Evaluation of websites built by patients who underwent endoscopic thoracic sympathectomy

Introduction: Treatment of palmar hyperhidrosis with endoscopic thoracic sympathectomy (ETS) became popular in the last decade. Following an increasing number of individuals receiving the procedure, a large number of them had reported to be suffering from post-operation side effects. Due to the diminutive percentage of devastating side effects, medical literatures had paid little attention towards this issue. For better understanding of side effects after ETS, we evaluate the websites built by sufferers who underwent this procedure. Methods: We knew the URL of the support group of compensatory sweating (CS) sufferers in Taiwan from the report of a local newspaper in August 2004. And upon browsing their website, we got the link to the Swedish Sympathetic Association, and through which we came across the ETS and Reversals discussion forum (US), World Against Sympathectomy (US) and additional links to similar websites across Australia, England, Japan and Spain. The Taiwanese Web page was done in Chinese, and those from Sweden, the US., Australia and England was in English, in addition to the Spanish site in Spanish and the Japanese site in Japanese. The Japanese site and Spanish site were excluded from this study due to language obstacle. Totally eight websites located in seven countries were identified. Six websites were included in this study. Of the three physicians participated in the evaluation of the web pages, one was a neurosurgeon, one was a dermatologist, and one was an ophthalmologist. All three physicians had sufficient knowledge on the background of ETS. The neurosurgeon provided ETS operations in clinical practice, the dermatologist offered non-surgical treatment for hyperhidrosis, while the ophthalmologist never came in contact with any patient of hyperhidrosis. We had predefined key points for evaluation, including: 1. What are the goals of these websites? 2. What are the common side effects? 3. Two of these sites containing discussion forum, some patients reported their results after reversal procedures. What were their comments? Results: The goals of these websites include 1.Warn potential victims not to undertake ETS. 2. Get ETS banned. 3. Get the medical boards to adopt a defined standard of what exactly constitutes informed consent. 4. Get ETS syndrome recognized as an "official" disability. 5. Get compensation paid to ETS sufferers. 6. Punish fraudulent doctors. 7. Research into a working reversal procedure. 7. Understand the path physiology of hyperhidrosis and CS. 8. Find treatments for side effects. 9. Obtain emotional support. Since these sufferers were deeply troubled by the side effects, all websites polled consistently held a high expectation toward the reversal procedure. Certain serious side effects were highly consistent among different web pages. By far the commonest complaint of the sufferers is compensatory sweating. From several self-reports it seems that the severity and extent of compensatory sweating may change even several years after ETS. Many complaints were about no sweat on face and neck. ETS surgery can cause a total inability to sweat from the nipple line up. Extremely dry hands were also a common problem. There were three self-reports about the result of reversal by removal of clamp, two patients found some improvement after this procedure, the other didn't. There were two self-reports about the result of reversal by removal of clamp, these two patients did not find any improvement after this procedure. There were five self-report about the result of reversal by the nerve graft. None of them was effective. One of the self-reports was made 3 years after the sural nerve graft, and the only effect was the recurrence of palmar hyperhidrosis. This patient also complained that the reversal procedure made his side effects worse. There were four self-reports about the result of reversal by the nerve graft, no one found this procedure to be effective. Discussion: Evaluation of these websites was helpful for the understanding of side effects after ETS. This kind of information is important for all physicians providing this service and all people preparing to undergo this treatment.