Inside the heart of an HH sufferer

0 Kudo

Author	Comment
nimiruy	Inside the heart of an HH sufferer		Lead	[-]
Member Posts: 22 04/27/08 03:10 PM	Tags : None I don't remember exactly when my HH physically manifested itself. I do remember, however, that back in grade school, I noticed my new white socks would turn black by the second month into the schoolyear from being stained by my black school shoes. I do remember when I was just a kid, getting home from school, my mom would pick up my school shoes to put them in the closet, and she'd look at me wondering "Why are the insides of your shoes so wet?" I do remember back in high school, some of my friends would say "Eeww… your hands are wet" when I shook their hands. But I honestly did not feel anything was wrong with me then. I shook hands whenever I felt like it, and I couldn't understand why some people reacted weirdly. I held hands with other people during Sunday mass when the priest told us to do so. I wore shoes without socks, when I felt fashion called for it, I don't remember being bothered by a puddle inside my shoes. I do remember getting home however and wondering why my feet smelled like hell. I did not realize back then that I was different. Ahhh… ignorance is bliss. But I grew up. Kid's play was over. More and more, I found myself in social situations where first impressions were everything. Going to college, meeting new friends, going in for job interviews… I think it was at this point when I started to care. That was when my HH manifested itself emotionally in my life. My concern grew everyday, until it got to the point where I'm at right now…. HH on the back of my mind 24/7. Yes, 24/7 - and you all know this is not an exaggeration. Okay, probably a few minutes a day I forget about it, and of course when asleep. Reading through the posts on this forum, it's like everybody has been watching me all these years. The pain, the embarrassment, the awkwardness, they are all too real. And just like everyone, I would almost do anything to get rid of this condition, which for a long time has made me feel abnormal and inferior. I can honestly say that I have not allowed HH to control my life. I graduated with honors from high school, college and law school, and I am now a CPA-Lawyer. I have been the officer of several organizations, and have mingled with other people quite successfully. In fact, I've hosted a lot of events. But for some reason, at this point in my life, HH seems to be a bigger issue. Now I feel that it stops me from realizing my full potential. Several months ago, I came across a website promising to cure me of my HH for good. The doctor is based in Texas… I don't even remember his name anymore. At last, a cure… sounds too good to be true. But I looked forward to having the surgery. Then just a few days ago, while on YouTube, I was shocked to see how a lot of people's lives have been ruined by the surgery. Outside of the ETS doctors' websites, I've only read about 6 posts who claim that they have not regretted getting the surgery. Everybody else were not so lucky. At this point, I have not totally eliminated ETS as an option, although at the back of my mind, I'm thinking "Am I crazy? How can I even consider this surgery when a lot of people swear to being permanently disabled by it?" Compensatory sweating. I live right now in California, USA. I can walk under a blistering sun for 10 minutes up and down a hill, and only my palms and soles will be wet (crazy wet). But the rest of my body is completely dry. Even my pits would be only mildly wet, which I think is normal. If I get an extreme case of CS after ETS, I don't know if I can cope with it. Right now, people realize I'm different only after shaking my hands. But if I get CS, I'm expecting that even strangers will start staring at me just because I'm soaking wet on my back, belly and groin. Worse, I am originally from Asia, and my country is EXTREMELY humid. "Normal" people sweat profusely in my country because of the sheer humidity. I plan to retire in Asia, but if I get CS, that may not be an option anymore - A HUGE consideration for me. By the way, back in Asia, I'd sweat all over because of the climate. I cannot imagine sweating more because of ETS. I'm particularly concerned about getting CS on the soles of my feet. Shoes don't last long with me, and I avoid sandals as much as possible. Depending on the type of shoes I wear, sometimes I hear a swooshing sound from my shoes at midday just because my feet are soaking wet. No relaxing feet massages for me as well since I don't want to gross out the poor masseur. (Even as an HH sufferer, I would find it uncomfortable to touch somebody else's sweaty feet. So I can understand if I would appall other "normal" people.) I simply cannot imagine my feet being more wet. Anhidrosis? Well, I'm not outdoorsy. I don't play sports. So, at first glance, this is not a major issue for me. But what if I need to work on my backyard, or do household chores, or carry heavy stuff when I'm traveling? I don't mind looking completely dry from the nipple up, but is that healthy? Won't I collapse from overheating? I also go to steam baths every now and then, and I love to run when given the chance. Will ETS stop me from doing all these? Cold hands and feet. I have