming, then State champion and holder of 7 records in High School. Later, I went on to swim under scholarshp at a major NCAA Division 1 college finishing top in the conference. I point this out to let you know I am very in touch with my body. In reaching for maximum performance I have always played it very conservative with regard to what I put into my body (used to avoid even taking aspirin) and how I treat it. If so much as a freckle were to show up on my lower back I would know about it. Later, I will contrast my previous good health with where I have arrived after ETS. Of course the question begging to be asked is if I am so sensitive to anything potentially harmful to my body why did I get ETS.

It all started sometime back in 1996 when I happened upon a talk radio show while driving in my car. A so-called authority on medicine was taking calls and somebody called to ask about an overactive sweating problem. The 'Doc' quickly labeled it as hyperhidrosis and said that there were procedures that could easily cure this problem. I jotted down my newfound word 'hyperhidrosis' and decided to look into it when I got back home. I, in some stressful situations, when it was warm in the room, had been know to start sweating profusely from the face and if my face was sunburned I would blush easily. I did a search on the Internet under 'hyperhidrosis' and came up with a small handful of doctors web sites (nothing like this site had yet immerged). At the time Dr. Reisfield’s site indicated in a nutshell that he had more experience than most the other doctors in this field in the United States. I called and was greeted by a friendly receptionist that was all too happy to send me some literature.

The literature, just like any good marketing package started immediately into the benefits. This followed with testimonials of some former patients. I specifically remember two guys telling of blushing/sweating prior to surgery then after this "minimally invasive procedure" going out to test their new found cured self. One gentleman unabashedly talked of walking up to a beautiful woman and saying something embarrassing that would normally cause him to blush but this time he was all giddy inside because that blushing problem that had previously caused so much trouble was gone, vanished, magically removed and all from a thirty minute procedure on each side.

It sounded like this surgery was extremely safe (how much damage could a little ol thirty minute procedure do anyway) and it targeted only this specific troublesome nerve that just got carried away some times and wasn’t working like a normal nerve should work anyway. Wow, this seemed too good to be true (just remember if it seems too good to be true!!) I talked to the doc over the phone several times and other than the short list of side effects (kind of like the small print at the bottom of advertisements that nobody reads) this surgery sounded safer, with a better chance of positive outcome, than when a podiatrist removes a bunion from someone’s big toe. At least that was the impression I, and I’m sure many others were left with after an initial consultation. If I had read one post by Magnus Carlson, or 'Steve Austin' or any of those people that have not faired so well (by the way I do believe only a fraction of the dissatisfied ETS’ers find their way to this site contrary to what has been speculated by other posters here) there is NO WAY IN HELL I WOULD HAVE TOUCHED THIS SURGERY WITH A TEN FOOT POLE!

I do not believe my side effects are as bad as some I have read about but for me it has still been very disappointing watching me, Mr. Healthy, begin to crumble physically and not be able to carry out activities that used to give me so much joy and made life fulfilling (more on this later). I would also like to point out that I did ask Dr. Reisfield if there were any new procedures on the horizon and if it would be worth waiting. He said no and that this was an established procedure that had been successful. I have not yet asked him but I do not believe it was that many months later that he shifted to the clamping method (still not a good idea in my opinion but better than cutting/cauterizing).

I must say I am disappointed with Dr. Reisfeld because most of the info he provided (including a handful of recently cauterized patients that had little time to show much side effects - they were still at this point saying it seemed worth it) suppressed the real possible dangers. Even when such things as Horners were discussed it was quickly pointed out that he had done X number of patients and only one Horner patient had shown up, "very rare". That is not to say that Dr. Reisfeld isn’t friendly because he is. I just don’t believe he was up front as he should have been and it would have given me a more 'fair and balanced' education and had he dispensed numbers to me of those who I’m sure he had talked to who were unhappy with the procedure I probably would have taken a different course of action. I believe there are surgeons who push the procedure more than Dr. R. and are counting the beans it will take to buy that next house, yacht, etc. more than he. Doctors, even those who get started with the right intentions (to help their fellow man), often times fall into this trap (read the book Off the Pedestal). I know of an incompetent plastic surgeon that pushed many people to have procedures that he should not have performed. In a nutshell he visible screwed them up for life and one of them got so distraught and angry that they took the life of the surgeon.

