My name is Marie, I am 28 and I am
a teacher. I have had HH in my underarms since I was 15 or so. My
mother and a few of her brothers also seem to be suffering from it. In
High School, I tried men's and aluminium anti-perspirants, but none
worked. Of course our family doctor didn't know much about HH so
nothing else was ever suggested. My HH was never severe, nevertheless
bothersome. It also gave me frequent colds and body temperature
problems. I was always cold, even when others would want to turn on the
aircon. I'd wear a fleece when my co-workers had a t-shirt on in the
staff room. Even when I was cold, my underarms would still be sweating.
I managed to get through Uni and my 20's most normally, with an active
social and physical life. I don't know how it happened really, but I
suddenly got really fed up with it last year, when I lived in a tropical
country. Even in hot weather I would be cold and sick, but I would
still sweat. I wanted to get rid of my HH once and for all. I started
to do some research, and was amazed to see how many of us were out
there. Then I found that there were a few ways to possibly get rid of
it: drugs, botox and ets. Drugs were out off the question from the
start; I just don't believe it's good for your body to receive a
constant amount of chemicals. I looked into botox, but it didn't seem
to work permanently for armpits, and it was much more than I could ever
afford. Then I discovered the excessive sweating website. The surgery
was described as minor, and very successful. Side-effects were
frequent, but very tolerable by patients, and much easier to deal with
than the previous condition. (Where are those lucky ones?) I found
other websites, most of which displayed positive sides of ets and
encouraging testimonies, but with very little on reversals. Finally got
the phone number of a doctor in Toronto, and I should have listened to
him. He personally didn't believe that ets worked for armpit sweating,
and so didn't perform it. Then I found Dr. Lin, who happened to be
living one hour away from me. How's that for an omen? We emailed for
a few weeks, and he answered all of my questions. He assured me that he
could cure my HH without what he called "reflex sweating". I thought
this meant the compensatory sweating (cs) that other patients were
talking about. [Dr. Lin is indeed one of the best surgeons in the field,
and I am glad I chose him as I have since heard of cases of scaring
problems, Horner's syndrom and others. If the tone of this testimony
seems in any way to be accusing towards Dr. Lin, please ignore it as I
am well aware that I am the only one to be blamed in my misery.] I
emailed one of his patients who lived in Texas, and she seemed to be
very happy with the surgery. She had some cs at times when it was very
hot outside, but otherwise she was very pleased with the ets.
Somehow I was convinced, although in retrospect it seemed too good to be
true. I was naive for believing that doctors were out there to help us,
not make money out of us; I was lazy because I didn't research it as
mucn as I should have; I was impatient as I should have tried
medications, creams and botox before going to a surgery; I was vain in
believing that negative things happening to other people couldn't
possibly happen to me. The only reproach I have for Dr. Lin is his lack
of honesty. One of the main reasons why I chose the ets was because it
was supposed to be reversable. "If it doesn't work, I'll get the clips
out!" He forgot to mention that the reversals didn't always work, and
indeed, they rarely seem to work fully . He said that only " a couple"
of his patients had had a reversal because they were unhappy with the
outcome of the surgery. He also said that cs would appear only during
"intense heat" (which turned out to be anything above 15 degrees
centigrade, or 10 on a sunny day) and "intense exercising" (read walking
to the train station, and climbing a flight of stairs). All a matter of
perspective I guess... I got the ets on July 27th 2002. My arms and
chest had completely stopped sweating from fingers to shoulders. They
weren't even moist in the heat, which was a bit spooky. My feet were
sweating often, and my hands felt very cold. I felt fine for a couple
days, then strange things happened: I felt claustrophobic; I could
feel the foreign bodies inside me. The cs was intolerable in the 35
degrees heat. I even fainted a few times in the street, and felt dizzy
constantly. I was often feverish and dehydrated. (I still feel these)
I had enormous chest and upper back pain, and my breasts were so
sensitive I had to hold them to walk down the stairs (and I am quite
petite). I emailed Dr Lin and he reassured me that the pain would go
away soon (which it did), and that I should take more pain killers,
which I did since I couldn't walk, sit or sleep. He gave me some
Ditropan for the cs which didn't help at all and made my eyes and mouth
very dry. He also said that the "reflex sweating" would go away when
the sweating returns to my head. It returned, but the cs didn't stop. I
expressed my concerns to Dr Lin. His questions: "do you sweat all the
time, or only when it's hot or when exercising?" I said as soon as I
move around a bit, or go outside. (it was summer) "Ah! that's not reflex
sweating but cs my dear, the consequence of me clipping your T3." So
when's that going away? Never? "Of course", he assured me, "if you are
not happy, we should do the reversal very soon, it may not work if we
wait..." Now you tell me. It seems like whether clipped or cut, the
nerve cannot repair itself. That's when it hit me: shock, anger,
despair. I got the reversal on August 28th 2002, exactly 33 days
after the original ets. Dr. Lin met with me before, and told me that it
should take 3-6 months for my initial condition to return, and the fact
that I exercise regularly should help. Whatever. By then, I wasn't
believing a word of his. I just wanted these stupid clips out of my
chest. No pain in the chest after the reversal, but the scars took 4
weeks instead of 1 to heal. Couldn't breath for a few hours when I
awoke from the surgery, like running out of air on a diving tank. At
the time, I thought it wouldn't be such a bad thing to run out of air
completely. I'm not trying to be melodramatic, just truthful; if you're
going for the ets, you've got to know what awaits you. Three months
after the reversal, my right armpit started sweating during my long
runs. The same happened with the left arm a month later, to a lesser
extent. I am now at month 6, and here is my physical condition. My feet
are sweating constantly if I wear shoes, even if it's freezing outside.