them now anyway, so it won't make a difference. Reduced heart rate. Right now, I get palpitations for some reason - too much caffeine? I don't know. But if ETS will reduce my heart rate, then I guess that balances off things for me. I may be putting this too simplistically, but I may be right also. Reduced energy, fear, emotions and passion for life? Now, this really worries me. I'm the type of guy who loves to stay indoors on weekends and just watch TV. I'm not the typical sports maniac who can't seem to run out of energy. In other words, I don't have enough energy as it is, and I'm easily bored. If I can get more bored and laid back than this, I'm screwed. But if I get less worried too, then that's a good thing, because I'm a worry wart. Ahh… this is driving me crazy right now just thinking about it. Horner's and Raynauds. These are two significant side effects which I definitely do not want to have. Although I noticed that not a lot of people on this forum and other boards report it as part of their post-ETS symptoms. Right now, I'm counting on luck that I may not have this syndromes. I haven't made up my mind completely about ETS. I just moved here to the US in pursuit of the American Dream. And I certainly don't want to call up my family a few months after the surgery and say "I'm on disability payment because of some surgery which I thought would change my life." I take my hat off to all post-ETS "victims" who remain strong. I wish you all the best. Unfortunately, I don't know if I can be as strong if the same thing happened to me. I might be go on Robinul for now and hope it works. I understand this gives you headaches, but I get a lot of headaches anyway right now because of a deformed nasal passage aggravated by nasal allergies. So I think I'll be fine, plus there's Tylenol. Oral medication would be my last attempt at a normal life before I think of surgery again. I've tried Drionic, peeing on your hands, topical lotions, trying to relax - NOTHING works. Thank you guys for allowing me to post. It's a long post I know. If you have any random comments or advice, please feel free to send a message. My email is brian_go26@yahoo.com. I do have a favor to ask… could you guys please post the names of the doctors who are responsible for the sad effects you are suffering? From the few happy post-ETS messages I've read, I gather this may be a case of good doctor vs. bad doctor, and not really about ETS per se. I could be absolutely wrong about this, but the only way to find out is to conduct some sort of a survey on this board as to which doctors deserve to be put in jail, and which doctors have made HH sufferers happy. So far, Garza and Neilson have popped out as the 2 most hated doctors. But 2 people recommend Duarte and Zusman. Can we have this sort of survey going on? Pre-ETS is a night and daymare.. as you know. Post-ETS has been heaven for some, and sadly, death for many others as far as I have read. The doctor, and not the operation, may be the answer. You have exposed ETS for all its faults already, and people like me who are thinking of getting it will be eternally and immensely grateful for the warning. Now, it's time to expose the doctors - over and over again, in as many avenues as possible. Thank for your time. I pray for all of us.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
rubberducky		#1	[url]	[-]
Member Posts: 166 04/27/08 06:12 PM	I prepared an incredibly long reply to this message only to have the message to fail to go through.(stupid internet) Oh well, I guess you are spared.... I'll chop it down to the meaty bits: I had ETS surgery at the age of fifteen with Dr. Goran Claes, a revered expert in his day, the creme de la creme. He was one of the pioneers of the endoscopic method, and one of the leading surgeons in the field. Still, I managed to come out with a punctured lung during the actual operation, and now I am a frequenter of this board. The skill of the surgeon does not matter as much as your biology does, as well as the ability of your nerve to regenerate (even partially). Since there is no way to deduce how you might react to the surgery before the initial incision, then this means that ETS is just a complete gamble and the odds are NOT in your favour. Doesn't matter how much homework you do, or how much you research, or what the published research indicates. There is really no way of knowing whether you are an "ideal candidate", because even the doctors don't know what being an ideal candidate really entails. To address some of your points: 1. anhidrosis - sounds benign, right? Think of skin shedding off of your face, even in humid weather. Think of red, rough, eczema-like patches sprouting all over your face due to lack of moisture. Think of prematurely aged, fissured skin that make your skin condition comparable to someone twice or even three times your own age. Anihidrosis means you can't enjoy hot showers, pools, or even purified tap water because it will dry out your skin further. 2. reduced pulse - for me, it means I need to start shopping for a pacemaker before I turn 25. 3. reduced energy - a guarantee. Cognitive dulling and poor memory are also some of the gifts you'll find in the party bag. (And you think you need coffee now? -- I need a coffee enema just to get my pulse up to 65.) 