I will follow this post with another installment listing the backward trend of my health, where I am at now, what I have done to tolerate the many (not just Compensatory sweating) side effects and where I am thinking about going from here. Btw, I pointed out that the side effects are not just Compensatory sweating because some of you eager to get this procedure seem to think that a "a little extra sweat on your back is a fair price to pay for no more blushing/sweating". The C.S. usually is only the beginning and you should talk to those who STILL have blushing with a whole list of new ailments. Kinda hard to stop and smell the roses when your getting beat over the head with unnerving (no pun intended) side effects. For now try sticking a rusty nail in your eye and twisting it for a while, then try simultaneously concentrating on a thought or idea outside of yourself or perhaps giving all your attention to that loved one that has come to rely on your support.

Where do I begin? In a nutshell, I went from a motivated, spirited high achiever to a dull, lifeless shell of myself. Don’t get me wrong, I am still a fighter and I will fight and do everything in my power to get back as near my former self as possible but it is difficult and discouraging to deal with the side effects associated with ETS. Though I cannot accurately describe how ETS has changes my life I will try to give an open and descriptive evaluation of how it has affected me these past three years. Those of you with similar problems will hopefully relate and know that you aren’t the only one going through this.

My first post under this heading already described how I arrived at ETS so I will pick right up with my experience after 'going under the knife/burner'. Right after the surgery I had severe CS that many have mentioned. For several weeks I literally had to get up several times a night to change my sweat soaked clothes and I would put towels on top of my bed to keep from soaking the sheets and mattress. If I took a warm shower or bath (used to love a good bath) forget about it!! The elevated body temperatures only further fueled this sweating phenomenon. Three years later the night sweats are still sometimes there but not as bad, perhaps because I have adjusted my lifestyle to accommodate it better. Now if the room gets warmer than aprox 70 degrees the sweat starts streaming. I used to like curling up in a nice warm bed sometimes with an electric blanket turned all the way up but now I have to keep my house/ hotel room like a refrigerator to keep from creating a sess pool of sweat. As I’m sure many of you have discovered, the idea of another warm body nearby can cause an anxious situation. I am not married and for personal religious reasons wont be having 'relations' until I am married. It is sad that the idea of sharing a bed with my future mate causes me much concern and instead of really looking forward to it, as I should, I think of the whole experience with a black rain cloud hovering overhead. I will have to explain this whole situation before honeymoon night, a burden that frankly I could do without. Unfortunately CS is just the tip of the iceberg regarding side affects associated with my ETS surgery. Below I will recount some of the other side affects as they were noticed after ETS and how they affect my daily life.

Along with CS encountered during sleep I have also experienced a healthy dose (no pun) of CS at work. Often times I will need to get into an aircraft that has been unattended for several hours and the cockpit will be quite warm. After firing up the Auxiliary Power Unit and getting some AC going my body sometimes wont cool down and the sweat will not have stopped over an hour later. My lower back and legs are usually affected the worst and when covered with sweat I will sometimes lean forward to keep my shirt from sticking to the back of the seat. No doubt more than a few Co-Pilots have wondered what I am doing. At least when I used to get a little sweat on my face I could blow the air from the gasper fan directly on my face and cool it in seconds. The lower back covered with clothes is another story. Anyway, you get the idea on the inconveniences on CS. GS, that is Gustatory Sweating (which I was told was very rare), has caused major changes in what I eat, when I eat and generally my quality of life. My whole sense of smell is now hyper sensitive. I guess if I were a bloodhound this would be a good thing. Unfortunately now 90% of all scents that I used to enjoy cause all kinds of problems. If I am on a date and a girl wears even a minimal amount of perfume my eyes go crazy with irritation, I can get a headache and generally I am more focused on staying away from what has now become an allergen than getting close to the girl. After dating a girl for a while I have requested that they not wear heavy perfume and though they no doubt think I am really strange for making this request, if they are nice they will go along with it. Speaking of allergies, this is the one thing that pesters me night and day. At least if I get into a room of optimal temperature the CS will be put at bay for a moment. The allergies that I NEVER had prior to this surgery started out relatively mild along with the GS but have progressed to something that now sometimes seems unbearable. Can I just say that my eyes, even as I write this, are itchy and constantly burn! They either seem too dry or are so watery that I have to use tissue to periodically dry the outside of my eyes. I had no idea when I had this surgery that the sympathetic nerve chain was so strongly tied into the functioning of all the glands (i.e., pituitary, thyroid, adrenal, etc.). About one year after my ETS I got a little cyst on the left side of my neck that grew to the size of a marble. I went to two dermatologists that basically said these things appear when the glands are doing weird things or are over/under producing. I believe that as a result of the glandular changes tied to ETS I got that cyst and this disturbance is also responsible for the sudden appearance of severe allergies. By the way I have tried everything including OTC and prescription allergy medications and some have helped a little but my eyes are almost always irritated and this can understandably make me irritable. Oh yea, its always fun trying to help an allergy doctor, dermatologist, GP, etc understand how the damage to your nerves ties into the side affects you want them to treat and why your nerves are damaged. Damage control is getting old but this is my body and life as long as I remain on earth so I’ll press forward. But I digress. I now know that the production of cortisones from the adrenals play a big part in allergies and I just recently started taking an adrenal booster, which contains Adrenal (bovine), Siberian ginseng, licorice root. Apparently Licorice root has long been known to help boost production of the cortisones from the adrenal gland and I may experiment more with it. Also I will be looking into the combination of herbs suggested by the website Madonna posted. By the way, the adrenal boost formula has seemed to help my burning eyes a little.