So I only wear socks while inside. Both my armpits sweat during
exercise, and the rest of my lower body floods. I have to change
t-shirt at the gym and wear tight shorts under running shorts. I still
have cs in my back , tummy and legs when I don't exercise, but it seems
to be less than before. However, it is winter here in Japan (yes, I had
to move out of Taiwan), so I am not getting my hopes too high. If it
stays the same when the humid summer gets here, then I will be very
happy. I have to take off my jacket when I enter a 7-11, even if it's
only for 2 minutes, or my back, tummy and upper legs will start
sweating; I spend all day walking very slowly, avoiding stairs or sunny
areas on the sidewalks otherwise I will break into a sweat; I can't
wear a backpack or it will make my back sweat immediately; I always
wear underclothes; hands and feet always cold; I am either freezing or
sweating; feel dehydrated regularly; crave salty food, which was never
the case before the surgery. I have had a lot of problems with both
insomnia and intense fatigue. Some weeks, I lack energy in a way that I
had never experienced before. Getting up for work in the morning just
isn't fun anymore, as I know that I will spend most of the day wondering
if my students can notice the sweat through my clothes (maybe I should
get a desk job like everyone else, where I don't have to jump up and
down all day). Other weeks, and this was especially true soon after the
surgery, I am exhausted but don't seem to be able to fall asleep in any
way. I am not sure if my energy/sleeping problems are direct or
indirect causes of the surgeries, and simply due to depression and
lifestyle changes. Either way, I had never had such problems before.
I also seem to have problems with my joints, although I really don't
see, biologically, how this could have anything to do with the surgey. I
can't sit in the same position for very long or my joints hurt and feel
locked. I am also constantly eating, and will probably start putting on
weight soon as I don't have the energy to exercise as often as I used
to. It is very disappointing to suddenly realise that I may never enjoy
playing soccer in the sun, walking in the park, taking some sun or going
on a beach holiday, which are all things that used to be among my
favourites. Of course these aren't essentials in life; I've still got
both my legs and arms. Nevertheless, I feel cheated. On the
psychological side, I am very depressed and my level of energy is about
half of what it used to be. This has affected my work with young
children very much. I am staying away from any social events and I
haven't made any efforts to meet anyone in this new country. My body
disgusts me and my libido is null. I am always unhappy and unsatisfied
with everything from my work to the way my hair should look. I had
several suicical thoughts for the first time in my life. I wake up in
the morning, go to work and come back home. That's it. Just the
thought of having to go out again is distrubing as I have no more energy
to fight the cs. Much rather stay in the tub with a good book. I
don't wish this to anyone, and consequently I would not recommend an
ets, no matter how severe your HH is. You will stop sweating form your
hands, armpits or head, but the rest of your body will sweat twice as
much, and other problems, much more important, will arise. Not a good
trade-off at all. Good luck everyone with your fight. For the ones
that are even considering an ets, this is for you that we are telling
our stories. It was the biggest mistake of my life, so please stay away
from it. Marie (CANADA) * Please see Contacts section for ETS
contacts CANADA/JAPAN
I had the first op 29.04.02 and the reversal on 27.11.02. I had
profound CS after the first op- I slept on a towel and the towel and
duvet underneath (and even bedding beneath that) would be drenched.
I had the reversal pretty promptly after the first op and had high hopes
and I think it would be important to be realistic looking back. I
probably suffered psychologically worst in the two months after the op,
probably a result of pent up emotion and frustration not to have a
better result sooner but that passed. I would certainly give it a year
after the reversal before deciding for yourself if it was a success or
not. Looking back I think seeing Dr. Telaranta for the reversal was
a good move. I do sweat less now and do not find the loss of the sural
nerve from my left leg a terrible burden at all. I have to say that I
didn't find the whole experience pleasant, but I went on my own and had
to stay in a hotel room for a while before flying back and I became a
bit emotional couped up on my own. However the nursing care is great,
the hospital is clean (but oldish), and I had confidence in Dr.
