P.A.S.S

Patients Against Sympathectomy Surgery

TIMBO McCarty, an Australian/New Zealander who has been suffering from the side-effects of ETS for eight years and has been working on this website alongside me as well as helping organise meetings, had enough of the side-effects and committed suicide on October 29 at the age of 45. His Father and Mother asked me to put this on the website and to let everyone know that he had had enough. Timbo was always there for me as a friend to talk when I felt everything was getting to me. Timbo was also was a fighter. He wanted ETS surgery to be stopped and was depressed that the surgery is still being performed routinely. He was aghast that his surgeon, Dr Lin in Taiwan, who performed ESB (clamping of the T2 nerve), removed his clamps at a fee yet still performed reversals routinely even though so many people have come forward with complaints. Actually, he was like all of us, dismayed that surgeons are still not listening to us. This is the second suicide in two years from people who have had terrible side-effects. I will miss Timbo dearly. If you are around me now Timbo...I will miss your lovely emails, your friendship, your support in our fight, your sense of humour, your caring nature. We all will deeply miss you. I wish I had done something more when you phoned me in October telling me how depressed you were. I'm crushed at your passing but I'm going to work ever harder to see that this surgery is not done anymore. Love always from a true friend, Tracey Megan, and from all those who you helped in this life with your compassion.

God Bless to his wife and family who are in mourning with the passing of a truly good man.

A FINNISH REVIEW HAS SHOWN THAT THERE IS AN INDICATION OF SIDE EFFECTS AS A RESULT OF ENDOSCOPIC THORACIC SYMPATHECTOMY. HOWEVER, THERE HAS STILL NOT BEEN AN OBJECTIVE TRIAL DONE FOR THIS OPERATION. THIS IS SHAMEFUL. THE LINK TO GAIN ACCESS TO THE ENGLISH ABSTRACT OF THE REVIEW IS AT: FinOHTA

WHY HAS THIS WEB SITE BEEN SET UP?

This site was set up in September 2001 and is a collaboration of ETS (endoscopic thoracic sympathectomy) and ESB (endoscopic sympathetic block) patients in Australia who have had ETS surgery, and been unhappy with some of the side effects. This site also has links to ETS patients who are from Britain, Scandanavia, Europe, U.S, South America and Asia. Overall, there have been some benefits from the surgery for some of us. We no longer get the crippling shyness we used to get and we no longer sweat on our palms. However, there have been negative side effects - compensatory sweating (CS), extreme tiredness, vagueness, mental and physical delay. The latter have affected perception and attention span. These side effects were never mentioned when we chose to have ETS surgery. Since our surgery we have come into contact with many patients who also have these same side effects. We have been unhappy with the lack of negative information reported by surgeons. This website has been set up to give possible ETS patients information about the cons, not just the pros. We have also set it up to give people access to different resources - including information about ETS reversal surgery, which some have had to choose to get their energy back. At this point no objective trial had ever been done on ETS surgery in the world. P.A.S.S has contacted many different bodies including a surgical ethical review society (ASERNIP-s), medical boards, other support groups, hospitals and universities. However, even though there are many different papers/studies/reviews which indicate side-effects, we still strive for an objective trial. Our aim is to have the medical and scientific community do their job properly, rather than the patients, and investigate this surgery objectively. We also aim to support ETS patients in Australia, connect up ETS patients from around the world, as well as inform people about the side-effects of Endoscopic Thoracic Sympathectomy.

FACTS YOU SHOULD KNOW

ETS HAS BEEN BANNED IN SWEDEN SINCE 2003. ETS HAS BEEN BANNED ON PATIENTS UNDER THE AGE OF 20 IN TAIWAN SINCE 2004. NO OBJECTIVE TRIAL HAS BEEN PUBLISHED YET ON THE SIDE EFFECTS OF ETS/ESB. NO OBJECTIVE TRIAL HAS BEEN PERFORMED ON THE REVERSAL SURGERY FOR ETS/ESB SIDE EFFECTS [PLEASE SEE DOCUMENTS, JOURNALS & REPORTS LINK AT BOTTOM OF PAGE].

WHAT IS ETS SURGERY?