I think I am getting a little ahead of myself. I forgot to mention that I was getting slight sweating on my face in even moderately stressful situations (this wouldn’t have happened before ETS- then only sweat while under much stress and warm temp). At first this sweat which I felt was tied to GS seemed mostly like phantom sweating because I would feel it happening then look at my face to see only a few very small beads of sweat. Later this increased an overall damp look on my face and was made worse if I tried to wear any lotion at all on my face. By the way, I always used to wear a slight amount of lotion on my face prior to ETS to keep my skin youthful. I can’t go anywhere near ANY lotions now (not even the most neutral, unscented, "Hypoallergenic" types) without causing havoc with my allergies and this GS/ stress associated sweating. It is all very unnatural and disturbing to say the least. When I told Dr. Reisfield about this sweating situation he suggested that the nerve may have grown back some and was causing this new sweating. He thought another cautory might be in order. It’s scary to think I actually considered this for a while. Thank goodness I didn’t let the cautory iron back in to do more damage!

Ok, let me go through a few more side effects more rapidly. 'Pins and needles' on face and head. Thermoregulatory problems. Isn’t it nice to be really hot when others are cold and vice versa. Facial pain (primarily just below my left eye). This later turned into a pretty nasty left eye twitch that lasted about six months- the nerves seemed confused and were all reacting sporadically. With my severe sensitivities to scent, etc one of the things that I loved more than anything in the world has become lost to me. As I explained earlier, I swam at a high level for most of my life (started age group swimming when I was 5 and swam through and beyond college) right up until I had ETS. I used to love the serenity and peace that swimming brought. There was something about the rhythm in breathing and the simultaneous movement of arms and legs, water moving across the body. Not only would my body get a great workout but also I would get a chance to clear my mind. The effects of a good swimming workout left me very confident and gave me a calm I cannot describe but it is much like what is referred to as runners high. Now not only do I not achieve a runners high but there seems to be an inverse affect from aerobic exercise. Many times I feel worse and 'empty' after exercising. On top of that, the chlorine now caused my eyes to burn so bad and skin to 'crawl' discouraging me against even getting near the water. CS is also worse for 24 hours after swimming. Let me remind you that I have never had a reaction to chlorine or allergies and now after ETS both of these are showstoppers regarding the sport I used to love.

I had a very low heart rate (even for a very fit athlete) after the surgery and actually fainted a couple times during my first year when getting up quickly. Once I got out of bed rapidly and knew I was going down so I grabbed one of my very expensive speakers to brace. I woke up a few seconds later to find myself on the floor with my speaker nearby, its face torn off and ruined. I have no history of fainting spells nor does my family. Over the last couple years my heart rate has come back closer to normal. I believe this is partly due to my relentless pursuit of fitness (which has been very difficult with out the normal drive and associated runners high mentioned earlier). Last year I ran a marathon. I now sweat on my face when I run (assuming I have not been using the robinal to suppress the gustatory/stress related sweat mentioned earlier).

My skin is very pale to the point of looking not healthy. My first couple years after ETS I had several people ask me if I was OK. I said I was fine, why? They said I didn’t look well, pale and clammy like a diabetic. I am NOT diabetic by the way. I started using self-tanner and now kind of have it down to an art once to twice a week. By the way, for some reason, when I put it on my back it seems to slightly decrease the amount of CS. The only brand I have ever tried is SEA & SKI Sunless deep dark self-tanning lotion. Try it out and see if it helps. Also, it is interesting to note that if I have a small amount of sun for prolonged periods, like when I fly, my face actually get more pale not more tan- I used to tan fairly easy when I was flying, The only way for me to get a normal looking tan now is to go out in direct sunlight for many hours with tanning oil on my face. I have had the same success with sun beds. I still try to avoid lots of sun to prevent premature aging even though ETS with my dry skin, screwed up glands and inability to wear lotion have thrown a large wrench in that plan.
My face gets dry but has started producing slightly more oil, which seems to help with the lack of 'normal' moisture especially when I am using the robinal. I have about 20 tubes of Neutrogena lip moisture spread everywhere from my car to my flight bag for my lips. It contains no fragrance and is easier on my newfound allergies.

