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2014年4月16日水曜日

Long-term follow-up query after the Endoscopic Thoracic Sympathectomy (ETS) reversal operation

I reported this to Dr. Rantanen and Dr. Telaranta.

1. What was the reason(s) for ETS?

A. Hand sweating
B. Facial sweating
C. Underarm sweating
D. General sweating
E. Blushing
F. Social phobia
G. Trembling of the hands?

2. What was the degree of your symptoms before ETS?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Something else? if yes, what?
Foot Sweating
1=normal, 2=mild, 3=severe, 4=unbearable

3. What was the degree of your symptoms after ETS?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
It is because my hands became too dry.
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Trembling of the hands
1=normal, 2=mild, 3=severe, 4=unbearable

4. Did You have fatigue after ETS? If Yes, was it mild, moderate or severe?

Nothing.

5. What kind of energy level did You have after ETS?

A. Normal, B. mildly lowered, C. Moderately lowered, D. Severely lowered

6. Where and when was the ETS done?

Nov. 2001. Japan.

7. What was the reason(s) for the ETS reversal operation??

It is because I had severe compensatory sweating.

8. What was the degree of your symptoms before the ETS reversal operation?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
It is because my hands became too dry.
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Trembling of the hands
1=normal, 2=mild, 3=severe, 4=unbearable

9. When the ETS reversal operation was done?

Jan. 2002

10. What was the degree of your symptoms 3 months after the ETS reversal operation?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Trembling of the hands
1=normal, 2=mild, 3=severe, 4=unbearable

I didn’t feel the change in three month after the surgery.

11. What was the degree of your symptoms 6 months after the ETS reversal operation?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Trembling of the hands
1=normal, 2=mild, 3=severe, 4=unbearable

I didn’t feel the change in six month after the surgery.
There was no trembling of the hands immediately after the surgery. but it occured after a while. My hands are always trembling while awake.

12. What was the degree of your symptoms 1 year after the ETS reversal operation?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Trembling of the hands
1=normal, 2=mild, 3=severe, 4=unbearable

13. What is the degree of your symptoms now?

A. Hand sweating
1=normal, 2=mild, 3=severe, 4=unbearable
B. Facial sweating
1=normal, 2=mild, 3=severe, 4=unbearable
C. Underarm sweating
1=normal, 2=mild, 3=severe, 4=unbearable
D. General sweating
1=normal, 2=mild, 3=severe, 4=unbearable
E. Blushing
1=normal, 2=mild, 3=severe, 4=unbearable
F. Social phobia
1=normal, 2=mild, 3=severe, 4=unbearable
G. Trembling of the hands
1=normal, 2=mild, 3=severe, 4=unbearable

14. Do You have fatique now? If Yes, is it mild, moderate or severe?
If Yes, is it milder than after ETS?

I have sometimes lethargy feelings rather than fatigue. It occurs in unstable early spring season or rainy season. The degree is severe at that time.

15. What kind of energy level do You have now?

A. Normal, B. mildly lowered, C. Moderately lowered, D. Severely lowered
Sometimes I am in bad condition. But almost normal.

If energy level is not normal now, is it better than after ETS?
Absolutely yes. My energy level has greatly improved.

16. Did you get some new symptom(s) (Pain?) after the ETS reversal operation? If Yes, how long this symptom lasted? Or is this symptom still?

I feel my nerve flows after the ETS reversal operation. At first, it was in my left chest. One and a half year later, I felt my nerves were connected.
After that, the same occurred in my right chest. Though 12 years have passed, I feel the flow even now.
When  I get nervous, ride on train, or am outside in summer, feel the flow of my nerve become violently. Sometimes my sight was lost.
I also experienced panic symptoms. I believe that it occurs when my nerve moves extremely violently from abdomen to upper side. It was terribly painful. I don’t have this symptom recently. I think that it is because the balance of the upper half and the lower half has been better through the bypass which was made by reversal surgery.
I still feel my nerve flows. My hands were trembling for it.
I felt dozens of times that my nerve was connected with crunch noise in my head or shoulder. Without pain, I think that it occurs when the nerve move into withered nerve. Usually it is happening in a different place.

I also feel that the nerve to come out from (the gap of) shoulder blade may break and block the flow. As I hear the noise of  snapping at the place, I feel that nerve repeatedly flows and stops. That flow leads toward both arms and head, so therefore I think nerves of various point is connected.

Now I feel the flow of the median nerve of the right arm. When nerve of right shoulder flows, nerve of arms also flows violently and trembling of right hand also occurs.

I often felt fatigue of the muscles of the arm around several years after I took reversal surgery. After that I felt the pain of the shoulder.
In the process of my recovery, I felt my eyelids lightened, the amount of saliva was increased, sensible temperature drops with increasing sweat of the head, and concentration and appetite recovered.

As I felt so many small changes immediately after reversal surgery, I found my nerve had surely connected. But in terms of compensatory sweating, during the first 3 years, my benefit was only like this. “It took more time to become sweaty when I was under summer sunshine”, “It took less time to stop sweat when in air-conditioned room”, so there was no change in the amount of sweat flowing peak.
It was more than 3 years to reduce the amount of flowing compensatory sweating and to get acceptable effects.

