I had ETS in 1998 and...

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RobbyL
Posts: 8
Joined: Fri Feb 29, 2008 9:15 pm

I had ETS in 1998 and...

Post by RobbyL »

(copied from other board as I just realized this is a more appropriate forum for my post)

I would like to share three points.

1) I had extreme facial HH that was debilitating. I had ETS with Dr. Nielson (San Antonio) in 1998 and it changed my life. I am now on the faculty of a major research university in the U.S. and it would not have been possible without ETS. I am VERY HAPPY with my results. No major side effects.

2) Beware people who say "Dr.X" is the best at ETS. How do they know, did they have ETS with more than one MD?? If they say they had a positive experience, fine, but claiming that their MD is the best is rooted in falacy.

3) By far, most folks with successful ETS do not return to the HH/ETS forum with any regularity years after surgery. And why would they? I make a point to return time to time to share my life-changing positive experience with those who are considering ETS, I suspect I am in the minority. Frankly, I rarely think about my old HH or even ETS. Those who have had negative results are more likely to dwell and flood the message boards with their experiences.

ETS changed my life for the better. It has been 10 years and I am very, very happy. I don't even think about ETS. I will attempt to return to the board now and then to share my experience for the benefit of those considering surgery, or those who are perhaps nervous about recent surgery. I will likely check the board here for the next few days before I fade back into normal life for a year or so, so if you have questions or comments, strike now.

Best Regards, Robby L

Viking
Posts: 49
Joined: Mon Jan 16, 2006 7:54 am

Post by Viking »

Hi so you must have had T-2 ETS? Did you notice any excessive dryness in your face? Did you have any palmar and/or feet sweating that also diminished? And changes in minor side effects over the years?

Also, did your facial redness decrease even if you had no blushing?

Thanks and congratulations on your success in surgery and career!

RobbyL
Posts: 8
Joined: Fri Feb 29, 2008 9:15 pm

Post by RobbyL »

I had no palmar or foot sweating, facial redness or blushing issues. Dr. Nielson emphasized that my hands would be dry and warm after surgery, which struck me as odd since that wasn't an issue before surgery.

Post-surgery, I noticed that my scalp became dryer. Moderate, nothing too serious. No facial dryness.

My heart rate is lower. I do have compensatory sweating in the trunk, especially back and stomach. If it's hot and humid I do sweat more than normal from those regions, but it is
FAR more tolerable than sweat dripping off my face when it's cold.

Life is good. Thanks for asking and I would be happy to answer any additional questions.

Viking
Posts: 49
Joined: Mon Jan 16, 2006 7:54 am

Post by Viking »

Hey thanks for the responses.

How did you know that your scalp is dryer post ETS? Did you get more dandruff/flaky skin and/or hair loss?

Also, do you know by how much your heart rate went down. Is it still down after all these years?

Thanks again for your time.

RobbyL
Posts: 8
Joined: Fri Feb 29, 2008 9:15 pm

Post by RobbyL »

Viking:

My apologies for the delayed reply. Just now checking back.

I developed notable dandruff a few months following ETS. Moreover, my skin is definitely drier than pre-ETS. No hair loss. Just dry skin. It is managable. Far more managable than sweat dripping off my face in 40F weather.

Heart rate? Hmm. I can tell you that my heart rate is still "low" (~55-60BPM) but I don't recall my pre-ETS HR. I seem to recall that is was in the 70-80 BPM range.

Life is good. :D

Whydidi
Posts: 4
Joined: Wed Sep 29, 2010 6:08 am
Location: Maine

Dr.Nielson San Antonio

Post by Whydidi »

I has extreme facial and head HH, and after 40 years of struggling and trying all kinds of medications, I fought with my insurance and PC dr. to approve the ETS surgery. WHAT A MISTAKE - The first few months were absolutely wonderful, but then I started to suffer from EXTREME compensatory sweating - It is so bad I sweat through my clothes. I was told that a "small" group of people would suffer from compensatory sweating but NOT like this!!! I have been searching now for help with this. Nielson suggested a bunch of different meds, nothing helped. He now will not help without charging a fee for his prescriptions!!! I never thought this would be more debilitating that the facial sweating! DON'T have the surgery unless you are absolutely sure you can stand the sweat pouring out in different areas. These doctors prey on us. If they were more truthful up front, I WOULD NOT have had this surgery. I will post my entire story at another time. I just wanted to post a quick response when I saw Nielson name. :cry: :x

frankscott39
Posts: 1
Joined: Thu Dec 08, 2011 5:36 am

Re: I had ETS in 1998 and...

Post by frankscott39 »

why you took medicines for long time, do you have any serious disease till now ?

RobbyL
Posts: 8
Joined: Fri Feb 29, 2008 9:15 pm

Re: I had ETS in 1998 and...

Post by RobbyL »

Hey folks, I'm back. It's now 15 years post ETS (wow...I can't believe it's been that long) and I'm doing fine. I have no significant adverse side effects, as far as I know. I remain very happy with my decision to pursue ETS and feel it has enhanced my life markedly. I realize that others may have different experiences, but I make it a point to return here every so often to share my positive testimony. I hope others will do the same as it may help those seeking input from post-ETSers.

admin
Site Admin
Posts: 382
Joined: Wed Dec 31, 1969 5:00 pm

Re: I had ETS in 1998 and...

