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AndyInATL

2.5 years post ETS

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I posted formerly as 2003Powerstroke and thought I would check in to give you an update.

I had surgery May 2004 in Ft. Lauderdale for facial HH that progressed annually since puberty. I tried a plethora of treatments before surgery and the only thing that worked was a ton of Robinul and Xanax. My behavioral medicine shrink at Kaiser HMO limited me to 15 .25mg xanax per month and needless to say that wasn't enough. I could have bought more on the street but I didn't want to become a xanax junky like many with HH so when I saved up enough cash I travelled to Ft. Lauderdale and paid out of pocket since Kaiser felt this was cosmetic.

I went through the typical games everyone else went through (learned this post -surgery since I was unaware of these boards before hand) such as one doctor calling to answer questions even though another was going to operate. The problem was since I called so many times and demanded a specific surgery date I ended up with the same doctor that had answered my questions over the phone and of course the first time I met him was in pre-op by myself. Of course I was told CS wasn't definite as well and the major problems many have experienced were never brought up.

That said the only side-effects of surgery have been various forms of CS in various places of my body:

Mild and occasional CS:

1. The tops of my hands form a very fine CS under high heat/high humidity conditions. No big deal and the bottom of my hands are dry UNLESS I wear nitrite gloves which I do when I formulate car paint or paint a car on the weekend. Interestingly enough last spring I was ~4 hours into private pilot training and I was at a point when I wanted to prove to my CFI that I could handle the plane on my own already (under her watch of course). The air was rough as we climbed and I was nervous while holding on to the yoke. All of sudden the palms of my hands started pouring so I wiped them one at a time on my jeans for about 10 minutes. It has never happened since.

2. The front of my shins sweat lightly in high heat/humidity unless I'm loaded on Robinul but being loaded on Robinul can cause you to overheat fast so like many others I try to balance my dosage.

3. In the fall/winter for some reason I get sensitive to spicy foods and micro-sweat from my forehead and scalp. This is occasional and my guess is I rarely use Robinul in the winter but then again I have no clue...

4. The insides of my elbows can sweat even under the influence of Robinul in high heat/ high humidity conditions.

Major CS:

My back.

If this type of CS were not controlled by Robinul and Maxim I would consider this surgery a failure. However, between the two products I can control what would be major CS on my back to a very normal and manageable state. This past summer I chose to use strictly Robinul for CS w/o the aid of Maxim and I consumed 1mg Robinul like candy. I can unequivically say the combo of the 2 work great while they aren't worth a flip by themselves.

That said, I'm pleased with my results and would do the surgery all over again. I don't miss the sweat dripping down my face nor the anxiety that went along with it.

I'm 31, male and have an athletic build.

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Hi AndyinATL'

Can you tell me how you are using Robinul and Maxim and what doses to control your CS? I am curious...do you have trouble urinating, dry mouth, blurred vision, etc... taking the Robinul? How is Maxim used?

I too had ETS and am happy with the results...but always wonder what might help the CS.

Thank you

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Unlike other drugs in its class I have zero side effects from Robinul. Robinul dries me out from the waist up meaning as the dose kicks in my lower back dries out first then the drying effect works its way up my back. It takes around 2.5 hours for Robinul to work initially and I do build up a tolerance as the summer progresses though that tolerance goes away in the fall when I cut back on its usage.

Post surgery I tried another drug like robinul that I think was blue in color and smaller in physical size and it didn't work as well, I couldn't read a newspaper by the afternoon and I had problems urinating. It's drying effects were not as good either.

A normal summer day when I'll be outdoors I take 2-3mg in the AM then 1mg around noon, then 1mg every 2-3 hours until I'm inside for the night if that makes any sense.

In the winter it depends on what I'm doing and where I'm doing it. Ithas been 70+ here in GA lately so I've been taking a little Robinul each afternoon. I travel a lot and recently that has meant being in Daytona Beach, FL every other week where it has been 80 so obviously I treat those trips like my normal summer days as far as dosages are concerned.

I apply the Maxim to my chest and back after I take a shower each night before I go to bed.

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I just noticed I'm popping 2mg pills not 1mg pills.

