2017年1月7日土曜日

My 15 years after ETS Reversal Surgery

ETS: Oct. 2000, Right T3/T4, Left T2/T3
Reversal: Jan. 2002 (only one year after ETS)
Transplant source: Right sural nerve
Doctor: Timo Telaranta (Finland)
Current situation: On the way to recovery

・1 year after
There was no longer a phenomenon in which my back abnormally heats up.
There was little change in Compensatory Sweating.
- It took more time to start sweat when in hot place.
- It took less time to stop sweat when in cold place
- The amount of sweat did not change.
I had been attacked by panic repeatedly since then.

・1.5 years after
I felt that my nerves had connected even to the end of my head and fingers.
After a while, I felt that the flow of nerves around the right shoulder began.
I thought that the left nerve was connected, but right nerve was not yet.

・3 years after
I wrote on BBS for the first time.
I felt that the amount of sweat slightly decreased.
Winkles of my hands had disappeared. but no moisture.
Going out during the summer was tough.
I could only commute. (Commuter trains of Japan are so awful! and I took more than one hour.)
I had the difference of recovery at left side and right one.
- I felt the recovery process of left side was completed.
Only the right hand is cold, even now.

・4 years after
I began to sweat my head.
- I felt that the sensible temperature during summer fell.
I no longer worry about commuting train.
The numbness of the hand was chronic.
I felt suffocated and dizzy occasionally.

・5 years after
My hands did not have enough moist.

・7 years after
It became possible to ride the summer commuting train without suffering.
- I did not need to bring extra shirt to change clothes.

・8 years after
I did not satisfy enought with going out during the summer day.
There were more sweat in the rainy season than in the summer.(The rainy season in Japan is high in temperature and humidity.)
Night sweats have decreased.
I was sweating from the head with jogging.

・9 years after
My panic disorder became intense. I was attacked by it once a week in the summer.
It has become possible to actively go out during the summer day.

・10 years after
I started this blog.
Compensatory sweating had drastically decreased.
But Sweat with panic disorder increased.
Gustatory sweating had decreased considerably.
The sweat of the head during exercise had reached the usual level.

・11 years after
I enjoyed a lot of summer festival.
Panic symptoms often occurred.

・13 years after
Usually night sweats disappeared, but sometimes terrible night sweats came out.
I feel a severe nerves flow in my body.
I got compensatory sweating even with light exercise of table tennis around 30 minutes.
I experienced the most intense panic so far, after that my panic has disappeared.

・14 years after
Abnormal night sweats disappeared completely.
I felt that a thick nerve around an armpit was connected. It was painful and I could not move at this time.

・15 years after
The feeling of flow of the nerve became quiet.
It became active even in winter morning.
Gustatory sweating had completely disappeared.
Hand sweat is still low level.
Compensatory sweating has decreased sufficiently, but it still remains.

・Travel
Since I took reversal surgery in 2002, I enjoy traveling.
Australia (2008), Cambodia (2010), India (2011), Egypt (2012), Peru(2013), Turkey (2014), etc.
It contains a lot of tropical provinces!


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30 件のコメント:

  1. Hay can i ask you

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    1. Thanks for blogging this. I have two questions. When your head started to sweat again, did it start to sweat on both sides? T2 controls head sweating, so that’s impressive if sweating returned on that side as well. Also, are you able to enjoy a 27°C day in the sun again? Thanks.

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    2. The climate in Japan is hot and humid in the summer, but I can go out without any problem even if it is around 30 degrees Celsius. Playing sports may give the impression of being extremely sweaty.

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    3. Thank you, this is very encouraging. My climate is hot but dry, so to be able to enjoy 30° at a park with my kids sounds amazing. About how long after reversal did this temperature become tolerable? And just to confirm, your head now sweats on both sides? Have you gotten a return of sweating to arms, chest, upper back and or neck? Thanks again.

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    4. A reduction in compensatory sweating (though not completely) after 3 years, a slight increase in head sweat and a decrease in body temperature after 4 years changed my situation for the better.

      Currently, the head is sweating regardless of the left and right, and the left arm is a little and the right arm is absent.

      But now, thanks to acupuncture, the nerves in my right arm are actively regenerating. Once this is over, I can report a better situation.

      This is today's diary.
      https://marumarutonton.blogspot.com/2023/03/330.html

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    5. Hi there, I also posted this on your English page, but not sure how often you check. I had two questions for you. First, while it took several years, I’m very happy that you’re compensatory sweating is now at a very manageable level. At this point, do the parts of your body that are now able to sweat once again (head, arms, hands, etc.) start to sweat at the same time as the areas where you experienced compensatory sweating? I had reversal 16 months ago, and while I know I have a very long way to go on my recovery, it’s very uncomfortable that the parts of my body that are beginning to sweat again start to sweat well after my problem areas.

      Also, do I understand from your timeline that about three or four years after reversal, your body was able to cool normally again after exercise? Thank you.

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  2. Hello I want to ask, after 13 years compensatory sweat comes on with light exercise of table tennis around 30 min. Does that mean to say, the sweat only appeared after 30 mins of exercion.

