Life After ICNG
One Week After ICNG (August 30, 2003)
OK, so it's exactly 1 week post-ICNG and so far I've definitely seen an improvement. Keep in mind that I
used to take 6-8 mg of Robinul a day to combat CS/RS. I haven't taken any Robinul since the day before
ICNG. Some of the things I've noticed:
My overall sweating amount has definitely decreased massively.
No sweat on my face so far, but I do notice oil being produced which I never had before ICNG.
I have a much better sense of well-being. I can't exactly explain the feeling -- maybe there's some
anesthesia still floating around in my blood.
I feel quite a bit cooler all the time. I'm always turning down the AC in my apartment. I never would
have done that before except to save electricity ($money$).
By "passing" the CS/RS test, I mean just detecting a little bit of dampness on my lower body (no dripping).
In fact, now the lower-body dampness actually has a cooling effect on me (what a concept). Here are some of the CS/RS tests that I've "passed" so far:
Driving my car after it's been sitting in the hot sun all day
Folding my laundry right when it comes out of the dryer
Having a conversation with a complete stranger while doing my laundry
Going for a long walk and stopping suddenly (my CS/RS used to be especially awful whenever I'd *stop* something)
One of my long walks was checking out all of the Harley Davidson Motorcycles in town this weekend. Milwaukee
is the home of these motorcycles and this weekend is the 100th anniversary of the company. Motor scooters
are to Taipei as Harleys are to Milwaukee:
Harley Davidson Motorcycles #1
Harley Davidson Motorcycles #2
Harley Davidson Motorcycles #3
Harley Davidson Motorcycles #4
Harley Davidson Motorcycles #5
Also, today I took my 2 stitches out myself. It was much easier than I thought. I used a cuticle cutter
(like a nail clipper, but with a really sharp angled edge) and then cleaned the area with alcohol. The
wound with the stitch was the one from the drainage chest tube. That's by far the ugliest of the 3 wounds
on each side, but even so, it isn't so bad -- it looks like it'll pretty much fade in a few weeks or months.
My return of energy is kinda hard to measure right now. I mentioned that I do have a much better sense
of well-being, but my chest is still pretty sore and numb so there isn't much I can do except take long
walks. I can't wait until I can go back to the gym and resume running. But that's definitely out of the question for at least another 2 weeks.
I've put reminders on my calendar to update this site weekly after today. In my never ending quest for
knowledge, I'm taking 4 classes at University of Wisconsin - Milwaukee this semester and that starts next week.
So between school and working full time, I'll be pretty darn busy and I'll have many opportunities to test
out the ICNG.
"Quality of Life Index Number" = 7
Two Weeks After ICNG (September 6, 2003)
Time flies and it's already two full weeks post-ICNG and so far so good. This week I returned to
work and started night school again. So, it's safe to say I've been very busy.
I have mostly good news but I'd like to get the bad news out of the way -- the pain. I don't mean to
sound like a wimp or sissy, but I have to admit, I thought the pain would have faded a bit more, but
I think the pain is pretty much the same as it was last week. It fluctuates, though. Sometimes it feels like I just did 500 push-ups (not that I really could). Other times, it feels like somebody
whacked me in the chest with
a baseball bat. Then sometimes, it feels like a bad sunburn on my upper-arms, upper-back and chest.
Sleeping is still a bit uncomfortable. Walking or using stairs causes weird chest pain. The pain is
especially bad when I first wake in the morning and as I'm getting tired at night. I don't
like taking aspirin or pain-killers, so I've found the best way for me to ease the pain is to take a long, hot shower.
I have a habit of rereading all of the posts on the two or three internet forums related to ETS and I
stumbled upon one guy's post who had the ICNG and he made a comment that he felt like he was walking
like Al Gore (walking stiff like a robot). I definitely know what he means now, because the pain is less
if you don't move your arms while walking. In fact, if I don't move at all, the pain pretty much doesn't
exist.
Oh yeah, a few other minor things. My hands do seem to be a bit drier than before the reconstruction. This
isn't too troublesome for me -- lotion on my hands once or twice a day and I'm OK. Also, I seem to have
an unquenchable thirst. I have no idea how this could be related to ETS or ICNG, but it's something
that I just started noticing within the past week or so. It doesn't bother me, it's just kinda interesting.