4. reduced fear response - FEAR IT. Your fight or flight response, so crucial as a lawyer, will be reduced to one reaction: lay down and play dead. That's right, you, the tiger of the court room, will become nothing more than a possum. Mentally, your fears will still be there, but you will be too damned tired, and slow, to do anything about them. 5. CS - People called me "sweaty betty" at my old job, and I never even had ETS for anything remotely sweat related to begin with! Also, you failed to mention reduced lung function. Its all too real. I have asthma now ; I need to take a beta agonist, four puffs a day, because the surgery acts as a beta blocker. The mental effects, in my opinion, are the worse. Back when I was young and innocent, I was a bright student, and in ninth grade I was a Duke University talent award recipient .. and even offered a half scholarship. (Sorry for the brag) Now, I am at a community college and "sweating" to keep up. NOT fair! My advice to you.... is.... therapy. Seriously. And I am not saying this to minimizing your problems.If you end up having the surgery, you'll need therapy anyways, or something to help you come to terms with what you have done. Most of the members here either have gone to therapy in the past, do go to therapy now, or take some sort of medication (or two or three) to treat the terrible depression that follows. Or they are using another resource, be it religion or meditation or whatever, to come to terms with both the original problem and all of the additional side effects. I say, cut the middle step out, and just go right to a therapist and work on accepting the cards that have been dealt to you, now, while you have your nervous system in tact and your life fairly in order. This way, you can wait until a real treatment comes out, and your body will respond appropriately to it because you haven't tinkered with its delicate nervous system. A big personal fear of mine is: now that I have had ets, will future treatments for my ff/fb even be effective for me? How will these treatments conflict with the side effects of surgery? Spare yourself this chance to feel guilty. I'd like to congratulate you on how far you've come in life, already, despite the HH. You are a strong person. Now, stay strong. Easier said than done, I know, but especially with how well you've already done in life, I can not recommend that you risk all of that for a surgery with such poor results. Everyone thinks that negative effects can't happen to them but the truth is, we all can be made into statistics, quite easily. - mikaela Last Edited By: rubberducky 04/27/08 06:28 PM. Edited 2 times.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#2	[url]	[-]
Member Posts: 22 04/27/08 08:17 PM	Hi Mikaela, Thanks for the prompt reply. I know too well about writing a long message directly on a website, then my message not going through. (Happened to me a couple of times before.) My advice? Write your message first on Microsoft Word, then copy and paste it to the website. If it doesn't go through, you still have the Word doc to copy. You've made a lot of good points, and it helps to drive home the message to me. You must understand, I am a desperate HH sufferer. So even in the face of all the testimonials from ETSers who curse ETS, a part of me remains hopeful that somehow, for some reason, ETS may work for me. I'm definitely not rushing now to go into surgery. But together with the realization that I will be completely dumb to do ETS asap is the depression from knowing that I may (or will) have to suffer HH for life. Thank you for your time. And to think that you had to type your message twice. By the way, from the way you write and the clarity of your thoughts, I can just imagine how brilliant you were pre-ETS, and it looks like you still have that brilliance in you. I hope everything turns out well for you. I will keep you posted on what I ultimately decide. Brian
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
csmess		#3	[url]	[-]
Member Posts: 1195 04/27/08 10:21 PM Administrator	Hi Brian, Sorry to hear about your condition. All of us here can empathize with your situation. It looks as though you have read through the information available here and are trying to digest it all. I'm glad to hear you are taking the warnings of our members seriously. In response to one issue you brought up, I would like to emphasize one thing in particular. It does not matter which surgeon you choose. The side effects do not arise from poor surgical technique or errors. They arise from the destruction of the sympathetic pathways which is the very goal of this surgery. There is no special way to cut or clamp the nerve to prevent severe side effects. The reason you see certain surgeon's names recurring often on this forum is simply a reflection of the huge number of surgeries performed by a few, very prolific, surgeons. These guys spend huge sums of money in advertising to recruit patients have performed thousands of surgeries. Going to an experienced ETS surgeon has one advantage: the risk of complications and errors is lower. That's a good thing. But, the vast majority of ETSers with severe side effects had surgeries that were mechanically flawless. The same surgeon can perform perform