Monday, October 1, 2012

My Experience With ETS Surgery

ETS Surgery (Endoscopic thoracic sympathectomy) has changed my life in a lot of different ways. I hope to explore as much as I can in this post. Whatever I miss in this post it is bound to come out in a later entry.

Before I begin, I will consistently remind readers/sweaty friends that ETS surgery should be the absolute LAST option. Consult with your own doctors to decide what is best for you.

This is a hefty post and I hope you can stick with it. Ok let's get started.


Bagel Shop Crisis
The summer after I graduated high school I took a job at my local bagel shop. After two days I had to quit. Part of the problem was the owner didn't train me well, but the other reason was my sweaty hands. Putting gloves on and off was a maddening struggle. The sweat either trapped them on or created a jam when I put them on. My hands have a tremble/shake and when I'm under pressure it's exasperated. Cutting bagels with shaky hands is recipe for disaster.

I couldn't handle the morning rush. Bagels straight out of the toaster are fucking hot! I was fumbling around like a fool. The owner pulled me aside asking what the problem was. I simply said, "This isn't going to work out." And I left.

It was still early in the morning when I came home. My dad was just leaving for work. "What happened?" Well Dad, I quit. We didn't have time to talk about it. He rolled his eyes and went on with his commute.

My mom was home and I knew this would be my opportunity to really explain how hyperhidrosis was "ruining my life." I don't remember the words I used but I finally explained that my sweaty hands prevented me from schmearing cream cheese on bagels. I do remember midway through our convo running to my room. I dug up an old article from a teen magazine I had saved in a shoe box full of pictures and notes from my BFFs. The article was about a girl who had hyperhidrosis. When that article came out there was no Google for me to search 'hands that won't stop sweating.' This was the first time I heard of someone having the same symptoms as me. It was an OMG moment for sure. I cherished that article and it turned out to be a great way to explain something that my parents didn't quite understand.

I handed the article to my mom, "This is what I have." That was in 2004, so Google was around when I finally showed my parents the article. I had brought up my sweatyness to my parents previously but they dismissed it. For a long time I resented them for it, but as an adult I realize they had no idea what to do about it. It was easier to say, "You'll grow out of it," then figuring out how to treat it. So after our conversation and my dramatic end to a career in bagels I went on the internet and showed them, "Look there is a surgery for this."



Meeting Dr. Fischel
If you Google the name Dr. Fischel you will see a series of red flags from people attempting to sue him. That wasn't the case in 2004. He had a website that praised the results of ETS surgery and I was enamored. This was the answer to my prayers. Happy day!

He was also located in Orange County near the college I was going to attend, Chapman University. It seemed the stars had aligned.

My mom took me to my consultation with Dr. Fischel. He asked me to show him my hands. I raised them up so he could see the sweat dripping down. I began to cry immediately. Sob really, I could hardly speak.  I was talking about a problem I had suffered with in silence for the first time openly. I was overwhelmed with emotion.

He described the surgery and what was involved. That he had 100% success rate in stopping sweating in the hands. He could not stop the sweating in my arm pits and feet but they may be reduced. He briefly mentioned the possibility of compensation sweating. That some of his patients experience this.

Before I could proceed to schedule the surgery he said I would need to try a prescription strength antiperspirant. I remember he laughed it off knowing it wouldn't help in the least. My mom and I laughed too knowing it would be pointless. Regardless, we filled the prescription so we could move the ball forward on scheduling the surgery.

That was it. Surgery or antiperspirant, those were the two options he gave me. He also didn't ask if I had seen any other physicians or dermatologists regarding my HH.

My mom and I left that appointment knowing I wanted the surgery ASAP.


Dealing With Insurance
ETS Surgery is not cheap. Any operation where you're put under is going to cost you. I don't remember the total but my parents spent a solid year petitioning insurance to pay for it. As I mentioned in a post here, you have to be your own advocate to get insurance to cover treatment. And remember, if you are insured you have every right to fight for treatment. Don't let anyone tell you otherwise.