Noticed slight shaking/trembling hands at about month 6 and asked Dr R about it. He said this was new to him. Circulation is decreased to digits. When I wake in the morning my hands are a little numb and tingly but better than they were during my first year where I woke a couple times to have no feeling to an arm. This is scary. I believe running has help return my heart rate and circulation.
Hair. Hmmm, this is a very strange one. I did notice some thinning my first couple years but the loss has tapered off some. This is partly due to a phenomenon I noticed while spending some time poolside (prior to me throwing in the towel on swimming). If I spend much time at all outside in direct sunlight with my head not covered, that night and the next day I notice a dramatic increase in hair loss when I brush my hair. If I keep my head covered and out of the sun (I would wrap a t-shirt around my head when training for my marathon last year) my hair does much better. I attribute this with the unbalanced gland thing again but I do not know how or why the sun plays into it. I just know what I have observed. Let me also state for the record I was a lifeguard for 5 years of my life and had no such phenomenon prior to ETS.

I want to touch on the allergies thing again. I cannot emphasize how much ETS has messed me up in this area. I believe I now have asthma, which causes a shortness of breath (not good when trying to train/run a marathon). I have had a hellashus chesty cough pretty much from day one post ETS to the present that baffles most GP’s. I am going to see a respiratory specialist soon to get his take. My nose is constantly stuffed up and sometimes I get a slight bloody nose- had a bloody nose once my whole life prior to ETS. I already mentioned my eyes….Oh my eyes, I wish the burning would go away and they would clear again. Take this for what it is worth but prior to ETS I had very white/blue eyes and people would actually comment on my eyes. Now my eyes look cloudy (unless I put some eye drops in, which is not a good idea- eyes will get addicted to the stuff that whitens and make things worse) and slightly sickly. I am more light sensitive now and feel very uncomfortable outside without dark sunglasses. Even then the peripheral light can be bothersome. For those of you who think that it is pure co-incidence that I got these severe allergies the same exact time that I had ETS I say to you NONSENSE! I have no history of allergies like this, nor my family. What has happened to me is a direct result of ETS and the disarray of signals that balance out every part of my internal chemistry. This is the only reasonable explanation and I will not be insulted by anyone not intimate with my health, history and present condition. So Tom don’t open your mouth!

Finally, I will touch on two final effects that are much harder to qualify. I have throughout my life always been gifted with a creative edge. From the time I was an infant I had a free flowing stream of creative thoughts and ideas. Sometimes this is in the form of witty insight other times the ability to grasp deep thought provoking ideas on the fly. If anything I may have entered the wrong career field even though I do like the challenges of flying and wouldn’t trade it for the world. I now feel that a part of the creative me has been lost and is dead. I feel certain emptiness now where there used to be an intensity that could rarely ever be diminished. The 'killer instinct' and 'flight or flight' impulses no doubt benefited me during my competitive years as a swimmer. I miss this part of me and am sad when I have to consciously think of what I am going to say without the 'instinct' kicking in. Music (something I have always loved dearly everything from rock to classical) has also become less rewarding. I feel this is partly due to the many distractions related to side effects but also a diminished response to the excitement and "feeling" that music used to bring to me. Yes I attribute these losses all to a "simple 30 minute procedure that will reduce sweating on the face and hands with very few side effects".

Where do I go from here? I will definitely have a reversal. I have mixed feeling with Dr R because I feel he could and should have done more to screen me as a poor candidate for the original ETS. I have communicated with him off and on the past year regarding reversal and talked to a couple of his reversal patients. It is too early to tell how much improvement they will see but one of his reversal patients thinks he has achieved a pretty good result. Anyway the verdict is still out. I will have the reversal with Dr. Lin or Dr.T.T. I am a little worried about being three years post op, but am hesitant to get rushed into something again only to find out that a "new technology that helps the body regenerate nerves 98% has just been released" one month after I have my reversal. I anticipate a reversal within the next 6 months though

P.S.- Sorry about the typos/missing words. I just tried to get this thing on “paper” on quickly and painlessly as possible. Who likes writing a story on how their live has been ruined?