Quote:
Originally Posted by kyoun1e
So six weeks ago I had left shoulder surgery. This may or may not have contributed to my current condition. Although I wouldn't be surprised if it did considering how immobile I was in the early stages.
Anyways, had a followup appt with my ortho. I had already discussed the previous episodes I'd had with my TOS symptoms. Last time I discussed this my ortho basically said, "let's not chase this with all kinds of tests, etc. Best guess is that this is a brachial plexopathy that will pass."
So, I bring this up again yesterday and the whole thing was just pooh poohed. "Let's see where you are in another six weeks."
I was like, "Six weeks? I can't sleep a lick now and you want to wait another six weeks? I could be dead in six weeks."
So frustrating.
Unfortunately, I've seen this movie before. The only two Drs. who get this are Dr. Donahue at Mass General and Dr. Kasparian at Lahey Clinic.
KY
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kyoun1e
I experience alot of issues similar to what you have described especially in the morning, which can be severe dependent on the previous days activities.
I have had surgeries, complications, seen numerous doctors, etc.
My PCP explained to me that in my case the nerves were overstimulated and I now have chronic pain, but even after starting on meds for the nerve pain can still be bad. He said that it is likely Fibromyalgia because now the nerve pain is body wide and just got over the flu over the holidays and I can say that the nerve pain was intense.
I read some of your past posts & the one in particular about your cervical MRI being clean is why I thought I would post this because in doing research for Fibromyalgia I came across a Doctor who treats people with Fibro & has a interesting theory on those who have Fibro actually have what he refers to as "positional cervical cord compression" or PC3 & his name is Dr. Andrew Holman.
It makes me wonder if those of us who have the neck pain this is the contributing factor to our TOS symptoms also. He states that those who get "neutral position MRI" will usually show nothing extrodinary but if the MRI is done flexion & extension views the measurements can identify compression on the cord that be related to "intermittent nerve compression". If you google PC3 & Dr. Holman he has info on his site and I also found on youtube a video that is about 45 min. long but is informative.
I know like one of the other posters stated that doctors don't like patients to "self diagnose" however, what does a person do when no one has an answer.
chloecasey