    Or the CS was there in lowered condition all the while when you started playing?

    Can you quantify the whole activity of table tennis in terms of CS( percentage and time period leading upto 30 min)

    I am asking specifically because my piano playing is affected by the CS and it is very similar heat intensive activity and is the very reason i am seeking ETS Reversal Surgery.

    Please shed some light on your experience. Thankyou

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    1. What I wrote in the explanation 13 years later means, "Compensatory sweating has decreased considerably, but it still remains."

      When exercise, heat builds up in the torso, and when it reaches a certain level, sweat flow down like a waterfall. With severe compensatory sweating, even 3 to 5 minutes of exercise can cause to sweat profusely. It's not perfect, but it's a good sign that it's improved like this.

      By restoring nerve transmission to the shoulders, arms and head, heat generated in the torso is dissipated. However, after reversal surgery, it will take years to restore it. I think that rehabilitation similar to motor nerve rehabilitation is necessary.

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    2. Hi, I am clarifying. Even after 13 years sweat could drip from your body like a waterfall when exercised hard within 3-4 mins??

      Piano playing is an intense sport where my emotions run high and I sweat waterfall from my back.

      So I can never be sure I can stop dripping after reversal even. Can u say my back will stop dripping after reversal and after how many years? its such a long wait.

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    3. My 13 years, that is 8 years from now, I no longer have servere compensatory sweating. I haven't checked how many minutes it takes to break into a waterfall, but it should have been a little longer.

      I have almost completely eliminated compensatory sweat this year, because acupuncture treatment has worked very well.

      I cannot comment on the sweat reduction after your reversal surgery. If you can rehabilitate well, you will be many times faster than me, but if you do nothing, the problem sweat may not decrease.

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  3. Thankyou so much for your reply.
    What i gather from it is not so encouraging. My situation is that i cannot sit on the piano and play anything intense.. So much so any emotional piece would drain waterfall of sweats from torso within 2 mins in hot conditions here in India that i cannot sit and play at all.

    It has been nerve wrecking for me and my family and the dilemma whether to go for Reversal considering its limited chances of success and additional trepedious effects on the body.

    I will ask specifically again- take table tennis as reference because i play that too. Would you say CS has improved after Reversal in long term- what percentage decrease on torso and chest after say 2 min of playing table tennis, then say 5 min and then 10 min and then say 15 min- considering you are playing without a fan or ac in hot weather conditions???

    Thankyou.

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    1. At that time, I was playing table tennis in an air-conditioned room during breaks at work.
      I remember that I didn't sweat at all for about 15 minutes after I started exercising, and then I started sweating enough to dampen my shirt. I didn't see this compensatory sweating as a serious problem because I returned to work without changing clothes after my break.

      I haven't tried anything like that before the reversal surgery, but under the same conditions, I think my body started to get hot 2-3 minutes after I started exercising, and I started sweating the same way 5 minutes after I started exercising. The amount of sweat was several times more, so I think I needed a change of clothes. It has improved to this extent, and the time it takes to start sweating has decreased from 5 minutes to 15 minutes, and the amount of sweat has changed to less than 1/5 - 1/10.

      Sweat is closely related to temperature and humidity conditions. Japan has hot and humid summers and cold and dry winters. Therefore, sultry heat is an image, as is the port city of Mumbai. If I went out in the summer, I would start sweating profusely in 5 minutes without exercising.

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    2. Hi, just one more question about the air conditioned environment you were playing in. Was it strong air conditioning or mild. Because in mild air conditioning body behaves just like there is no air conditioning (atleast that's my experience) . If the ac was strong or the air was directly on you then it's a different story. So, was the ac room small and ac strong or just mild.

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    3. At this time, the temperature was controlled in a large room, and the wind did not reach my body.
      I have already finished recovery on my left side, but my right side is going well and will be finished soon.
      Keep in mind that this table tennis episode is in a state of one side recovery.

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    4. Okay thankyou.. so much.

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    5. Hi, again.
      I think I should ask a summarized question.
      How much after so many years of Reversal and using electroacupuncture do you think the body is restored to the original body state? ( 50%, 60%, 70%)
      How much do you see a semblance between your body now and before ETS?
      Do the hands sweat now like the way they used to before ETS?

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    6. It's been 2 years since I started acupuncture, and it's been 19 years since I had Reversal. So, it's later than the time chart I posted above.

      Currently, I am in the midst of a change and have severe fatigue and headaches.
      The recovery on the left side has already been completed, and the recovery on the right side should be completed as well, but I can't report the final form until it's finished.

      I don't even know how many percent I've recovered.
      The dryness of my hands has been resolved, but it's still not moisturizing enough.

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  4. Again thanks for your response.
    From what I understand, under same conditions you mean playing table tennis or exercising in air conditioned environment. Is that correct?

    Would you consider reversal has been helpful if you had to play table tennis or exercise in hot and humid conditions?