I'm sweating less, yet I'm thirsty all the time.
OK, with the bad news out of the way, everything else is pretty much good news. The lack of CS/RS
continues to make my confidence grow. This past Wednesday, I was about 10 minutes late to a meeting and
when I walked through the door my co-workers were just approaching a topic where I knew I'd be the main
contributor. All eyes were on me for a good 15 minutes while I gave my input. The meeting room was small and on the warm side. There were also two strangers (sales people) interrogating me in this meeting about what I want or need to make their product better. I had a "safe CS shirt" on and I kept waiting for that awful dripping feeling on my chest/stomach, but all I ever got was a slight dampness on my lower back.
The very first day back to work after my "two week ICNG vacation" I was sitting at my desk and made a
comment along the lines of "man, is it cold in here or what?", and the guy who sits next to me said, "I
think it's hot in here". I have a mini six-inch fan on my desk for the summertime because the AC in our
building isn't the best (many other people have little fans on their desk too and I'm sure that not all of them have had ETS) and I found myself turning it on
and off all day (in the past, I'd just leave it on all the time).
Speaking of returning to work, I remember being nervous about returning to work. Maybe I was nervous since
this would be the first time seeing all my co-workers in 2 weeks and also since the ICNG. I was seriously
considering taking some Xanax when I talked myself out of it. I try to use the Xanax only when absolutely
necessary and I'm glad I didn't take any because once I walked into the office, I actually felt pretty good
and relaxed.
I'm also in a much better mood and as a result, much more social than usual. Again, I'm hoping as time goes
by my confidence will continue to improve. I'm able to tolerate and sometimes enjoy the sunlight now. I'm not sure if this is because I'm in a better mood or what, but in the past, any sunlight would trigger CS/RS and I'd avoid the sunlight like a vampire. The shades in my apartment and my office were always down and I've actually found myself opening them to look outside during the day.
I'm taking night classes Monday through Thursday nights after work. Monday was a holiday, so I had 3 night classes this week. I refuse to pay for parking, so I end up parking about 4 blocks from the University.
In the past, between the time I'd arrive in the classroom and the time the class would start, my body would
begin sweating (from the walk) like an overheated car stranded on the interstate. Not so this week. I'd only get a thin
film on my body.
I must admit, that my mind still seems to be expecting CS/RS all the time and sometimes I find myself lifting
up my shirt when nobody's watching, only to discover a tiny bit of dampness on my trunk. This kinda makes
me wonder more about the distinction between compensatory sweating (CS) and reflex sweating (RS). I know
Dr. Lin makes the distinction and a post on ezboard.com got me thinking more about this.
A gentleman on the board gave an analogy that CS would be like having a string of light bulbs connected
to a battery. If you get ETS (cut the wires to some of the light bulbs), your lower body will sweat more
(the other light bulbs will glow brighter because the same amount of power is being sent to fewer bulbs).
I think most people consider this a good analogy of CS.
Then there is RS. I liken this to driving a car with a couple of missing spark-plugs and a broken
speedometer. When the driver needs to go somewhere (the body needs to get rid of excess heat), he
keeps pressing the gas pedal too hard (the body sweats too much) because the speedometer isn't giving
him an accurate reading (feedback isn't reaching the brain). This is just my theory anyways.
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I think that description of RS describes the main reason I wanted the reconstruction. In fact, I think
that it describes my condition pre-ETS. I remember before ETS I just thought my brain never "got the news"
that my body isn't hot anymore and would just flood my face with sweat like a giant radiator in a car. I
noticed this especially *after* something (a walk, shower, bike-ride, etc). Or even worse, the sweat would start *during*
social interaction. Then *after* ETS, while my trunk & lower body started to sweat in an honest effort to remove excess heat, it never "got the news" that my body isn't hot anymore so would keep pumping out
the sweat on my trunk & lower body. But, I'm sure that sweating in an area restricted by clothing does make it harder for the body to remove excess heat compared to sweating in an unrestricted area like the head. But even when I'd be wearing shorts and no shirt in the summer, the sweating was awful, so not all RS/CS could be explained by clothing "getting in the way".