perfect, identical surgeries on two individuals yet the outcomes can be dramatically different in terms of side effect severity. Unfortunately, there is no way to predict who will have bad side effects and once the surgery is done, you're stuck with the results for life. It's a one way street. One last thought...I noticed you put the word victims in quotes. I realize that from an outsider's perspective it might seem over-the-top to present ourselves as victims, but I do believe the term applies well in this case. We are victims of fraud because the information we received prior to surgery was deliberately misleading and many adverse effects (all of which are documented in scientific and medical literature) were not disclosed. Simply put, we were not provided the information necessary to give informed consent to the surgery. I do hope you choose not to risk surgery for you condition. I know it's easy to figure the grass must be greener on the other side and that bad outcomes happen only to other people. However, by reading through this forum and taking stock in what you've found here, you'll at least know what you are risking. Myself and thousands of others were not afforded the luxury of full disclosure. That's why we feel like victims. Good luck. Last Edited By: csmess 04/27/08 10:49 PM. Edited 5 times.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
rubberducky		#4	[url]	[-]
Member Posts: 166 04/28/08 04:55 AM	I just want to reiterate that I was in no way minimizing your problems when I noted that you are currently high-functioning. I was trying to tell you, perhaps rather clumsily, that things can and mostly likely will get worse, with ets. I understand how frustrating and damaging HH is to the psyche -- after all, you wouldn't be considering surgery if it wasn't -- but all I am saying is that you have a fairly good thing going on for you right now, and with ets, the lifestyle you live is endangered. When I had the surgery, I was "at the end of my rope" ... or so I thought. But I had NO idea where my rope really ended. Welcome to the new "end of my rope". Its the same old story that you see time and time and again .... pre-ets, people think "my life would just be so much better if this ONE thing was changed... then I could be whole". But the reality is, you are trading that "one thing" for a multitude of other seemingly innocuos things that, over time, are soul deadening. I'm serious. Before there was only one thing that I would have changed about myself, a nasty flush that embaressed me terribly, and now there are so many things that I want to alter because I don't even recognize myself any more. Most of my good traits, that I prided in myself, have withered away and are gone. I only wish that was an exaggeration, but its the truth. I can not bare to look at pictures of myself before ETS, and meeting people now, who knew me before the surgery, is awkward: they only shake their heads and wonder where things went wrong. One week after surgery, a friend casually mentioned that I had dark circles under my eyes, which she had never seen, and that I looked really unwell. She thought I was sick. Well, the look never left and its only gotten worse since. Six months after surgery, when I was looking for work, a previous employer of mine who absolutely loved me failed to hire me because he didn't think that I could physically handle the job... told me to come back "when I was feeling better". The Only Positive.... If ETS has done anything for me, it has caused me to realize that I can "survive" my worst fears. As someone who was previously a perfectionist and type-a personality with high standards, I have become a partial invalid with genuine health concerns and handicaps. So philosophically speaking, I suppose the surgery has "built character", at the cost of relationships, looks, intellect, passion and general quality of life. YOUR personality, the very fiber of your being, your "soul", will be fundamentally changed after ETS. And that is not worth any amount of sweat.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
1slip75		#5	[url]	[-]
Member Posts: 301 04/28/08 08:27 AM	Nimiruy and riffman, Its almost as if I am mowing pavement here, but I wish to add to Mess, and Duckys thoughts. Both of which are dead on accurate accounts of the problems ETS can cause. First the surgeons, I imagine like Mess mentioned that there is not one surgeon out there that can repeat the results of ETS among different patients. It truly is a destruction method of a nerve that they claim only controls sweating. Well I am afraid that is just not true. Like ducky I was at my wits ends trying to save money to have ETS. By the way I did not find this site til after my surgery. I was constantly telling myself as summer came through that I cannot live another year like this. I didn't want to be a sweaty guy my whole life. I thought ETS was gonna make me whole, allow me to date, and pursue sports and jobs that I had avoided since a young child. It's what all of us wanted a chance to be someone we felt HH destroyed. ETS is another destroyer. My personality has dulled, I was always a person who liked to entertain and have fun, now I constantly hear from my friends whats wrong, cheer up, how come you're not happy. I don't know what to tell them. Its