    I am specific again because that's what I intend to do with my piano. I don't like air conditioning and it's unnatural sound. And all I concerned about is would reversal help me get some of my piano playing back in natural conditions which may get hot and humid as well.

    From your mention of sweating profusely in 5 min in Mumbai. Is that after reversal now you are talking about? I am not very encouraged and hopeful after hearing that reversal would solve my problem.

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    1. At that time, I was playing table tennis in the rest area at work. So it was indoors.

      I was jogging outside and running near my house, which caused even more compensatory sweating. It was night because I cared about the appearance. But as soon as I got home, I took a shower and changed clothes, so it didn't matter how much I sweated. This type of sweating has also decreased overall, but since I was drenched to my limit after jogging for an hour, I didn't really feel the reduction in sweating that much.

      India trip went after reversal surgery. 40°C in Delhi was good because it was dry, but 35°C in Mumbai was much harder for me.

      Little reduction in compensatory sweating may be felt immediately after surgery. I think it is necessary to wait for recovery over time.

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  5. Okay, I will bother you again last time.

    If you had to play table tennis now, considering hot and humid conditions without an air conditioning environment. Would you say you can observe the same effects of reduction in compensatory sweating- 1/5- 1/10 and time increase from 5 min to 15 min. ( If not, please try to quantify the reduction of CS in hot and humid conditions as well )

    By your observation and feeling. what percentage of heat energy you can feel is restored back in head, arms and shoulders assuming there was no heat flow at all to head and arms after the ETS surgery and they were completely dry?

    I am sorry, I have too many questions to ask. You are most humble and patient to reply in details.

    Thankyou again.

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    1. You are very welcome.

      If I were to do the same exercise today outside of hot and humid conditions, I'd expect much less compensatory sweating, though I don't know the numbers.
      While receiving acupuncture treatment, I feel that nerve transmission to my shoulders and arms is gradually returning. I still feel inadequate, but I'm hopeful that once treatment ends this recovery process, I'll be back to 100% normal.

      It was two years ago that I started acupuncture treatment, and until then I had only natural recovery through exercise. If you get acupuncture early after reversal surgery, you'll probably recover faster than I did.

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    2. Hi, I hate to bother you again.
      But much less.. means? Please quantify that in some way. It will help me make my decision... could you compare jogging before and after reversal? ( Reduction of CS and time delay )

      I know my enquiry might sound repetitive and bugging but I am quite distressed over the decision of Reversal.
      Please help me if you can.

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    3. Currently, the burden on my body due to acupuncture is so great that I can't do enough activities. Besides, it's winter now. Therefore it is not possible to measure current compensatory sweating.

      I hope my experience is helpful. However, the procedure I received was 20 years old, so it is good to check the latest procedure and other cases as much as possible.

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    4. Thankyou again. One last question please.
      Has the priority for heat dissipation changed after reversal. Means does the heat flow to the head first like it was in the natural unharmed body before any kind of surgery?
      If the priority of heat flow is the head first. Then I might think of getting some equilibrium in my playing if I play carefully.

      I am sorry I ask too many questions but I couldn't get in touch with anyone who has had reversal and can speak about long term results.

      Thankyou

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    5. you are welcome
      I made an explanation with an image diagram. I want to say that rehabilitation is far more important than my recovery timeline.
      thank you.

      https://marumarutonton.blogspot.com/2023/03/image-of-changes-in-sympathetic-nerve.html

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    6. Sorry it doesn't answer my question??

      Does the heat goes to head first when you start with an activity? Can you feel it? Ofcourse it may not be like a natural body?

      I do understand it is a slow process. Thankyou.

      What percentage as compared to the natural body can u say heat/ sweat has been restored to the head? Say in the height of activity or extremely hot conditions.

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    7. Sorry for the late reply.
      I'm doing acupuncture now, and I have a tremendous recoil, and I'm noticeably down.
      You can read my recent Japanese articles with Google Translate.

      In the midst of this change, it is not possible to measure how sweat comes out, so please wait a little longer.
      I have already recovered my left arm and am in the process of recovering my right arm. Once this is done, I expect to be able to report a fairly good evaluation result.

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    8. Thankyou, it seems electroacupuncture is good therapy to revive the nerves. Good luck to you on your recovery and thankyou for all your support.

      I am considering ETS reversal with dr. Tuomo Rantanen this year to get my piano playing comfort back.

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  6. From what I got from all this conversation is body though it heals by restoring nerves transmission to shoulders arms and head over a period of time but hot conditions or humid conditions can evoke CS erratically as well. Like you said, with severe CS body can sweat profusely in 3-4 mins as well after reversal.
    (Please if you can elaborate reduction of CS quantitatively it would be nice)

    ETS turned out to be the worst decision of my life. I had to sacrifice the activity dearest to me. I am not hopeful or confident reversal would solve my problems. When I play body shoots heat sporadically in random bursts since it is quite an emotional journey to play the piano.

    Thanks for all your support. ETS is a deadly surgery for musicians like myself and I am now posting on various blogs for warning others and spreading more awareness.

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