OK I'm rambling now, back to my ICNG recovery. Sometimes I now detect a little moisture on my upper-lip. It's nothing I can see in a mirror, but I just
feel a nice cool feeling on my upper-lip while I'm breathing. It's actually a nice feeling after 3 years of
a bone-dry head.
I still don't feel "over the hump" yet because I remember reading other people reporting a "short lived
nerve graft benefits". I'm not going to fall into the same trap I did after having ETS. The trap of "oh,
this is great, it's only been 2 weeks and I'm doing great!". I know that things can change quickly. It's only been two weeks so far, so I'm just keeping a positive attitude and trying
to keep everyone posted on my story.
"Quality of Life Index Number" = 7
Three Weeks After ICNG (September 13, 2003)
The only big change I've noticed between the last update and now is that the pain has diminished nicely.
I can now sleep very comfortably (during the last week or two just rolling around in bed was kinda painful -- but not the past few days). If I had to estimate, I'd say that the pain is about 80% gone and the numbness is about 50% gone.
As a reminder, the reason I decided to have the ICNG was 80% for RS/CS and 20% for loss of energy. Although
looking back, my lack of energy may have been partially due to my unwillingness to do things that would cause
horrific RS/CS.
I still notice some minor moistness on my upperlip, but nothing visible in a mirror. I also notice "things
happening" on my head -- kinda like the pins & needles feeling I had for a few weeks after the ETS a few years
ago. I hope that's a sign of things to come, but it's hard to say.
My hands are still drier that normal and I've had to buy more hand lotion. It's nothing terrible though. I
remember for the first two years after ETS, my hands were bone dry and I'd go through hand lotion like there
was no tomorrow. The third year after ETS, I didn't seem to need quite as much, though.
Well, that's about it so far. So to recap my current status, since ICNG:
I've seen a big reduction in CS/RS
The pain from the surgery is 80% gone
The chest numbness from the surgery is 50% gone
My hands are drier than immediately before ICNG
My attitude and quality of life is definitely higher now
"Quality of Life Index Number" = 7
Four Weeks After ICNG (September 20, 2003)
OK so it's been exactly 4 weeks since ICNG and this should, in theory, be a big milestone. I remember
Dr. Lin said that it "takes at least one month to see the final results of ICNG". So far, I'm doing pretty
good. The CS/RS is still much better than before the ICNG. I do notice it creeping around when I'm in
very high-stress situations, but it's still not nearly as bad as it used to be.
Also, today was the first day I went to the gym. I did a light workout and I felt great afterwords.
I did 30 minutes on an exercise bike and then a light workout with free-weights. I'd normally run a
mile or two, but any high-impact activities like running still kinda hurt my chest a little. I
definitely noticed moistness on my upperlip while exercising (I mentioned this before and wasn't too sure about
it) and I must admit it felt pretty good. I noticed that my armpits sweat more during exercise than before
ICNG and it seems to be pretty symmetrical. Again, no visible sweat on my face, but I notice something going
on up there that's hard to explain. I have to admit that I've been feeling kinda lazy about not exercising because it's been a big part of my life since highschool and later in the Army. So this is
pretty important and I'm feeling much better as a result.
I received the operative/surgical report on the ICNG that I requested from Dr. Lin a while back. It was
a bit different that I expected. It had more sketches and less writing. He requested that I not post it
on the internet so I'll respect his wishes and not do that. To be honest, I don't see too much different
on the operative report than what has already been posted on some internet forums. Dr. Lin did say that
"there are still some very special and important tiny procedures when perform ICNG,
which is difficult to describe by words". The general procedure is pretty well known.
It seems to me that the ICNG procedure may vary depending on how the original ETS was done. I had
a T2 ETS by cutting the trunk as it crossed the 2nd *and* 3rd ribs (above *and* below T2).
Dr. Lin divided the 3rd intercostal nerve a few inches after it left the T3 ganglia (I'm guessing about
the "few inches"). He then divided the main trunk at the upper border of the 2nd rib. I think this is
basically "freshening up" the main trunk. He then rotated the free end of the 3rd intercostal nerve
and connected it to the "freshened up" area of the trunk (just below T1 ganglia).
