Quote:
Originally Posted by chloecasey
Hi
I too have major symptoms that occur the minute I lay down at night, all started about 20 months post-op for Thoracic Outlet Syndrome (1st surgery complications resulted in 2 further surgeries, in the hospital for almost 1 month and lots of issues since (now at about 30 months) ....if I have done too much that day its awful.
My symptoms are like yours numbness in legs, arms and yes on the left side of my face even that swollen feeling.......along with these I also am light headed and nauseous and feel very fatigued and almost flu like?
Have recently gone to a neurologist, he has run blood work, had brain & cervical MRI will get results and have EMG done also.......Not sure I made the right choice in the Doctor but will here what he has to say, I may have to do like Ginnie said & find a Physiarist. He even mentioned a sleep study and I see no point as I do sleep well, I just wake up with the pain.
My question to others that might read this is....Has anyone had this occur after complications from a surgery, especially when there seems to have recurrence at a surgical site that then seems to have pain spread to other parts of their body? I feel so strongly about this but I have not had any straight answers from other doctors that I have seen since all this began!!
And then I find that most people think because I look OK that how can I possibly be ill???
Would appreciate any thoughts from others
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Yes, ChloeCasey, I have had this--or something pretty similar! In 2007 I had a thoracotomy for a benign neuroma (schwannoma). Afterward I developed mononeuropathy at the site of the incision. Finally got Rx from a pain doctor for Nortriptyline, which helped quite a bit--I stopped the Nortriptyline after about a year because the pain was tolerable. But then about six months ago I started getting PN symptoms--one foot, then leg, then other foot, then hands/arms, even face. Officially diagnosed as "idiopathic." The neurologist said there's no connection with the post-surgical nerve damage and nerve tumor (which was ALSO "idiopathic). But I can't help wondering, and my thoracic surgeon thinks there might be a connection. Now I'm getting relief (and pretty good sleep) from combination of Nortriptyline and Gabapentin, but I'm worried about the future. It's good (in a bad way, if you know what I mean) to learn that someone else has had this experience.