hard enough for them to understand that a surgery for sweating exists, much less that telling them it has damaged many aspects of my life. And even though I think its hard to tell my friends it is even more difficult to go to a doctor and explain these new problems and to have them check you and say you are fine. The sympathetic nerve controls so much of who we are and how we react. So even doctors cannot recognize what is the problem, simply due to the surgeons who perform ETS clouding the medical society with praises of ETS resutls. This allows all of them to say it cannot be a side-effect of ETS because it hasn't been shown in study. Well you must study patients to have studies, and you will not find any done by these surgeons other then a close ended questionaire. How can they claim ETS is a sucess when they only give you a choice of very good, good, and poor. What does that tell them???????? Not a thing. Everytime I called my surgeon after ETS to explain what things were happening he kept telling me of medications that would help, or it will go away in a year. Wrong. If you get information sent from them they even try to tell you then that medications are unsuccessful for HH patients and that the only "cure" is ETS. There is no cure for HH so don't by into that. So right now you have one problem sweating, don't trade that in for new problems. MY life is chaos right now trying to decide what doctors to go to, how to avoid more situations due to my increased sweating and what products and medications to try, and how am I gonna make it during the summer when my body has been soaked the last three days due to 78 degree temps. It is just not a risk you need to be taking. It's tempting I know listening to the doctors tell you a miracle method they have developed, all which seem to say that even though it was developed years ago. They like to think the way they do it is special saying they take time to divide kuntz nerves and work diligently to locate the proper T level for cutting or clamping. My surgeon has got it down to 20 minutes to do both sides, 20 minutes. You cannot be diligent in 20 minutes for four incisions and four clamps. He actually brags that he is so quick at destroying your sympathetic nerve, although he doesn't use the word destroy. So its a game to these people a status booster to do these surgeries. They want to tell others that they have the best technique, that they have have develoled the best methods, but not on of them can show you scientific evidence of there supposed success. Just testimonials, which unfortunately some do not realize that they have new problems and that they are a result of ETS. I only found that out after reading here and noticing that everyone here had the same list of problems I was experiencing. So take the caution that these two before me has offered and learn to cope with you HH, because people have been coping with ETS by killing themselves. Charlie
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#6	[url]	[-]
Member Posts: 22 05/02/08 11:04 PM	Hi Csmess, Mikaela and Charlie, Thanks for all your valuable input. I haven't been able to respond immediately… I have been feeling terrible the past few days. After I found out about the horrible side effects of ETS, it was like a wonderful dream of mine came crushing down on me - hard. I was looking forward to having dry hands - problem solved - move on with life. But I was dealt a hard blow. Of course, I am very grateful that you care enough to warn others, and I feel blessed that I came across this website a few weeks before I was about to get the ETS. But I hope you understand, at this point, it just tears me inside to know that there really is no permanent cure. Csmess, you made a good point. It is almost nonsensical to try to find a good doctor when the problem is the surgery itself, no matter how surgically precise it is performed. And I didn't mean anything at all when I placed the word 'victims' in quotes. I just wasn't sure if it was acceptable in this forum to use that word. I'd rather see you as survivors, fighters and saviors, whose biological makeup may have been tampered with - but surely, those doctors didn't take away your compassion and humanity. Mikaela, I didn't feel like you were trivializing my HH. Not at all. In fact, I found your words very encouraging. You are absolutely right - your ETS kicked your survivor instincts to high gear and I'm sure that as time goes by, you will continue to discover more how strong you really are. I do not have any idea of what you are going through, not having gone through those side effects myself, but I can at least imagine and empathize. I'm hoping things keep getting better for ETS survivors like you. Stay strong. Charlie, your last statement rung loudly in my ear. I feel so sad for any person who may have taken his life after ETS. That is simply not the natural course of things. Tragedy after tragedy. Also, you mentioned that you have been soaked for the past 3 days. It's getting warmer now in San Francisco, and I really tried to imagine being soaked myself. I have a very vivid imagination, and it has helped me realize that I probably wouldn't want a soaked shirt and pants over sweaty palms and feet. I guess this is a matter of the lesser of two evils. But