Teleranta. The hotel is very nice and the room service is great when
you're resting afterwards - if you decide to go ahead remember not to
keep the leg (or arm) which the nerve was taken from stationary for too
long so as to allow it to heal inside without letting the cut nerve
ending sticking to anything (not heard of this happening but doesn't
sound great). The operation was quite a long one and I found myself a
bit ill from the anaesthetic after five or six hours op., but that's
natural enough. My first ETS op had two incissions on each side of
the chest, but the reversal needs three (two each side and one through
the front which were far and away the most uncomfortable). Also, it may
not be possible to use the other original side scars because of
location/slightly larger implements requried this time. Still, the pain
does pass and the nurses were great at keeping the pain at bay with
regular medications. I did notice that one of my scars was not properly
stiched back up and became infected in the hotel bedroom. I easily got
this sorted though back in the UK. Comparatively a minor thing, but not
fantastic. I think my Reversal op went pretty well, with the sural
nerve providing enough length to allow two strips on the left and three
on the right (and on both sides Dr. T was able to touch the T2 with
these). I felt immediately much better on coming around from the op (and
the sensations/moisture of my hands seemed to return), but within a few
days I had reverted to normal (it seems odd to me but apparently its
quite natural for nerves to seem as if they're working when they are is
bruised/suffered a trauma but revert when the swelling goes down). I had
the op in late Nov. and found the following summer very uncomfortable
(as usual), but about a year after the reversal I am sure that I
experienced some new sensations and think the sweating is/has decreased.
Having said that, it was a cold winter and this summer will be my test
to judge how much better it is. I had some pains in my hands
(especially the right one) following the first op, but these subsided
and I think Dr. Teleranta managed to take care of the rest of any
problem with this pain for me during the reversal. Finally, when you
get home from Finland (where I had it done) or Italy you will need to
have the metal staples out. This wasn't fun as one or two were twisted
but the scarring is very neat and hardly noticeable (although I do have
hairy legs). (The op requries four horizontal scars each just over an
inch and a quarter in length if you opt for the leg which I think is
probably the best thing to do. Dr. T also mentioned to me after I had
selected the left leg, that this was the usual choice). On my return
to the UK I called Dr. T once or twice and spoke to him but subsequent
to that I emailed twice but did not hear anything. I found this quite
disturbing (given how promptly he responded to my email queries before
the op [and transfer of cash]) but I am sure if I called him I could
easily enough speak with him now. I'm sure this dosen't necessarily mean
anything, but it's just something I think I wanted to mention. I
have been using medication to help with the CS and with some
considerable success. In fact, it is the only think which has made the
CS manageable. I started off by trying Robinol (a new drug from the US,
which in the UK is only available by private prescription because it has
not yet completed all of the requisite NHS licensing requirements. This
means it is really quite expensive.) I took this drug for about a week
but it had an immediate psychological effect on me and I felt very
groggy indeed. I then tried another drug (which I have now been using
for almost 18 months I think) called Probanthine (Probantheline
Bromide). Although this is an older drug than Robinol (which is supposed
to be much "cleaner" than Probanthine in the manner in which it works in
the body in terms of supposedly not effecting as much) I have found it
much much better. My doctor said that several people had mentioned that
they preferred the older drug. Probably worth trying both though.
When I took Probanthine for the first time, I could feel a tingling all
over as my sweat pours closed and I immediately became much drier. I
started on a pretty high dose (120mg a day- four lots of 30 after
working the dosage up from a low one which you must do gently, so there
is a need to be patient) but am now on a single dose of 30 each morning
and this is enough to manage the whole day (although summer is a
different matter). I don't know if the reduction is more to do with any
adjustments the drug has made to the way my body works or as a result of
improvements following the reversal with Dr. Telaranta (or even some
natural changes/improvement distinct from the op and med) but either
way, the situation is better. There are side effects to the drug though
and some people dislike it so much that they prefer the sweating- still
worth a shot. Principally, the drug removes liquid from the body which
means a lot of trips to the bathroom. I would often go repeatedly on the
high doses, many times. This is much less of a problem now though (lower
dose and my bladder may have adjusted somewhat). Secondly it also dries
the mouth which can make eating difficult- but I find this again has
subsided and I am careful not to take it right before I eat. If you take
a very high dose the eyes can sting too (as they dry out on a high dose)
but this hasn't really been an issue for me more than once or twice.
I hope one or other drug can help others. Iontopherisis may also help
with the hands and feet. I do have some concerns about any long term
risks of taking pro-banthine for so long but there's nothing on the UK
literature with/in the drug packet to suggest this is a problem and I am
now on a modest dose only. If any one wants to chat with me they can
contact me through Meg. Good Luck.