I know of at least 1 person whose ETS was T2 cut above the T2 ganglia only (note; only *above* T2, *not*
below). I believe if Dr. Lin thinks the T2 ganglia is OK, then he'll use a 2nd intercostal nerve and reroute
it to the T1 area (there is also some question about if he used to "freshen up" the main trunk around
T1 before connecting the intercostal nerve to it).
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I'd say the pain is about 90% gone and the numbness is about 75% gone. I'm feeling the pain and numbness
fading away further every day. Well, I can't think of much else to say. I'm going to bump the
"Quality of Life Index Number" up to 7.5 because I'm feeling pretty good about being able to resume
going to the gym.
I'm also going to start doing these updates bi-weekly instead of weekly. I think the updates will be
more useful that way. Well, that should about do it for this update.
"Quality of Life Index Number" = 7.5
Six Weeks After ICNG (October 4, 2003)
It's been exactly 6 weeks now and 2 weeks since my last update. Nothing much to report especially
because there's been a bug going around and I caught a cold last week and it caused me to feel
like crap for a good 5-6 days. I've been coughing and sneezing all week. At least I can cough and
sneeze now without any pain. Let me tell you that for the first few weeks after ICNG, a cough or
a sneeze would feel like somebody was stabbing me in the chest and back.
I get the feeling that my anxiety and "awareness level" is creeping back to what it was before ETS. And
I don't necessarily like that too much; all I can do is deal with it. Before ETS, I remember myself
always being in "overdrive": noticing *everything* about my surroundings, nit-picking all of my own work
and that of others, etc. There's been a few times where I knew I'd be in anxiety producing
situations (like *big* meetings, presentations at work/school) and I took xanax and *robinul* before
the event. With that combination I feel very good during the event, but I still try only to take
it when I need to. I think I mentioned before that the ICNG seemed to work better on RS than on
anxiety-related CS (at least for me). But overall, things are still OK. The way I look at it is
before ETS, if I didn't take big doses of Robinul, I was abolutely miserable and sweaty. So, I
don't worry too much about taking a little Robinul after ICNG.
The pain is about 99% gone. I think I'm going to start running again this weekend. Don't get me wrong, I
can still tell I had surgery in the chest area, but I would't classify it as pain. As far as the numbness
goes, I can now feel 4 distinct "numbness bands". There are two 2 inch by 4 inch bands just below my nipples and another 2 bands at the same level on my upper back. The measurements are just rough estimates
but seem about right. Again, I only notice it when I'm trying to notice it (or in the shower with the
water hitting my chest). Dr. Lin used my 3rd ICN for the graft, so I'm sure a 2nd ICN graft would
cause different areas of numbness. I still think the numbness is slowly going away because I remember
for the first few weeks, a big chunk of my chest was kinda numb.
One of my many bad habits is enjoying foolish events like WWE (formerly WWF) shows when they
come to town. Even though I know it's fake, it's good entertainment -- it's quite a show with the
music, drama, fireworks and high-flying events. Anyways, the WWE came to Milwaukee this past Tuesday and
I got 2nd row seats. I took a few pictures:
WWE Picture #1
WWE Picture #2
WWE Picture #3
WWE Picture #4
I'm going to lower the QOL Index back down to 7 because of my cold, and the need to take robinul/xanax
before big events still.
"Quality of Life Index Number" = 7.0
Eight Weeks After ICNG (October 18, 2003)
It's been eight weeks since ICNG and I don't have much to report, so I'll make it brief:
The CS/RS is better than before ICNG, but my lower-body still sweats more than before ETS.
The back of my head and neck occasionally feel cool (moisture?).
The pain is 100% gone.
Some numbness still exists.
My hands are very dry.
I've had a crappy last 2 weeks at work. I had to go out of town all this past week with several people
from work (most of whom I don't like and annoy me constantly). The week before that I had to go out of
town with different people from work who also annoy me. Then again, maybe I'm just being difficult --
no, that's not possible. ;-) Oh yeah, that means I've missed 2 weeks of night-school and this next
week I'll have more exams. Oh joy!