I also take my hat off to you. You have been through a lot, and just like csmess and Mikaela, you still have the strength to care for others. Again, thank you all for your time. I hate myself for not being able to totally eliminate the concept of ETS from my mind. But I definitely won't get the surgery… albeit the concept lurks in the deepest recesses of my mind. The past week was, as with the past several years of my life, a battle with HH. For instance, my boss wanted me to sit in a meeting with our new client. After a few minutes of apprehension and sweating, I mustered the courage to say "Sure, I'll join the meeting." But when the client came, and I was dripping, I found some lame excuse not to meet the client. Some of the other clients I couldn't avoid. I just drenched them unapologetically - I had no choice. One guy thought he was subtle enough when he wiped his hand on his trousers after he shook my hand. But hey, after years of HH, my eyes are trained in spotting people who wipe their hands quickly after shaking hands with me. In fact, back in college, this girl literally wiped her hand ON MY SHIRT after we shook hands. That was more hysterical than embarrassing really. Can you imagine that? I have to go get that Robinul quick. I really hope it works. In the meantime, I will try to focus on the more positive things in life. We all have a lot to be thankful for, despite our conditions. I come from a third-world country, and I've seen first-hand what suffering means. I'm talking about people, including children, who are constantly wondering where they will get their next meal, or sleep at night. When I think about these other people, of course, I realize how fortunate I am. Shame on me for being too discontented and selfish, and for wanting everything. I should be grateful for the simplest joys in life, and just learn to deal with "minor" disadvantages thrown my way. This is easier said than done, but I will keep trying. Brian
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
pinker		#7	[url]	[-]
Member Posts: 147 05/09/08 01:18 PM	Have you tried glycopyrrolate solution / crushed robinul tablets in iontophoresis? It is much stronger than tap water. Also you could try botox injections (i'm sure you can afford it if you're a lawyer ). I would buy the fischer MD-1a or the idromed 4 machine because the drionic is totally useless.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
pinker		#8	[url]	[-]
Member Posts: 147 05/09/08 01:33 PM	Btw you may find this site useful - http://www.socialphobiaworld.com/forum15.html I made the sticky thread in an attempt to inform people like you and me of just what is available out there. It is pretty concise. I think I know how you feel regarding the surgery. I'm 20 now.. had severe palmer and plantar hyperhidrosis all my life. Iontophoresis is just about the only thing that works for me, but it doesn't always work. It is very difficult to get it consistent. Glycopyrrolate solution will work though it does have the usual side effects, and you're reliant on medication I guess. I'm not sure of its availability in the US (it is available but I don't know where and how much) , you can crush robinul tablets instead but it won't be as effective due to un dissolved particles. Surgery always crosses my mind from time to time but since a few years ago these guys have put the fear of death into me lol, I guess it's only fair. I do know one guy my age who had surgery on one hand and he has been fine, but he had it done quite recently (possibly 6-8 months ago), I understand side effects don't always appear immediately. It plain sucks for want of a better word. People with underarm hyperhidrosis can have curretage/liposuction surgery with no side effects, but all we can do is electrocute ourselves or pump botox cost permitting. I'm waiting for the day when they can direct a lazer to destroy the sweat glands in my hands.. that'd be sweet.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
Satish	Thank you very much....	#9	[url]	[-]
Member Posts: 2 05/18/08 05:45 AM	I am suffering from palmar and feet HH since birth and i always wondered about getting a cure for this and i was really excited when i got to know that there was cure for this but unfortunately that happiness did not last long(which was good.....)Thank you very much for informing me about this dangerous surgery.......i really appreciate your effort and time in making the people aware of this surgery. I am from India and people are not much aware of this disease in this country sometimes i've found doctors who does'nt even know the name of this disease. Some how in the web i got to know about ETS and i had my surgery on 20th of this month. I just searched in web i just don't know how lucky i am i got this thread and all the info about ETS. I am really grateful to you guys and thank you very much Mikaela. If i had'nt searched the web about ETS definitely even i would have been the Victim of this surgery. I would like to tell one more thing You are just beautiful Mikaela and i really appreciate your heart which wants to help people . This is the first time where i am spending so much of time in typing in a blog which does not bring any profit to me(inspired by you)and i am always grateful to you guys....................