These are my side effects from the ETS surgery - I have had severe
compensatory sweating, my heart beats very rapidly outdoors in the sun
shortness of breath, I have had irregular heart beats, numb hands when
sleeping, fatigue, extremly low endurance comparing before surgery, I
can see my heart beat through my neck, less appetite, and depression. I
am very angry too at my doctor and myself for not digging deep enough
before I had surgery performed on my body. I thought about going to
Finland to have Dr. Telaranta do my surgery too, but luckily my sister
was able to find Dr. Reisfeld here in the states. I was also very happy
to find out Dr.Reisfeld did Telaranta's same surgical procedure and was
on his way to Finland to attend their symposium. This option for me was
the best one financially and distance wise. Telaranta was way too far
and too expensive. He wanted $20,000 US and the trip would have been
$10,000 between hotel and air fees*. So I settled for Reisfeld at
$15,000 and $2000 for a four day stay over their which was like a mini
vacation for me and my wife despite the bad circumstances. Well, I
haven't had anything to celebrate about yet but I am praying every day
for that day to come fast. Charlie had his operation on July 11, and
has seen sweating on his right arm. As of March 2001, Charlie now has
sweating on both arms and hands when he exercises, as well as on his
head. As of April 2004 I am still suffering from many of the side
effects of the original surgery. The reversal has given me a little
sweat back in the head and arms but only upon physical activities, but I
still have the uncontrollable CS and body overheat outdoors and many of
the side effects listed on the ETS websites. I am interested in any
information or testimonials about the new intercostal procedure. I just
may take another chance to get my life back together. You may contact
Charlie at GONZIEEE@aol.com to discuss your Reversal story with him as
he is considering alternative treatments.
I had the ETS surgery done for sweating and flushing. However, I found
that I had severe compensatory sweating after the surgery. I felt
'vague' mentally and tired before I had the reversal, but now I'm
starting to feel the same way I did before the ETS surgery. I had the
ETS reversal with Dr Telaranta, and there are four little scars on the
back of my leg. I don't have any sweating or flushing back on my face so
far. I hope it never comes back again, but Dr T told me it's almost
impossible. There was some pain in my foot after the surgery for about
three months, but it is gone now, with no pain what so ever. I had very
bad compensary sweating, and I couldn't work because I would get wet all
the time. However, since the reversal with Dr T the compensary sweating
distributed, and I don't sweat as much as before. My scar is noticeable,
but that don't bother me at all. I haven't got any unwanted side-effects
from the reversal yet - I hope I don't get any! I don't feel as tired as
I did before either. I had my ets reversal in June 2000. I think it took
for about 6 or 7 months before I noticed the effects. As of
July 2002, I'm feeling about the same, except that I have less
compensatory sweating now.
I had ETS performed for excessive sweating. I had the T2 nerve cut in
Febuary 2000. The surgery was done with 6 small incisions. I immediately
had a very bad problem with CS. I tried unsuccessfully to treat the
problem with medication, this effort lasted through the end of the year.
I found Dr Telaranta though a web page, that was put together by a
person considering T2 surgery. I contacted several doctors that were
listed on the web page, and all of them agreed that Dr T was the best
person to perform the surgery. Everyone of them said there was no
substitution for experience. As for the surgery, I would say that it
was easier than the original sympathectomy. It was done with 6 small
incisions in my chest, which are barely noticeable now. Ther are 4 one
inch incisions in the lower part of my leg (more noticeable). The
outside area of my foot is numb, but doesn't cause any problems. I run
daily with no pain or discomfort. As of July 2002, it's been 15
months since my reversal and I still have CS, but i'm starting to notice
some changes in my condition. My arms and hands now sweat during
exercise. I'm hoping this improvement will continue. I'm still hopeful
that sweating will return to my head, and that I will again sweat in
warm temperatures. If my progress goes no further I would not
consider the reversal to be a success. I still have CS, but I guess I
have to wait. As of December 2002, it's now been 21 months since my
reversal and I would say my progress has been slow. I have some
sweating back in my hands and arms when I exercise. I have had no
sweating return to my head. I don't feel that this return of sweating
has had any change in my CS. I keep telling myself to remain patient, I
know this will take time. If my progress stopped to today I would have
to call the reversal a failure. Don't get me wrong, I would still
encourage people to have the reversal, I think you have to try, I just
feel that I have to honest about by results to date.