As far as the CS/RS goes, it seems OK and only kicks in when I'm extremely anxious
about something. On a related note, I was shopping the other day and picked up some new
Under Armour shirts. These shirts are terrific! I wish I would have found these earlier. Even though my CS/RS is better now, these shirts fit tightly and have a nice
cooling feel to them. After ETS I bought several coolmax shirts, but they were kinda itchy after a few
washes. These Under Armour shirts are super smooth and feel very cool.
I'm going to slightly lower the QOL index from 7.0 to 6.9 just because overall, I feel a little worse
right now. The travel arrangements and my work schedule the past 2 weeks didn't allow me to continue my physical
rehab (getting back in shape) and I'm feeling out of shape.
"Quality of Life Index Number" = 6.9
Ten Weeks After ICNG (November 2, 2003)
Today is actually 10 weeks + 1 day after ICNG and things are pretty hectic around here. I have another bad habit which I've learned to keep in check the past few years -- coffee. I've been pretty busy the past few weeks with work and sometimes find myself guzzling way too much coffee which causes some CS/RS. Nothing too bad though -- still better than before the ICNG. Another interesting thing I've noticed when I've overdosed on caffeine is that my head tingles much more than normal and my armpits sweat more than they have since ETS.
I'll try to summarize my current status again:
Less CS/RS than before ICNG, but I notice a *little* more trunk sweating than immediately following ICNG, but some of this could be due to my excessive coffee intake. I've thought of switching to decaf, but that would be like drinking non-alcoholic beer. What would be the point?
The pain is 100% gone except that I occassionally notice a sharp pinching feeling a few inches behind the incision points. This maybe happens a few times a week on each side of my body. The weird part is that it isn't at the incision points, it's behind it. This doesn't bother me.
I think more of the numbness is fading away. I don't really feel distinct bands of numbness anymore, just a *slightly* less sensitivity to touch in my chest area. I couldn't care less about this little numbness.
I've noticed more tingling feeling on my forehead and back of my head. When exercising, I feel a *little* moisture on my upper-lip.
I feel much better after working out now than I did before. I'm not sure if I'd call it a "runner's high" yet, but I definitely feel like I've given 100% after a work-out.
My hands are still pretty dry (drier than before the ICNG), but that is easily taken care of with lotion.
Tomorrow morning, I'm going out of town for a few days. I checked www.weather.com for the destination and the high temperatures are 83-86 degrees F (29-30 degrees C), so I'll see how I feel in warmer weather.
"Quality of Life Index Number" = 6.9
Three Months After ICNG (November 23, 2003)
I've been re-reading my journal and compared to August & September, the results of the ICNG have faded a little. Instead of a "massive reduction in sweat", I'll now have to say that the results are only "pretty good". A few other factors that make things difficult to judge:
I'm more nervous and anxious now than pre-ICNG.
The extra anxiety seems to trigger uncomfortable dampness in some situations --but rarely any dripping sweat.
But, the weather is cooler now.
As I mentioned before, I'd sometimes take Robinul to deal with the anxiety-related CS/RS. Robinul seemed to help more than any other medications I've tried. But, one medication I never tried was Ditropan
(oxybutinin). I figured I'd experiment with it to see if it helps more or less than Robinul. I saw
somebody post a link to order Ditropan
over the Internet so I ordered myself a bottle last week. Call me naive, but I was surprised that I didn't need a prescription or anything -- you've gotta love the Internet.
The Ditropan arrived in 2 days and so far, I'm amazed
at the results. I don't remember being so completely dry -- ever. My entire body is nice and dry whenever I'm on it. Maybe my body was getting used to Robinul since I've been taking it for over 3 years. The only side-effect
from the Ditropan that I've noticed is a dry mouth -- very dry. I don't mind because that means it's working. And I've always been a big water drinker. The weird thing is that Ditropan is mostly used to treat bladder-control problems. It seems that it has a side-effect of drying the body. This is good!
Now the hard part. What should my QOL index be? On one hand, I think the ICNG results have faded some. If it weren't for the Ditropan, I'd put my QOL index down to about 6. But, the Ditropan clears up all remaining CS/RS much more so than the Robinul did. Knowing
that I'll be completely dry puts me in an excellent mood all the time. All things considered, I think my QOL is back to the point pre-ETS, when I was just on Robinul.
My next update will probably be in 3 months (6 months post-ICNG). I'll see how things are then.