Tips with dealing with insurance are available at SweatHelp.org.

Luckily Dr. Fischel was in the area I was living for college, as mentioned earlier, so this helped. I visited a primary physician to sign off on the surgery. I showed him my hands telling him this surgery was going to help me. "Of course! Let's get those sweaty hands taken care of." The doctor didn't think twice when writing a referral to Dr. Fischel. I had already researched my options, why would the doctor need to?

Now I know why people seek out more than one opinion. I did not and I regret that.


The Surgery
The summer of 2005 I had the surgery. There was an unprofessional hiccup from Dr. Fischel's team as they tried to reschedule the week before my surgery as they double booked the operating room. My mom being the awesome woman she is fought to keep the original date.

The surgery went off without a hitch. I was a little loopy after saying silly things but it was no different than kids after dental work. Drugs are the best!

If you want details on what the surgery entails you can see what Wikipedia has to say. It's not something I can describe too well and I don't want to say something inaccurate.


I'm Cured... Juuuust Kidding


After the surgery my hands to this day do not sweat. It still blows my mind. About a year or so later the compensation sweating became very noticeable. I have stopped the sweating in one area but I have not stopped the sweating completely. The sweat moves to other parts of the body and that is considered compensation sweating.

I knew I had a serious problem the summer I went to Washington DC. I just turned 21 and was so excited to attend Alpha Kappa Psi's bi-annual convention. This is a co-ed business fraternity I am in. I was able to confidently join the fraternity because of the surgery. Lots of hand shaking is involved with the pledging process. Yet, I noticed sweating in new areas and at extreme levels. I came to the DC convention prepared with lots of tank tops to layer. I've always worn layers to help cover pit stains, but this was different.

Some serious bonding went on during the convention. You meet so many great people and I had a fucking blast. One night a group of us decided to go to a club. I was DRENCHED in sweat. My face, arms and hands were the only parts of me that were dry. I was so embarrassed when the guy I fancied tried to dance with me. Here he was showing interest like I had hoped, but I didn't want him to touch me in any way. We danced and eventually got close. We attempted to kiss but I was so uncomfortable it went horribly. He also seemed surprised to feel how damp my body was. I remember I left a wet mark on his shirt. ARE YOU KIDDING ME?! I wanted to crawl into a hole and never be seen again.

When it was time to leave I made a deliberate move to go in a separate cab than him. When we all got back to our hotel I ran to my hotel room looking to change my clothes. My friend and bunk-mate called me out on the odd behavior. The fella I liked took my running away as a sign as I wasn't interested... or so I remember, I could be making that up. Regardless he shied away. I was self conscience in a whole new way. Before I was merely afraid of a guy touching my hand. Now I didn't want to come in contact at all. Luckily I can say for certain this fella wasn't the love of my life but it still sucked.

I thought maybe this was just due to DC weather. It was August after all. Maybe this was just something I would endure in humid weather? Nope. As I type this the backs of my legs are sweating profusely. I do not go a day that I don't wear a tank top under my clothes.

I've gone from fearing hand shakes to fearing hugs. Will they feel the sweat on my back?


I kid you not, the other night I was out with friends and I was tapping myself on my upper back to see if I could feel the sweat through my jacket. I wanted to make sure when I hugged people goodbye they wouldn't feel something damp.  I do the weak half assed hug now. You know the one where you're hips are a good three to four feet apart and you merely lean the chest forward and tap the shoulders. I cringe waiting for someone to call me out on it. Or if they bring me in for a legit hug to comment on how damp I am. Neither has happened.

I've also come to embrace the Irish Exit.
Urban Dictionary Definition: More specifically, the Irish exit refers to the departure from any event without telling any friends, associates or acquaintances that one is leaving. You leave without saying goodbye.  It is almost always the result of being very inebriated/intoxicated.