Post by admin »

Hi RobbyL,

Appreciate your coming back every now and again. I agree that most people who are very happy with their ETS results tend to shy away from coming back to the forums. Wish it wasn't so.

RobbyL
Posts: 8
Joined: Fri Feb 29, 2008 9:15 pm

Re: I had ETS in 1998 and...

Post by RobbyL »

Wow - I can't believe I remembered my password to this forum!

Well folks, it's been nearly 20 years post-ETS, and life is splendid with respect to sweating - and not bad otherwise :). I rarely even think about my past HH or ETS. Occasionally, something will trigger my memory and I will revisit the forum, as I am this evening. I feel it is very important, dutiful, in fact, to return periodically to share my perspective to others who may be considering ETS. As I have noted previously, it is my guess that the majority of those who revisit this, and similar forums, many years post-ETS do so as an outlet to warn others of their unfortunate experiences. I suspect those who are living happily are far less inclined to return. My personal experience with ETS has been wonderful - zero regrets.

I am approaching 50 years of age and feel highly successful professionally and personally. In retrospect, I feel fairly certain my life would not be as "normal" had I not pursued ETS. I recall the dreadful facial sweating episodes that were highly impactful in both social and professional settings. I no longer worry about facial sweating, ever. Well, when I eat spicy foods I do sweat facially; ironically, I now embrace those experiences as the sensation is quite uncommon and serves as a good reminder of my past.

I likely sweat from the trunk more than the average person, but not to a problematic extent - I recall this is termed "compensatory sweating". My resting heart rate is probably a little lower than average. Again, no big deal.

As usual, I will try to revisit the board for a week or so to respond if anyone has questions. Thanks to the admin for his/her longstanding efforts to host and maintain this forum for the masses who have been impacted by HH. I will continue to periodically return as my contribution to the exchange of knowledge and information. Best wishes to all.

admin
Site Admin
Posts: 382
Joined: Wed Dec 31, 1969 5:00 pm

Re: I had ETS in 1998 and...

Post by admin »

Thanks for coming back every few years Robby!

Did your dandruff ever improve? If not, do you recommend any products for it? I get some flaking every now and then and use Nizoral.

Also, do your hands or face get a bit too dry sometimes and did the gustatory sweating remain the same all these years?

I will hit 20 years post ETS this summer:-)

RobbyL
Posts: 8
Joined: Fri Feb 29, 2008 9:15 pm

Re: I had ETS in 1998 and...

Post by RobbyL »

Congratulations on your approaching 20 year ETS-anniversary! I wish more of us "old timers" would return to share.

Dandruff - definitely improved over time, yet I maintain a rather mild case of the flakes. So mild, that I do not use any special treatment. My wife and best friends never tease me about it, so I will take that as an indicator of a socially acceptable condition.

Gustatory - yes, spicy foods still drive moderate facial sweating. I'm not a big fan of the heat, so I do not experience gustatory often. But it's still there, for sure.

Hands and face get a bit dry on occasion, but I cannot say for sure this is associated with ETS and do not give it much thought. I often use a bit of lotion on the face after showering during the dry winter months, and periodically on the hands. I do not recall using lotion in such a manner pre-ETS, but that was a long time ago, and regardless of ETS I must consider that I am no longer an elastic pup.

I am scheduled to give a major presentation to my board of trustees in a few weeks. While the presentation is still a knee-knocker, I am reminded how difficult this would have been 20 years ago with the additional anxiety about excessive facial sweating. ETS has simplified life in many ways that I often and easily forget.

I hope you have had a similarly positive outcome. All the best!

admin
Site Admin
Posts: 382
Joined: Wed Dec 31, 1969 5:00 pm

Re: I had ETS in 1998 and...

Post by admin »

Thanks again.

Like yourself, I like the gustatory forehead and scalp sweating side effect after eating spicy foods, as I miss not sweating from my face and forehead and scalp all the time. It is actually a relief that I can make it happen when eating very spicy food, and I always feel refreshed afterwards lol

My hands are a lot dryer these days and sometimes white, but that is still 1000 times preferable to profusely sweaty hands.

Hope you come back again in 5 years Rob:-) And good luck with your presentation.

steve_nf
Posts: 61
Joined: Fri Nov 03, 2006 6:30 am

Re: I had ETS in 1998 and...

Post by steve_nf »

Hi! It has been 8 years for me. I have experienced a little bit of the gustatory sweating, but I don't eat very spicy foods.. usually it's just my nose that gets sweaty. My upper body (above nipple line) feels a little too dry. I have learned to love jojoba oil, it is perfect for dry skin. I dab a little in my hands and spread it around my chest, arms, neck, and scalp. I also have a dandruff problem which I use Nizoral for, it helps randomly... some days I don't have any dandruff, other days it's snowing from head, lol. I also have tried using contact lenses (the most expensive brand), but unfortunately I feel like my eyes are too dry for them, so I have been sticking with glasses.

My left hand is perfectly dry, however my right hand still gives me problems during anxious situations (like I get a lot of anxiety when coworkers stand next to me and watch my computer screen while I'm controlling the mouse with my right hand. In this situation my right hand gets sweaty and I have to frequently wipe it on my pants).

The compensatory sweating is mild, especially after recently moving from Florida to San Francisco :). The cool, low humidity weather dries up my clothes very quickly.

My feelings about the surgery are a 6.5/10. I would probably give it an 8/10 if my right hand was dry like my left hand.

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