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
Aramid		#10	[url]	[-]
Member Posts: 68 05/20/08 03:33 AM	It is good that you are informed from this site about the hazardous effects of ETS surgery. I was also just like you who is suffering from hyperhidrosis and was scheduled for ETS surgery but luckily, I found this site and cancelled it. I believe my hyperhidrosis is worse than yours. I have generalized hyperhidrosis from the head to feet.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#11	[url]	[-]
Member Posts: 22 05/28/08 10:08 PM	Hi Pinker, I visited your link, and it is very helpful. No, I haven't tried crushed Robinul in iontophoresis. I've tried iontophoresis before (Drionic) but it was not fun. I couldn't stand the electric current, especially on my nails. It was just too painful. And it takes up a lot of time - about 1 hour to 2 hours at night with your hands dipped in water. It just won't cut it with my schedule right now. I just went to see my doctor this morning. The sad thing is, I had to use my insurance policy with Kaiser, and their rule is that you can't go directly to a dermatologist unless you see the general physician first who, understably, is not that familiar with the condition. He immediately recommended Drisol but I specifically requested to be prescribed Robinul. He has never heard of that before. So he called in a dermatalogist. The derma guy did not even bother to shake my hand or inspect how severe my HH is. I don't know if that is standard procedure. Anyway, he also prescribed Drisol and I had to insist that I be given medication. In the end, the physician and derma agreed to give me Robinul. The dermatologist, by the way, did not even tell me how much dosage I should take. He was about to leave the room, and I had to ask about it. To my shock, he simply said, "I don't even remember anymore how much is usually taken." Then he just left it to my physician to decide. My physician gave me the liquid form of Glycopyrrolate 500 mcg/ml. (The tablet form, which I preferred for convenience, would not be covered by my insurance and was not available in the hospital.) From what I understand, Glycopyrrolate is the generic form of Robinul and Avert (please correct me if I am wrong). He told me to take half a teaspoon in the morning and half a teaspoon in the evening. I was wondering if anybody here has taken the liquid form, and how much they took? I will be picking up my medication this Friday (it was not available today, and had to be specially ordered). In the meantime, I will start on Drisol tonight. I'm excited and I am trying to stay positive. I will let you know what happens. I have a national conference to attend in less than 2 weeks, and I hope this regimen will make me more confident at the conference. And also, would you know of any dermatologist in the Bay Area/San Francisco whom I can go to next time? Thanks, Brian
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#12	[url]	[-]
Member Posts: 22 05/29/08 09:11 PM	DAY 1 Medication: I tried Drisol last night. It was a very unpleasant experience. First I washed my hands and feet, then dried them. The directions said they should be completely dry before I apply Drisol, but my hands and feet were moist last night. So I applied the solution anyway. I waited a few minutes, then wrapped my hands and feet with clingwrap plastic, then I put socks over them. Tried to sleep well, but I couldn't. My hands and feet were wet the whole night. Obviously, being wrapped in plastic and socks, they would sweat. But that's what the doctor told me. Is this the proper way to do it? I'll keep posting my progress here, as sort of a journal, and also for others to compare. Please feel free to drop comments.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#13	[url]	[-]
Member Posts: 22 05/31/08 10:55 AM	DAY 2 Medication: Did the same thing as Day 1. Slept better this time. The following day, my hands and feet were wet in the morning but completely dry for the rest of the day. But then again, even without medication, I usually get "dry spells" once in a while. So it might just be one of those rare dry days I usually have. I still don't know how effective DrySol is. But it surely is strong. After washing it off in the morning, I still feel some sort of coating over my palms.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#14	[url]	[-]