Rundown of Side Effects I've Experienced
  • Eating: The back of my neck and chest sweats when I eat fast or eat warm foods or drink warm drinks.
  • Spicy Food: My face sweats when I eat anything spicy. I have to ask for salsa on the side and I love Mexican food. This is embarrassing but I ham it up with the taco truck vendors, "Sorry! I'm a gringa"  Smile and nod as adorably as possible. If I'm at home I'll eat spicy stuff. Sometimes it feels nice to clear out the pores. 
  • Boob Sweat: My boobs sweat a lot more. I've had more than one experience of a girlfriend of mine grabbing a necklace I'm wearing and getting a bit of sweat on their hands. Weird that that's happened twice, I know.
  • DRIPPING Body Sweat: I can't walk down the street without coming close to sweating through my clothes. LAYERS all the time. It's not cool when a guy wants to disrobe you before sex and you have to fling all your clothes off immediately because you don't want him to touch your sweaty clothes. Also when I lay out at the pool I am constantly jumping in the water. Sweat? No, no that's pool water. Oh, you're not convinced? Time to jump in again.
I cannot emphasize this enough. DRIPPING sweat. Large beads of sweat. My body would sweat before but now instead of my hands dripping my body is. Mostly my back, chest and legs. 
  • Sweaty Knees: When I go for a run or hike I have really weird lines of sweat running down. No one else has legs that look like this. I'll need to take a picture for you. If I'm in a setting that's 65+ degrees just sitting my legs are much sweatier than before the surgery. 
  • Upper Back Sweat: Racerback tank tops are my best friend. I also have a good collection of cotton dresses that I can wear under my dresses. 
  • Slower Heart Rate: My heart rate is slower. Can't really say that this is a negative but worth mentioning.
I can also go without sweating at all. You can read about my wonderful experience in Mammoth. But on that same trip I did experience extreme sweating. The extreme sweating is not constant but occurs daily at some point and is very inconvenient. 

Side effects are not limited to those mentioned above. Other serious complications can arise. 

You can read more about the pros and cons of ETS surgery here.

Conclusion
I am very sad to know that there were other options I could have explored first before surgery. I took what was a localized problem in my hands and spread it all over my body. I also deal with sweaty arm pits and feet but those too can be treated without surgery. I am hoping that treatment with Glycopyrrolate I will be able to control the compensation sweating. Before I would avoid certain social situations because of my sweaty hands. I still avoid social situations but in totally new ways.

It's a trade off not a cure. Professionally I am much more confident, but I can't say that I am further along in my career because of this surgery.

I am still dealing with hyperhidrosis.

7 comments:

  1. glad ETS is working for you! have you heard of Miradry? It is only for arm pits but it seems like something to look into for us "chosen ones" as you don't have to go under and you heal in a few days. I'm thinking about ETS as hand sweating is my main sweat factory on my body other than my feet and pits. what are your thoughts on Miradry?

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    Replies
    1. I have heard of Miradry and looked in to scheduling an appointment with a local doctor. Then I realized it may or may not be covered by insurance. I'm a bit overwhelmed with the cost of treating hyperhidrosis. I can't afford another expense at this time. Miradry would certainly come at a cost Very frustrating! It does look promising.

      I do not recommend ETS surgery off the bat. If you read the entire post you'll see I deal with a lot of body sweat now that I didn't before. Just the other night I was out to dinner with friends, we were having a drink before dinner waiting for our table and the area we were standing in was a touch too warm. I had to excuse myself to the bathroom because my body was sweating profusely. Luckily the bathroom was a single person bathroom and very cool with air conditioning. I had to take off my top and wipe the sweat down. Take a moment to collect myself to slow the sweating down. If I hadn't done that in no time I would've completely sweat through my clothes and would've been visibly noticeable.

      There are oral medications that a dermatologist can prescribe to help with sweaty hands that I would recommend first.

      I just ordered some sage pills, natural option. I've heard they can help with sweating and are recommended to women during menopause to help with their sweating. I'll do a post on it to report on how it worked or didn't worked.

      Thanks for leaving a comment! Hope this info helps.