I had ETS performed for excessive sweating. As a result of the ETS
surgery I had terrible Compensatory sweating. My only hope was to have a
reversal with Dr Telaranta. I had this performed on 3 December 1999. Dr
T connected T1 to T3 on one side and T1 to T4 on the other. I had
sweating return within 4 months to my right arm (t4 side). It was ony a
light sweating on the underside of the forearm at first, but has
progressed to complete recovery from the shoulder to the hand. As of
March 2001 I have seen little change on the left side...just minor
sweating on the left hand while exercising. Sweating returned to my
forehead after about six months, but only slightly. The progression
there has been much slower. If I wear a hat while exercising it is much
more noticeable. On the chest I have noticed increased moisture when
exercising - in the middle of my chest up to my throat. I have also
noticed sweating has migrated up the chest...especially where my
pectoral muscles attach to the armpit. The major improvement i've
noticed is in two areas; I rarely sweat after my shower in the morning
anymore; and I return to normal much more quickly after exercise. I also
noticed that my stamina has returned to pre-ETS levels, but I think that
is more of a function of training and time. Overall, after a year I
can't say I've seen a major change in CS - some improvement, but not
significant. There have been some days of noticeable improvement
followed by days of seeming regression. I know, according to Dr T, I
could expect changes for up to three years. I also heard that one of his
early patients took a year to two years to see significant results.. AS of July 2002 it has been two and a half years for me, and sweating
has returned to both arms (much more so on the right), as well as the
neck and head on the right side. I still have CS, but it seems less
severe. For instance, in warm weather only my chest and back are
affected. CS has been reuced significantly from my legs. I can do simple
tasks in warmer weather (like hitting a golf ball), without breaking out
into a sweat. While working out I notice sweating on the forehead, back
of my head and neck. If I wear a hat it gets noticeable wet. So the
upshot is...i'm better, but not normal quite yet.
I had the ETS surgery done for flushing. As soon as I had the surgery
done I noticed a change in my personality. I was much more outgoing and
confident. My flushing had completely gone to. My anxiety was greatly
reduced - I used to suffer from anxiety which went as soon as I had the
procedure. However, I felt very vague and tired all the time. During the
time of menstruation I could barely get out of bed, which had never
happened before the ETS surgery. My reactions were diminished and I was
falling behind with work. I felt I lost my spontaniety and wit. It was
really affecting me when I didn't have the time or energy for my
children anymore. Even though there were many pros, I felt like there
were many cons not addressed in any studies about ETS surgery. I decided
on a reversal. My flushing has not returned, but my wit and energy
definately has. I decided to see Dr Telaranta. Even though it was very
expensive, I was feeling very depressed and had to get the procedure
done. I now feel like I have a balance. I'm not as anxious I was before,
but now I've got my energy back. I've also noticed tension in my throat
return, my shyness has returned a little and sweating has returned to my
legs and back. I'm not 100% the same...but there has been a definate
change. As of July 2002, there has been a definate change for the
better. My heart now beats a little if i'm nervous, and i'm answering
questions much more quickly. I sweat much more on my left side than my
right. My face doesn't sweat yet, but my left hand does when I exercise.
Overall i've seen an improvement, but i'm not like what I used to be
yet. As of April 2003 I feel 90% like I used to do. I sweat on my
palms now, I have much more energy, i'm thinking more quickly, i'm
worrying more and my health is much better. I'm seeking acupuncuture as
well at the moment, but i'm glad I went ahead with the Reversal. I no
longer feel like i'm in a 'cartoon'. I no longer feel like i'm in a
foggy dream with delayed reactions like i'm a zombie. Every month I seem
to 'wake up' more and more. As of April 2005 I feel better. I'm on
salt tablets and water to raise blood pressure and volume. I also take a
product called Ambrotose to raise sugar levels and therefore energy. I
also eat well, exercise and go to a Acupuncturist/Herbalist still.
I had severe compensatory sweating after my ETS surgery, which I had for
sweaty hands. I had a reversal with Dr Reisfield in LA. My face is still
dry, no sweat at all on it. My hands only sweat when I work out for a
long time. I had a dream the other day that my hands where sweating like
before. Then I woke up and said thank God it was only a dream. I heard
of people feeling tired, but I had no such experience. I felt fine until
I went outside in the heat of the day. That is when the compensatory
sweating began. My sweating has now diminished, and I feel fine. I
have a scar on my ankle where I had the graft, which is about 4 inches
long. As of July 2002 my compensatory sweating is down about 50%,
and my hands have slight moisture back to them. The other day I even
felt some sweat back to my forehead. My hands only sweat when I workout
at high intensity levels, and then only slightly.
Over two and a half years ago I had ETS-C for
facial flushing, and had to have it reversed due to severe compensatory
sweating (CS or reflex sweating). I got my T2 nerve clamped in Taiwan by
Dr Lin three years ago, and got it reversed after one month. I wouldn't
recommend anyone getting ETS. Using ETS to cure sweating or FF/FB is a
bit like trying to kill a fly with a sledgehammer. I have found Botox a
much more effective method for dealing with FB. I am still waiting
for a return to my normal (non-CS) condition. They say the operation is
reversible, but they do not tell you how long it will take to reverse.
When I have spoken with other ETS surgeons they said that it may take
over three years to completely reverse, and there is no guarantee of a
successful reversal. People who have had ETS and live in relatively
cold climates will probably state that they have no CS or very little.
This is probably true for them, as the ambient air temperature seldom
rises sufficiently high to cause sweating, let alone CS. Unfortunately I
live in Australia, where the summer temperatures rise up to 38%
centigrade and the humidity is usually over 80%. I can't tell you
how aggravating and life destroying CS is. Basically you are unable to
control your body temperature properly. When you have ETS-C for facial
blushing you will no longer be able to sweat from the nipple line up.