On that note my Dr. at Kaiser technically has me dosed at 2mg's 3x's per day and won't budge from that Rx. Fortunately she writes me 12 months at a time so I'm able to take more in the summer when I need them or there would be problems.

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Did xanax cause any side effects Andy? Thanks.

.25mg didn't for me but up the dosage and/or mix with alcohol and I could see some sleepy/dizzy issues occurring.

Keep in mind Xanax works for about 2 hours then you need to pop another one and you will build a tolerance quickly which means the mg's need to increase over time to get the same effect.

Xanax does work and it's worth trying even if you only use it for special occasions like an interview or presentation.

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Hmmm, noticing a crop of new posters that are pro-ETS.

Please anyone considering this, check this out: click here.

Please explain this a little better.

If you think I'm an industry cheerleader/paid blogger/borderline psychopath like a few appear to be on here you are wrong.

Sorry if I'm taking it the wrong way but I just want to make sure we're crystal clear on where I stand.

Happy New Year and Cheers! :wink:

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I also want to be very clear regarding my position about ETS.

It took me 37 years to decide if I wanted to have this surgery. I invested many years researching the topic. For me, it became an obsession that I do not think could have been broken. It was just a question of finding the right doc. I would always have wondered what if...and for me it was an huge success!! My hands are completely dry and my FB is better. The only side effect for me is CS( which I was fully prepared for, and is very tolerable).

That being said, this is a VERY personal decision. In the medical field, you are almost always presented options. It is up to you to research, and decide a course of action and the doctor that will work with you. I found a great surgeon who acted conservatively, despite my urging. I think he was correct?? I had more conservative T3 sympathectomy...this is why I still have a blushing problem.

I have also noticed that people who blush without HH seem to be the least happy with the results. Maybe because they do not have the coping mechanisms to deal with their newfound sweating?. Or, maybe because in a T2 sympathectomy there is a greater risk of more extreme CS? ( In order to really have a shot at knocking out the blushing, the T2 ganglia must be isolated).

I am not sure of the answers to the above questions, but I certainly do understand those blushers/flushers who have great reservations about ETS. And while I would NEVER push anyone into a surgery, I do think ETS is an option that should be explored by anyone with severe, debillitating palmar HH. It certainly has changed my outlook on life!! :D

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It is good that there has been some positive outcomes and that your lives are better for it. Most everything that I have read from folks who have had this procedure performed has been life altering, but in a bad way.

Good health in 2007!

Twickle Purple

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Thank you TP for your sincere remarks.

And thank you so much more for not concluding with...wait another few months and you will start losing your hair, eyes, fingers, etc... :roll:

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Hi AndyinATL: I think I remember you from the other forum. When you said your previous name was Power23, I slightly remember you from the post esfb section. Was it you that was a salesman, and you had a hobby with racing cars, or something? Anyway, glad to see you back, and doing well. I am very pleased with my surgery, which was done in CA. No CS in the winter months. Mild CS in summer, which I control with Maxim. Good luck with everything.

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Hey Andy, can you post the name of your surgeon and how many ETS surgeries has done to date? I have been making a list on my site and want to add any ones I am missing who have performed over 100 surgeries. Thanks.

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Hi AndyinATL: I think I remember you from the other forum. When you said your previous name was Power23, I slightly remember you from the post esfb section. Was it you that was a salesman, and you had a hobby with racing cars, or something? Anyway, glad to see you back, and doing well. I am very pleased with my surgery, which was done in CA. No CS in the winter months. Mild CS in summer, which I control with Maxim. Good luck with everything.

Since I didn't know about the forums until after the surgery and chose not dwell on them once I found them, I forgot which one I posted on before. :lol: I thought it was this one but thanks for showing me I was wrong. :wink:

I was 2003 Powerstroke and following diesel drag racing is still my thing but now I have a new Mustang GT so I race with the 'gasser trash' like myself as well. :lol:

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Hey Andy, can you post the name of your surgeon and how many ETS surgeries has done to date? I have been making a list on my site and want to add any ones I am missing who have performed over 100 surgeries. Thanks.

The younger of the two guys in Ft. Lauderdale but I forget his name.

I'll see if I can find it.

I also went with clamping if I didn't already mention it.

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