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Originally Posted by romans8
One of my doctors (not TOS surgeon) thinks I may have "hyperactive sympathetic nerves" from all of this. He said it is very difficult to treat. He has suggested a spinal cord stimulator but I have not seen where those have helped too many people. Has anyone else been told that about sympathetic nerves or have any insight into it?
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romans8
My doctor (not the surgeon) explained to me that my symptoms are a result of the trauma from the surgeries (3 in one month for TOS and 2 chyle lymph leaks) which caused several post op issues and definitely scar tissue at the surgical site. The complications of nerve damage to the phrenic nerve has caused breathing issues, the damage to the nerve that resulted in Horner's syndrome in the left eye (surgical side) is still evident and will not improve. The fatigue, nausea & light headedness is ongoing after almost 3 years and the nerve pain has become body wide and is worse at sleep which is when my symptoms seem to escalate.......My doc explained that the pain receptors in the brain became "over sensitized" due to the "over stimulation" of the nerves and the brain created a "memory" to this increased pain.
I asked if this could be possibly Fibromyalgia and he said that it was....In researching this through Mayo Clinics site, it does sound like it could be.
Hoping the Meds and the recommendation of Massage Therapy will improve and manage the pain.
Not sure all of your symptoms however you might want to research the fibromyalgia sites.
chloecasey
P.S. came across website....
www.fmpartnership.org that has current info that might be of help for you and others