This is over a third of your body that can no longer sweat. The nerve
impulses that were normally soaked up by one third of your body are now
absorbed by the rest of your body. Given that over 70% of the bodies
heat is released from your head, this mean that the rest of your body
has an incredible amount of compensating to do! Unfortunately ETS
for me meant just swapping one unbearable condition with another. I am
hopeful that by the end of this year my CS will have gone or have
reduced enough to be bearable. I am now on my 10th Photoderm session
and this is helping my condition immensely. My normally noticeable rosy
cheeks have almost disappeared and my face feels very stable. As of
December 2002, I have had 3 months worth of cutaneous injections of
Botox in the skin of my cheeks and this has effectively cured my facial
flushing. I am due for retreatment in a months time. This does not
paralyse the muscles of the face like Botox injected into the facial
muscles for wrinkles. Flushing can still occur due to heat but to a
lesser extent as it seems to stop the flow on psychological effect of
flushing. I haven't had to use Clonidine for over six months and
have ordered the Strontium cream from the US. Hopefully this will stop
any flushing due to heat or cold. I can always count on the Clonidine in
really stressful situations like public speaking. I try not to use it
unless I really have to, as you develop a tolerance to it over time and
have to keep upping the dosage. As far as I am concerned ETS was the
biggest mistake in my entire life. When I was in Taiwan waiting for the
operation one of the interns even commented to me that this was a pretty
"radical" solution to my problem. I often think what an idiot I was. My
life motto has always been to never do anything in life that you cannot
normally undo the next day. I guess I was impatient and totally sick of
my condition. But, I went straight ahead without adequately researching
the operation and even considered getting the nerves cut instead of
clamped, as I was so sick of my condition. How it had restricted and
ruined my life. But, now i've traded that for some pretty bad
side-effects. The only advice that I can give to someone who is
hell-bent on getting ETS and cannot be dissuaded is: Wishing you all strength in
dealing with your FF/FB and determination in finding a cure. Timbo
(Australia)
29 October 2007 - on this date Timbo McCarty committed suicide. He
was 45. A letter to me from his father, "Hello Meg, I had ETS in Australia and I am very unhappy
with the side-effects. As a result I have lost my job and at 43 that is
not good especially when you walk into an office and immediately start
sweating before you asked a question. I feel sluggish and find myself
nodding off in the afternoon. I had the reversal with Dr Reisfeld on
June 24, nearly four months ago .The changes are that my sweating has
reduced about ten per cent, no more. My blushing has largely remained in
check, my energy levels are extremely low, interest in life the same, I
still experience nerve pains in my back and chest, i.e. pins and needles
type sensations. I'm at the six month mark and I am seriously pissed
off. I am no longer taking legal action because i do not think I would
get a win and I cannot afford it. I have this Job Agency on my back to
go for jobs that i cannot do physiologically and this is adding to my
frustration. As of April 2004 I have now had a Reversal with both
Reisfield and Lin. I am pissed off with reversal no 2 with Lin and I
have no interest in life. I started a degree, but could not stand the
heat in the tutorial rooms. I'm currently taking Neurontin, which is
well worth a try as it has certainly reduced my CS and a little bit of
nerve pain which is my major sticking point. I am currently on 900mg a
day not alot, but I can increase my intake realistically to 2400mg a
day. I would say my CS decreased about 15% and nerve pain about 10%,
which for me is my main concern. Neorontin is targeted at reducing
neurotic pain , and reducing CS may just be a useful by-product.
Vitamins B6 and C have helped my CS a little bit but Neurontin so far
has been very good. I do not feel dehydrated, but then again I do drink
a fair bit of water. Neurontin's main benefit has been a reduction of
extreme burning nerve pains that I suffer but apparently not to many
others do. Neurontin is a prescripiton drug but very expensive. The
vitamins are you're normal vitamins from the chemist recommended doses
are: 400mg of B6 and 1000mg of C.
I had ETS in November 1999 in Gothenburg in Sweden. I was operated by a
doctor at Carlanderska. Facial blushing was the reason I had the
operation. The op gave me a lot of side effects: CS, 25 % reduced pulse,
reduced physically, tiredness, reduced potence and loss of libido, cold
right hand, weakness in feet and arms, sweating in face when eating
strong food and lack of energy. All these side effects I noticed
immediately after the ETS. The information I had from the hospital was
that the only side effects were Horners syndrome and easy CS on the
upper body. I had the reversal in Helsinki May 2002 by Dr Telaranta.