Member Posts: 22 05/31/08 03:22 PM	Day 3 Medication: I had a terrible headache at night that I couldn't even get up to put on Drysol. The headache was totally unrelated to Drysol though.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#15	[url]	[-]
Member Posts: 22 06/01/08 10:11 PM	Day 4 Medication: Did the same thing. For some reason, the solution dried up faster on my right palm than on my left. In fact, I had to reapply Drysol on my right palm, just because I thought I didn't put as much Drysol on my right palm as I put on my left palm. But again, it dried up almost instantly. The Drysol on my left palm, on the other hand, did not completely dry at all, so that I just put the plastic and socks on without waiting for it to completely dry. Also, the solution left a thick powdery substance on my right palm, while not so on the left. The left palm was just glistening. The following day, my hands and feet were completely dry the whole day (my palms were flaky, and a bit cracked) EXCEPT for a few minutes - when I pulled a heavy luggage up a 35 degree inclined hill at around noon. At that time, my hand and feet started to moisten, but did not drip. I washed my hands, then they were completely dry again.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#16	[url]	[-]
Member Posts: 22 06/02/08 09:43 PM	Day 5 Medication: Did the same thing at night. The following day, my hands started out dry. But right before grabbing coffee at a coffee shop on my way to work, my hands and feet started to get wet. In short, the whole day, my hands were wet - not dripping, though not merely moist - definitely wet. And my Glycoperrolate is not yet available at Kaiser. Let's see what happens tomorrow.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#17	[url]	[-]
Member Posts: 22 06/02/08 09:44 PM	Day 5 Medication: Did the same thing at night. The following day, my hands started out dry. But right before grabbing coffee at a coffee shop on my way to work, my hands and feet started to get wet. In short, the whole day, my hands were wet - not dripping, though not merely moist - definitely wet. And my Glycoperrolate is not yet available at Kaiser. Let's see what happens tomorrow.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
nimiruy		#18	[url]	[-]
Member Posts: 22 06/06/08 09:00 PM	I'm starting to lose hope on Drysol. Once I am stressed, my palms and feet get wet easily. Yesterday and this morning, when I met with clients, my hands would get wet in anticipation of the meeting. So I would say, Drysol does not work for me. I've used it for less than a week, but I think that's a pretty long time. In fact, the instructions tell me to use it 3 nights straight, then once a week after that. I've used it for 5 nights straight already. The good news is that my glycoperrolate arrived today at the pharmacy and I can go pick it up tomorrow. Maybe if I use Drysol together with the oral medication, there will be real improvement.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
phhdude		#19	[url]	[-]
Member Posts: 1 07/13/08 12:50 AM	Hi Brian, I just stumbled on your post after doing some research for my palmar HH problem, and I can honestly say that I completely feel your pain! I'm also Asian and had this problem since I was a kid. I also went to law school and did pretty well, found a good job as a company officer but I'm now also feeling that my problem is holding me back career wise and also relationship wise. Reading your post was like reading my own thoughts, so I can totally relate to your day to day "battles" with the condition. I have been considering ETS for ages now, but after hearing about all these bad experiences that people have had, I don't think I can go through with it. Please let me know if you ever find a solution! Henry.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote
Dripping Silver		#20	[url]	[-]
Member Posts: 4668 07/13/08 09:42 AM Administrator	Welcome phhdude, What remedies have you tried so far? Have you tried iontophoresis or any of the medications yet? What about Dehydral? Carole
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts	Reply Quote

Add Reply

Yuku free message boards

Inside the heart of an HH sufferer

Inside the heart of an HH sufferer

Quick Reply