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

My experience is that generally, docs are clueless when it comes to TOS. I'm in the Boston area, supposed hub of superior medicine, saw over 30 docs since symptoms began in 2009 (including shoulder specialists, physiatrists, neuros specializing in peripheral nerve entrapment) and not one considered TOS, some dismissed it when I brought it up. Some got downright nasty when they thought I was engaging in self diagnosis. Finally I made my way to Dr. Donahue who has offered surgery for NTOS. He told me one of his patients saw 50 docs. I understand TOS is often a diagnosis of exclusion, but the lack of knowledge about it in the medical community is baffling. I'm sure you'll get to the bottom of what's likely going on when you see Dr. D.

So I've been getting deep tissue massage of the scalenes. I walk out of there feeling loose. Symptoms have decreased over the last week to the point I really thought this was getting pounded into submission...

...until this morning.

Pain in the neck, forearm, and hand. When it's bad I can hardly straighten my neck out and stand up straight. It's almost like I have to hand my head low so the scalenes are slackened.

Anyways, do people feel like their symptoms increase in the morning due to overnight stiffness? And then decrease as the day goes on and you loosen?

Yes, my symptoms are always worse in the morning.

I've had it both ways. Sometimes worse in the morning and it gets better as the day goes on, but sometimes it's just the opposite. Good when I wake up, and it goes downhill from there.

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

Wow. That's interesting. And scary.

I actually wondered today if I should think about getting another cervical MRI.

I do have a little bit of issue in the c6/c7 region, but it's always dismissed as "unremarkable."

Coincidently, I'm going to a chiropractor Friday.

I'm really throwing everything and the kitchen sink at this one.

KY

What are the treatment options for positional cervical cord compression?

From what I read and watched on the video, mostly they have a therapist who created a pt method that is different to typical therapy, I think the name of the therapist on the site that I searched, is Sue Horton. The Dr. stated that surgical treatment would be recommended for ones where PT treatment was not successful or case was such that it was severe. I had bad experience with surgeries so I want to avoid that totally.

BTW, I also read that Dr. Holman has retired from his practice to devote time with research. I plan to show my PCP the info I found and contact the Dr. Or the therapist to get a hold of the DVD that she created.

One thing that I watched on the video, the doctor did say if a person seeks out a chiro that the patient should show the chiro the mri & report....especially if they have the flexion & extension views done.

Early on after I had my surgeries I did go to a chiro and did not find the treatment helpful, there was 1 adjustment that he would do that I even questioned whether it would cause a problem (based on my case with 3 surgeries, etc.). Hard to describe but it was where he would put his hands (palms) on the front of my shoulders ( would be on my back on the table) and press down? not a great explanation but you can maybe imagine that it did not feel too good.

Dr. Holman also stated that people with Fibro that was studied that most if not all had an adversion to putting there head back which seemed to point to the theory of doing the other views of MRI's and whether it showed the cord being compressed in those positions....sounds likely for pain that comes and goes too.

Editing my post again to also say that their is a 2nd video titled Treatment Pearls: Fibromyalgia that is another presentation that Dr. Holman did the following day at the same conference.......interesting info that again may have some ties to TOS neck pain, poor sleep, etc.