Operation date: 1/15/01
Patient name: WetBoy
Dr. Nielson and staff, since you said you've done 8 year follow ups on patients I thought I would forward you my 8 year follow up from ETS Surgery. This is my life post ETS and how it has affected/destroyed my body.
· Compensatory Sweating - I have had this side effect ever since about a week after my surgery and it has never let up. Every single part of my body sweats uncontrollably (except my hands which only sweat at night). I can only wear black clothes now and my whole body is usually soaked.
· Gustatory Sweating or Frey's Syndrome- This side effect came on two to three years after my surgery but this past year it has become horrible. It does not matter what I eat (pop-tart, ice cream, ham sandwhich, etc.) once I start eating a river of sweat comes pouring out of my head. I can no longer go to breakfast, lunch, or dinner with anyone and enjoy it. Think about that one for a minute… Food is the essence of life and I hate eating now and have lost weight. Eating and food is also the center piece for just about any event you can think of. All of this has been ruined for me because of this surgery. I specifically asked you about this side effect prior to my surgery because I already had issues with GS and you told me "Yes, it should help". It's made it a thousand times worse...
· Hair loss - In the matter of three months (September, October, November 2008) I have lost almost all of my eyebrow hair and my eyelashes are thinning and are probably the next to go. It's turning blond and just falling out. The hair on the sides and back of my head is falling out as well and I'm starting to look like a sick cancer patient. Everyone stares at my eyebrows now like there is something wrong with me.
· Dizzy spells and fatigue- I now have dizzy spells and spacey feelings every once in a while. Several other ETS patients have complained about this on forums, but it is not listed as a side-effect on your website. I think it has something to do with the flight or fight response that is destroyed with ETS surgery. I'm also sleepy a lot of the time and don't have the energy I use to. I have also fainted and had to go to the emergency room.
Risks
Side effects of sympathectomy may include decreased blood
pressure while standing, which may cause fainting spells.
· Sweating while sleeping - Not sure what there is to sweat about when I am asleep and not moving, however, I often wake up drenched with the chills and my teeth rattling. Even my hands sweat at night now. I know other patients have told you about this problem and I have even talked with your staff on the phone about this but again, it is not listed as a side effect on your website.
· Decreased libido - This is something that has come on recently like the eyebrow hair loss and I have never had issues with this before. Could be due to the Kolonapin you recommended, depression or ETS surgery. I have also read several patient complaints of impotence caused by ETS surgery. If there is even the slightest possibility that sympothectomy may cause impotence, that needs to be revealed to patients! I wonder how many men planning to start a family as I am would go through with ETS after reading the statement below.
Risks:
After sympathectomy in men, semen is sometimes ejaculated into the
bladder, which may impair fertility.
· Back pain - Again I have NEVER had back pain and lately, I feel lots of pain in my lower back and pain sometimes shoots up and down my spine.
· Depression - I have to think about ETS surgery and what it has done to my body every day. There's no way around it; I wake up sweaty from sleeping, then once I get out of the shower in the morning, the CS kicks in as another reminder and once I eat breakfast, the river of sweat flows from my head. It is so uncomfortable that I sometimes think being dead would be a better alternative to living like this and I've got a lot to live for.
· Skin Problems - My back keeps breaking out in this strange acne that is like cystic boils that don't seem to ever heal. It goes in cycles and I'm sure has to do with my pores not being able to cleanse themselves properly, blood flow, or just the constant sweat on my back. My complexion has taken a turn for the worse as well. I'm 36 years old and should not have these issues.
· Prescription Drugs - I have been on a host of medications ever since I had ETS surgery - Ditropan, Levsinex, Bactrim & Nicomide (for acne), Robin Forte, and now Kolonopin, Prozac, Soma, Viagra, etc. Ditropan worked somewhat for a few years on CS but no longer has any effect on me. The Kolonipin you suggested actually does help with CS somewhat as long as I do not do anything too physical (it does nothing for GS) but it makes me feel sleepy and affects my short-term memory. Nothing seems to completly work on these debilitating side-effects without creating even more side-effects. I was never told that it could be even a remote possibility that I may have to take all of this medication for the rest of my life because of this surgery. If I was told, I NEVER would have gone through with it.
-
My eyelids are starting to swell and look puffy, turn a little red, and my left eye twitches from time to time. My hands have started to feel like they are tingly, numb and are falling asleep at times--probably due to lack of blood flow caused by ETS surgery.
- My nose waters during exercise or any heavy physical activity.
-
Stomach problems - I have had stomach and digestive problems ever since one month after I had ETS Surgery.
- Recurrence of original symptoms - Every part of my body sweats at one time or another just like before my surgery, only now I have to deal with CS, Frey's Syndrome, and all my hair, eyebrows and eyelashes falling out, etc. etc. etc. ETS Surgery changed my body and I sweat more now than before I had the surgery. So much for "Very Dry". What an uninformed mistake I made.
I've been referred to a Neurologist to see if there is anything they can do to help me.
Just thought I'd give you my 8 year follow up. It would be great to see it posted on your testimonial page. I think as time goes by, you are going to have more and more unhappy patients, lawsuits, problems, etc. and hopefully, be out of the ETS business just like Dr. Garza in Houston, Texas. I've attached a few helpful links about ETS surgery below. Maybe you could read up and list ALL of the side-effects this surgery causes on your website so your patients can be fully informed before destroying their nervous system.
Sincerely,
WetBoy