"Quality of Life Index Number" = 8
Six Months After ICNG (February 22, 2004)
Tomorrow will be 6 months since my ICNG with Dr. Lin in Taiwan. Not much is different now compared to my last update 3 months ago. Keep these things in mind while reading:
It's winter up here. And winters are pretty cold in Wisconsin.
I've been taking two to three 5mg tablets of Ditropan daily to eliminate any remaining CS.
While keeping those things in mind, I think I am seeing improvement compared to this time last year (pre-ICNG). I don't know how much of it is because of the ditropan, the ICNG or the psychological thing (knowing I had something "reversed").
Physically, I'm feeling much better. I'm in the gym more now than ever. I started doing something new a few months ago at the end of every workout -- I run up and down 15 flights of stairs 4 times (without stopping). That really gets my heart going and even though I sometimes feel like I'm about to die afterwords, I still feel pretty good. I think this demonstrates that now I can at least get my heart rate up pretty high.
A few other things:
My hands are still somewhat dry, but not as dry as immediately following ICNG.
No noticeable sweat/moisture from the head.
While working out, I notice the "pins and needles" effect on my arms and shoulders.
Overall, I think the ditropan + ICNG has worked pretty well for me. I don't think about CS bogging me down all the time. As an example, last month we had a "cleanup day" at work that required us cleaning up our storage area for some stuff. This involved moving lots of things around (taking them to the basement, throwing things out, etc). Normally I would have felt the sweat dripping after a few minutes of physical work. But now it would take several hours of moderate work like that for me to feel any dampness. But, I still think the true test will be this summer.
"Quality of Life Index Number" = 8
Nine Months After ICNG (May 23, 2004)
Today is exactly nine months after having Dr. Lin's ICNG procedure. It's slowly beginning to warm up. A few days have been hot and humid. Things are going very well as long as I take Ditropan. I take two 5mg tables when I first wake up and two 5mg tablets around 1pm. I'm almost hesitant to stop taking it because of how comfortable I feel while using it. But, I think I'll experiment in the middle of summer and see how bad my CS is without Ditropan. I'll report back the results then.
Overall, I feel very good. I no longer worry about sweating through clothing at work (or anywhere else for that matter). I'll even wear light colored shirts. Previously, that would have been a big no-no because it would make dripping CS very obvious.
Just like I mentioned in my last update, while I'm doing strenuous activities like running or working out at the gym, my arms and shoulders get an itchy, pins and needles feeling. No sweat, though. But it reminds me of the mild GS feeling I used to get when eating things like German potato salad. Even though there is no sweat on my arms/shoulders, the itchy pins & needles feeling is the same.
I'm honestly not sure how much the ICNG has helped. I know the Ditropan definitely has and anyone who emails me asking about the ICNG for CS, I urge them to try Ditropan and/or Robinul. The more people I hear of getting ICNG, the lower the success rate seems to be.
"Quality of Life Index Number" = 8.2
2.5 Years After ICNG (February 23, 2006)
It's been quite a while since I've updated this site, so here goes. The more time passes, the less helpful I think the ICNG was. About a month ago, I ran out of Ditropan and went without it for about a week. I definitely noticed CS with only minor physical activity (I was still taking the occassional Robinul that I had left from a while ago). And keep in mind, it's pretty cold and dry up here right now.
There has been absolutely no return of sweat to my face -- even during heavy exercise. But, I never really feel overheated. I've pretty much accepted that I'll have to continue taking medication if I want to avoid CS. I think the ditropan has been working as well as it always has. It's pretty much a life saver for me. Last year, when I went to my regular doctor for a physical, I told him that I was taking ditropan to combat the CS. He was happy that it was helping, but didn't really have too much to say about it. I'll probably schedule another physical soon and this time ask him about the long term side-effects.
Am I mad at Dr. Lin? No, not really. The ICNG at least gave me hope that I needed very badly. Shortly after the surgery, I asked Dr. Lin for the operative report from the ICNG. He asked me not to post it on the internet, but I don't think I'll ever see him again, so here is a copy of the ICNG operative report.
I'll keep my QOL index at 8.2 -- I'm learning to deal with things. No huge changes in the past year.
"Quality of Life Index Number" = 8.2
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