ETS is a minimally-invasive procedure whereby a nerve (T2) on the sympathetic chain in cauterised, thereby stopping the messages to sweat and flush.

WHAT ARE THE PROS?

ETS has the effect of diminishing anxiety. It is useful for a person who sweats and flushes alot on the face. It is also useful for people who sweat on the palms.

WHAT ARE THE CONS?

There are many side effects reported by a group of patients who count these side effects as worse than the original problem. The reports only focus on the benefits of the surgery and do not focus on the negative effects. These include:
  1. Severe compensatory sweating
  2. Decreased physical capacity
  3. Reduced blood circulation
  4. Oversensitivity to stress
  5. Oversensitivity to sounds
  6. Oversensitivity to light
  7. Cold hands and feet
  8. Loss of libido
  9. Weight gain
  10. Horners syndrome
  11. Reduced pulse reaction
  12. Shortness of breath
  13. Chronic fatigue, lack of energy
  14. Delayed reaction (slower when reacting physically)
  15. Mental delay (vaguer, and slower in response time)
  16. Depression

    17. All these side effects have been reported by many patients. Compensatory sweating or 'reflex sweating' is the most common side effect. There are three ETS surgeons, Dr Reisfeld, Dr Telaranta and Dr Lin, who have have adopted the clamping method (ESB-C) as well as lowering the level of the clamping ( T3 to T4), therefore cutting even more of the compensatory sweating apparently. However, this is still debateable as many patients have complained that they still have compensatory sweating and that the clamping method is not infact reversable.

    I have personally spoken to many patients who have reported these side effects. None of the literature or reports compiled by ETS surgeons mention these side effects, except for Horners Syndrome and compensatory sweating. These side effects can be devastating. One patient can no longer return to acting as her response time as decreased. Another patient feels he has "lost his wit". Others have suffered from depression because of the side effects. Others have so much compensatory sweating they have to change continually through out the day. Others are so tired and disabled by the sweating they have been unable to return to paid work.

    WHAT ARE THE METHODS USED FOR A SYMPATHECTOMY?

    There are two techniques available for Sympathectomy surgery for sweating and flushing - clamping and cauterizing. The first technique involves clamping the T2 nerve or more recently (2002) lower nerve sites to stop the flow. Some surgeons do not use this method as they don't have faith in it's ability to stop the sweating and flushing. Their reasons are because clamping cannot block extra-lateral pathways, such as the Kuntz nerve, which hide near the T2 nerve. Cauterizing involves destroying the nerve so it can never be regenerated. Cautery is achieved through passing an electric current through the tissue driven by a high voltage. The "arcing" produces local high temperature that effectively burn and destroy the tissue.

    HOW DO I CHOOSE IF I SHOULD GO AHEAD WITH THE PROCEDURE?

    These are the lessons i've learned:

    1. DON'T HAVE ETS OR EVEN ESB PERFORMED ON YOUR CENTRAL NERVOUS SYSTEM. Even clamping can destroy the nerve cells and cause scarring underneath the clamps and make a reversal impossible, unless undergoing a reversal with a nerve graft.
    2. Try beta-blockers, such as Propranolol, which are used for social phobia. These have almost the same effect as a sympathectomy. They reduce blood pressure, calm you down and reduce facial flushing. Or you could try Clonidine for facial flushing.
    3. Go to the 'Treatments' Section of this site or see your family G.P and try a NON-ADDICTIVE medication or clothing that will reduce sweating.
    4. Try Drysol or another medication found in the 'Treatments' section of this site for sweaty palms or reflex sweating.
    5. Try Yoga and/or meditation.
    6. Speak to other patients. Ask your surgeon to put you into contact with atleast five patients who have had the procedure.
    7. Contact the support groups if you have any questions. This is your life and body you are dealing with here.

      8. YOU ARE VISITOR NO:

      ETS TESTIMONIALS/ NO ETS FOR CHILDREN/ ETS DEATHS/ TIM MCCARTY'S LIFE/ HEALTH RESULTS - POST ETS/ REVERSAL TESTIMONIALS / DEAR DOCTOR / SCIENCE & NEWS / JOURNALS & ARTICLES / TREATMENTS / WHAT IS A REVERSAL? / CONTACTS/