I had to stay in Helsinki for one week because I got an air pocket in my
lung and they had to drain it. From 2 to 4 weeks after the reversal my
CS was much better, and I felt strong and had a lot of energy. Four
weeks after the reversal my CS came back worse again like it was after
ETS. Today, as of January 2003 and 8 months after the reversal, I
feel that my CS is a little bit reduced and I don't sweat as much after
exercise as I did before reversal. I feel stronger physically too. I
haven't started to sweat in my hands, shoulders and face yet, but I hope
I will start. But I have heard that it can take from 6 months till 3
years before the recovery is done...so I have to wait. Bjarne
(Norway) In April 2002 I had ETS for facial blushing and
had Tier 2 cut. I had hideous side effects including CS, hairloss,
anhidrosis, fatiue, and bad thermoregulation. In August 2002 I had a
sural reversal with Dr Telaranta. On the left side T3 to T1 was grafted.
On the right side I had T3 to T1 and T2 to T1 grafted. I unfortunately
picked up horners in my left eye. I also had temporary numbness of my
right arm (sympathetic neuralgia). By early November 2002 I had much
reduced anhidrosis, much reduced eyebrow loss, and better tolerance to
the cold. In November 2002 I had a heavy blow to the chest, which
was still tender after the Reversal. I felt like I had lost gains of
the grafts, and it seems that the vulnerabilty to 'pain disorder' was
realised by the accident. I now have much pain, numbness and coldness
in parts of my body. By March 2002 the 'pain disorder' is worse,
there have been no gains from sural grafts, and my horners remains.
Gigs (Great Britain)
I
have had the ETS reversal with Dr Telaranta in MERANO (ITALY) in
December 2002 with method intercostal. I am feeling well as the Chronic
fatigue is much less, sweating is less and hair scalp disturbance is
much less. The only negative effect is a little sensibility in the chest
muscle near the arms when they're in contact with clothes.
After the surgery I had strong pains in my chest. After ten days I only
had pain on the left to the armpit and a little to the right. It was
annoying. It was enough to feel annoying even if I went on a bicycle and
I could feel an irritation. I have written to Telaranta and he tells me
that because the intercostal nerve was cut it will ache, but will get
less with time. But after a few more days the pain on the right had
almost disappeared, but the left was still annoying. I also felt a light
pain behind the back. After about a month I can tell that the pain on
the right has disappeared and the left has reduced greatly. My hands
feel warmer. After six weeks my sensitivity in the upper chest near
the armpits is reduced by about 30 - 40 %. The pain at this time on the
right front chest near the armpit is total erased. On the left the pain
is reduced every day. At this time I still have also a little pain on
the rear high back near the spinal column. As of February the pain
on my chest is totally erased. Gino (Italy)
I began flushing in early adolescence and it lasted until my
thirties. At 33 I discovered ETS. I researched it as much as possible,
participated in forums and found the best doctor I could. Although I had
a consultation with a local doctor in New York, I didn't want to take
any chances, so I eventually decided to go to Canada to see Dr. Spratt.
He struck me as very honest and open, and seemed to tell me everything
he knew about the procedure. Unfortunately, I think the problem is that
not enough is known, so even with the good surgeons you are really
rolling the dice.
I had the surgery in July of 2000, and for the first year I was in
great shape. My flushing had nearly disappeared, and I had no side
effects except for a slight increased sweating on the chest. In that
year I began to feel more confident and mature due to the decreased
flushing. I was able to perform my job better, socially interact more
easily, and everything looked great. But finally in the Fall of
2001, more than a year after the surgery, I had my first real attack of
CS. I was on my way to work, standing on the train, and the sweat began
to pour off my back and chest. I was wearing a T-shirt (fortunately),
but the sweat soaked right through it and through my outer shirt. I went
to work and attended a meeting, and it took hours before my shirt dried.
Luckily the winter was soon to follow, and the CS disappeared, but I did
notice I was more sensitive to cold. When spring came in 2002 I was in
very serious trouble. The sweat fell off my body like rain. I would see
wet spots on the seats of chairs when I stood up. I had to wear shorts
to work and change clothes when I got there. The most frustrating thing
is that it took forever to cool down, even after going into an
air-conditioned room. Now that winter has returned, and things are
of course much better, but I notice that I sweat if the room is
overheated, which was never the case last year. I also sweat more in
socially stressful situations. So I'm concerned that my situation is
getting worse, and while I used to fear blushing, now I fear heat. I've
tried every imaginable solution - the most effective being Botox, which
was expensive, and I just have too much surface area to treat all the
sweating; and Ditropan, which reduces the extreme sweating. But even
when I'm not sweating, I can get really hot. In fact, when I don't
sweat, I feel hotter. My skin feels like it's burning up. On the other
hand I can also get really cold, and I shiver easily, but this doesn't
bother me as much. The trouble is that it's so variable and
unmanageable. For example, it's usually worse in the mornings. It's now
January, averaging about 30 degrees outside, but I'm still very warm
when I leave my house. I bought a thermometer/hydrometer for my office,
and when I get to work, it's about 70 degrees, 25% humidity, and I'm so
hot I have to take off my shirt and splash cold water on my face. It
takes about a half-hour to cool down. By late morning I start to get
chilled, and I feel cold the rest of the day. I look at the thermometer
and it's still 70/25. At the end of the day I have to go into another
room, which tends to be overheated. Although I don't usually sweat in
this situation, my face gets really hot and I often get headaches. If I
could only sweat from my head I don't think I would feel like that. And
it's weird, not being able to sweat from the head. It's like my head is
disconnected from my body somehow. I never imagined how much I would
miss sweating from my face. I occasionally get GS (not often) when I eat
spicy foods, and when I get a sensation of sweat on my face it feels
like heaven. I'm now looking into a Reversal. I know that my side
effects are not as severe as many others, but the CS and
thermoregulatory problems are torture. I'm very glad I don't flush
anymore, but I didn't think the trade-off would be this bad. Even if a
reversal would only give me sweating back on my face, I think it would
be worth it. Given the information I had at the time, I understand
why I chose to get ETS. I knew the risks, but my flushing was so
debilitating that I took the chance. Unfortunately, I wasn't one of the
lucky ones. As mentioned before in July 2000 I had ETS with Dr.