      -Sara

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  2. I have horrible sweating, everywhere - head, chest, back, hands, feet, legs - not my pits, though, weird. There's no way I could afford ETS, and I hear it's not always 100%, and a bothced surgery could really be bad for you. I did find this, though.
    "
    I had severe hyperhidrosis along with neurological symptoms such as arhhythmia, rapid heart rate, migraines and muscle twitching. I went through all the regular treatments including robinul, klonopin, drysol, and botox without luck.

    After fifteen years of going to various specialists, I had the ETS surgery done. It went well but after 2-3 years the hyperhidrosis and Raynaud's syndrome (cold limbs) began to return.

    In my case these symptoms were caused by allergies to wheat and dairy (Celiac disease) and mercury toxicity. These lead to depletion of certain amino acids and enzymes, and malabsorption of B vitamins and minerals, especially magnesium.

    After eliminating grains and dairy from my diet, the symptoms have gone away. I have been taking supplements as well. Sometime in the future I will be having amalgam fillings replaced, including root canals.

    If you search, you will find several sources which mention hyperhidrosis as a symptom of mercury poisoning. This can be related to wheat and dairy allergies (gluten and casein) because mercury inhibits DPP-IV, an enzyme needed to digest these foods.
    "
    http://answers.yahoo.com/question/index?qid=20070821121836AAzUjEc

    I couldn't imagine giving up grains or milk, but hey, if it works! Like you said, it's ruining my life. There are days I'd rather not even continue this existence with this problem. I've seen several doctors, asked around, but none of them take it seriously, even though one did say I MIGHT have hyperhidrosis... He gave me some low-dose anxiety medication which didn't help at all. Wish I wasn't in college and living off loans, had my job back, I'd go see a doctor about this surgery or ... something, hell. This shit sucks.

    ReplyDelete
    Replies
    1. So glad to hear giving up wheat/gluten, grains, and dairy helped. I've for the most part given up gluten for a second time. Overall I find it helps my health. I say "for the most part" because I'm not diligent to ask if all foods have gluten :). I'm also trying to cut back on sugar which apparently is the root of all evil.

      It's tiring fighting for your health. I've found being blunt and for lack of a better word a skeptical bitch with doctors works a bit. They come out of their standard speech. You deserve good health.

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  3. Sympathectomy can be devastating impact on one's body/health. If it would be "compensatory sweating" everybody would have it and it would reflect the severity of the palmar HH before the operation. Because according to the literature about 50-70% have it, (and the procedure is performed only in severe cases, right?!), clearly not everybody ends up with this potentially disabling, life-changing complication.
    Some surgeons now refer to it as 'reflex sweating' or reflex hyperhidrosis', which happens to be one complication of spinal cord injury. I woud encourage anyone researching the procedure to contemplate this:

    "The amount of compensatory sweating depends on the patient, the damage that the white rami communicans incurs, and the amount of cell body reorganization in the spinal cord after surgery."

    "Other potential complications include inadequate resection of the ganglia, gustatory sweating, pneumothorax, cardiac dysfunction, post-operative pain, and finally Horner’s syndrome secondary to resection of the stellate ganglion."
    www.ubcmj.com/pdf/ubcmj_2_1_2010_24-29.pdf

    I want you to read it slowly: "the amount of cell body reorganization in the spinal cord after surgery"
    This is another way of saying: scarring of the spinal cord, that is: spinal cord injury.
    You have been warned.
    http://ets-lies.blogspot.com.au/

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  4. Does anyone want to start an ANTI surgery blog with me?

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    Replies
    1. There is a part of me that does, but a stronger part of me that doesn't. One it's hard to maintain momentum on something like that.

      For me it's important to help people see the side effects of ETS surgery. I've had a lot of positive experiences because of the surgery. In the same breathe though it's not what I thought I was signing up for. For some it can be a very poor decision. Doctors won't readily help you explore other options or discuss frankly the side effects.

      Knowledge is power. Know your rights.

      Delete