17. Would you still be ready for the ETS reversal operation now when you know the results of ETS reversal operation?

Surely, I will take this operation.
I know the possibility of unconnected, enormous amount of time of recovery, particular importance of rehabilitation doing exercise, and severe painful in the process of recovery. But I know the benefits of receiving more than that.

18. Can You say what was the severity (Give the number between 0 and 100; 0= the best possible situation, 100= the worst possible situation) of your symptoms before ETS, after ETS and now after ETS reversal operation?

Hand sweating
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

Facial sweating
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

Underarm sweating
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

Not the amount of sweat but the score of severity.
I sweat more than before ETS, but it is no longer a big problem.

General sweating
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

Blushing
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

Social Phobia
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

I became to avoid having contact with people because of compensatory sweating.
Now, it is no longer a problem at all.

Trembling of the hands
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

During awake, hand (especially thumb) is always slightly trembling, though I don’t think serious problem.
As this trembling become violently when I am in tense, it is also usual for me.

Gustatory sweating
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

I lost appetite after ETS. I could not have contact with others. So I had eaten only one meal a day at home.
I began to eat spicy food at much later, after I took reversal operation, but I sweated pretty hard.
I may sweat more than usual now. But I found many heavy sweater than me, so I don’t mind about it.

What was/is your general well-being? (Give the number between 0 and 100; 0= the best possible situation, 100= the worst possible situation)
Before ETS  0-1-2-3-4-5-6-7-8-9-10
After ETS 0-1-2-3-4-5-6-7-8-9-10
Now 0-1-2-3-4-5-6-7-8-9-10

I bothered about foot sweating during winter. Though I had no changes not only after ETS but also after reversal, I took good benefits of drionic of iontophoresis machine. I also quitted smoking and finally sweat of the foot stopped without drionic. I am no longer worried at all now.

When I go out in hot summer, the sweat running down in drops. But both the number of sweat drops and the amount of it are reduced significantly. I also sweat from my head now, so it can cool head part without burning head.  I freely go out in summer, because even if I sweat I soon stop sweating after changing clothes.

I travelled to Egypt three years ago, and to India two years ago. Though both countries were extremely hot, I enjoyed sightseeing. This may be the evidence that I am fully recovered.

I have a question.
As described herein, I have a feeling of nerve flows from abdomen to hands and head through chest after ETS reversal surgery.
I think there are countless places after ETS where sympathetic of the upper body  had been withered, and recovery progresses flowing to the withered nerves after reversal surgery.

Is it right idea?

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6 件のコメント:

  1. Hi,

    can I ask you about your original ETS? How wasit done (clips/cautery) and on which level? Were your ganglia destroyed? And which ganglia were reconnected by Telaranta? I will be happy for any information, thanks!

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    1. Thank you for your comments.

      My ETS and reversal experience is as below.

      [ETS surgery]
      Performed in October 2000 in Japan.
      Excision of T3/T4 at right side, and of T2/T3 at left side.

      After that, I had severe problem of compensatory sweating.

      [ETS Reversal surgery]
      Performed in January 2002 at Helsinki by Dr. Telaranta.
      (1 year after Original ETS surgety.)
      Used my sural nerve for nerve graft (now he seem to use intercostal nerve), and reconnected T2-T5 at right side, and T1-T4 at left side.

      This blog is so famous in Japan, and a lot of my friends took the same reversal surgery and comments their own experience on my blog.

      リバーサル手術後の経過報告用コメント広場 Page.5 (Comments page for progress report after reversal surgery)
      You may use google translation tool.

      Thanks.

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  2. Thank you!

    I went through the threads you recommended with google translator, it is a bit hard to read it but it was informative!

    I have a question, my T2-T4 were cut and removed. From your experience, is it possible to bypass even T1-T5? Also, is there a big chance of getting Horner's Syndrome?

    Thank you very much!

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    1. You are welcome.

      I'm not a doctor but only a patient. but I answer as much as possible.

      I know more than 30 Japanese people who took ets reversal surgery by Dr. Telaranta or Dr. Rantanen. Recently Dr. Rantanen often operates the surgery instead of Dr. Telaranta.

      Almost my friends were success. but very a few were unable to connect.

      You can read this article. (partially written in English)
      http://marumarutonton.blogspot.jp/2014/03/page4.html?showComment=1399730065109#c3585364255243389195

      My friend took ets reversal surgery in this May at Helsinki.
      His T2, T3, T4 at both sides had been all cut.
      In his reversal surgery, right side was reconnected from T1 to T4 using his intercostal nerve, but left side was only reconnected from "T2" to T4. (T1 was not treated.)
      It seems that the surgeon Dr. Telaranta decided not to reconnect rather than the risk of Horner's Syndrome.

      Some friends who treated of T2 temporarily appeared the same symptom of Horner's Syndrome.
      It is likely influence of swelling of nearby organization around T1.

      No one of my friends became Horner's Syndrome.

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  3. How long did it take for you and your friends to feel the ETS reversal was a success ?

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  4. I think it depends on a person.
    However, some people say that it took 10 years to feel they sweat similar to an ordinary person.

    Also, if it’s short between the ETS and the reversal, nerves seems to connect earlier.

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