Spratt, a T2 clamping for flushing. Dr. Spratt was very honest about
the possibilities of side effects, but I took a chance because the
flushing was causing me so much trouble socially. The first year was
great but suddenly in September 2001 I had my first attack of CS, and I
began sweating profusely whenever the weather was hot or humid, as well
as when I was anxious. Because of the late onset of the side effects, I
didn't think a clamp removal offered much hope. In February 2003 I had
an intercostal nerve graft with Dr. Lin. I had minimal chest pain from
the surgery but the skin on the backs of my arms was extremely sensitive
for about a month. I no longer have any discomfort. Two months
post-surgery, I seem to have less of a constant hot feeling, although I
can't tell that I'm sweating any less. From time to time I get the
sensation that something is changing, e.g. a slight sense of facial
sweat, but so far these episodes have been short-lived. My hands are
very hot and dry, even more than before the nerve reconstruction. I'm
still hoping for improvement but I'm not optimistic right now.
I had ETS in March of 1999. I had clammy hands, they were not
dripping. my underarms were constantly moist, regardless of weather.
T2 was cauterized on both sides. I immediately noticed uncomfortable CS
and sought to get this reversed. I had the reversal operation performed
August 2000, 17 months after ETS. Dr. T grafted T1 to T3 on the right
side, but there was more scarring on the left and he grafted T4 to T1. 4
to 5 months after the reversal I first noticed a tingling sensation on
my right forearm when i would go for a jog. after about a year, I
noticed that there would be actual sweat on my forearm. Not sure when I
first noticed, but eventually my right palm and forearm could sweat even
when just sitting in hot weather. In June of 2002 I started noticing
that the back of my neck would sweat during jogs. Also June 2002 I
noticied that my left forearm began the tingling feeling and eventually
started sweating. It has now been 3 Years and 1 Month since
my reversal. When i play sports or go for a long jog, my entire right
arm all the way to the top of my shoulder will have visible sweat. The
right back part of my neck will have sweat as well. Also, my forehead
along the hairline will have very small beads of sweat. Still, in hot
weather without excercising, only my right arm sweats - my head and neck
will not sweat when just sitting in hot temperatures. In the last
couple of months i have noticed that my entire right arm can get
goosebumps when i am cold. At this point, I still have bothersome CS,
especially in warm temperatures. I have had the privelage of speaking
with the very first reversal patient, he had the reversal in 1996. He
said that it wasn't until 2001 that his CS began to diminsh and that his
head and face could sweat. That's at least 5 years after the reversal.
I also know of someone who had a bad knee injury and had a completely
numb leg from the knee down to his foot. He said that 10 years later he
had feeling halfway down his leg. Nerves take a very long time to grow
and function again. Post reversal, we are like babies again, the nerves
trying to grow back and the body relearning how to function. It's hard
to remain patient, but it's necessary. J (USA)
SIMON (GREAT
BRITAIN)
* this is incorrect.
The hotel is paid for by Dr Telaranta.
CHARLIE (U.S.A)
PETRA (Sweden)
Steve (U.S.A)
Paul (U.S.A)
MEG (AUS) * Meg is the contact for AUSTRALIA and may be
contacted through the contacts section of this site.
Jeff (U.S.A)
I have just
found the P.A.S.S.website with the Testimonials from Reversal Patients
page. Two testimonials down from your posting is one from my youngest
son (Timbo)(Timothy) who lived in Sydney.
He had the E.T.S reversal
done eight years ago. He had eight years of living hell as a result of
deciding to have this operation performed in the first place. The
reversal was not a success and after eight years he could no longer put
up with the side effects and committed suicide on 29th October 2007 at
the age of 45.
Feel free to post this on the website if you feel it
may help anyone considering having the E.T.S. operation performed."
Tony (Australia)
* You may contact B through
me
Simon (U.S.A)