When you let yourself go through such a "secure"
surgery as the ETS (Endoscopic Thoracic Sympathicothomy) you do not
expect any negative complications or side effects. Especially since the
hospitals all the time claim that the only known side effects are Horners
Syndrom and mild compensatory sweating. Therefore the trauma and the doubt
is extremly intense when you either at once after the operation or
gradually during several months or years find that the body in many ways
has "ceased to function".
Several members in our association have, when the symptoms occured,
contacted the operating surgeon to ask if this is a consequence of the operation.
The answer has always been that they never have heard of these kind of side effects,
YOU must be an exceptional case! Through mouth-to-mouth and a couple of investigating
TV-shows in Sweden the crowd of us "lonely exceptional cases" has grown to about
130 patients. We claim that this is only the top of the iceberg!
Through a detailed inquiry among our members we are now trying to
map all our symptoms. We have in earlier investigations found these side effects.
- Severe compensatory
- Decreased physical capacity
- Reduced blood circulation
- Stomach problems (constipation or diarrhea)
- Oversensitivity to stress
- Oversensitivity to sounds
- Oversensitivity to light
- Muscle weakness ("lactic acid in
- Cold hands and feet
- Horners syndrom
- Reduced pulse reaction
- Shortness of breath
- Pain in arms and back
- Cronic fatigue, lack of energy
- Raynauds disease
Many of the symptoms are similar to those that come with
Cronic Fatigue Syndrom or Fibromyalgia.
Most of us have in some way been forced to change our
way of living. Physical exercise is almost impossible for us. Some have
found it impossible to continue with their profession and felt that they
had to find another job. Some have even lost the ability to work and have
gone in early retirement.
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