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New TOS diagnosis - need help with identifying symptoms

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Unread 02-08-2014, 05:10 PM   #1
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Default New TOS diagnosis - need help with identifying symptoms

Question #1: Can TOS cause cramping/tensing of the shoulder & neck muscles?

Question #2: I am told pain from TOS usually presents on only 1 side of the body. Is it possible for the neck & head pain from TOS to be present on both sides equally?



Just found these forums as I am researching TOS. Someone very important to me has been having horrible pain from a car accident 10 years ago. She has been diagnosed with occipital neuralgia and third occipital neuralgia, with severe pain in the neck, as well as headaches that move around to various places on her head. She also has a constant tightening of the muscles in the trapezius area that they have been unable to relax.

She has had several rhizotomy surgeries, and they have provided some good relief in the lower areas of her neck; however, she continues to have severe pain in her upper neck (C2 area) that the doctors cannot explain, as it was believed the rhizotomy would deaden that pain.

This last week, she was able to obtain an appointment at the Mayo Clinic in Minnesota (where we live) and her new internist identified that she also has TOS (more prominent on her left side - likely due to her seat-belt in the accident). In researching TOS, we are suspecting this could be an indirect causation of the pain she still suffers from. She met with a vascular surgeon and a neurologist to discuss the possible benefits of surgery, both of which seemed to quickly dismiss the TOS as being related to her neck pain and headaches. In short, they did not want to consider surgery as they did not believe it would provide her any relief from her pain.

While her pain may not be typical of the brachial nerve compression associated with TOS, we are thinking it is possible that her TOS is causing the severe muscle cramping in her trapezius area. If that is the case, we suspect this cramping could be aggravating the third occipital nerve present in this region. If that is happening, the compression and aggravation of the third occipital nerve could account for the pain she suffers.

While the surgery sounds horrible, she wants to at least find a doctor that is knowledgable and that will take the time to consider a correlation. Our hopes are that if treatment and/or surgery to correct the TOS allows her muscles to finally relax, it will eliminate the compression of the third occipital nerve and possibly give some pain relief.

I am hoping some of you can share your personal experiences and help us determine if we may be on the right track here. What frustrates me most is that they identified clear TOS on her left side, but other than suggesting PT exercises or drugs they seem unwilling to do anything else (they did not even suggest a scalene block).

Thank you in advance for any info you can share!!!

I should also note, she had already done months of the same PT exercises they suggested without any benefit - in fact the PT was discontinued as it only produced painful flare-ups of her neck issues.
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Unread 02-08-2014, 05:36 PM   #2
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It is difficult to find MDs up to date on TOS, same for very good PTs.

I hope they didn't just do the standard PT protocol as that rarely works for TOS or TOS like injuries.. many do get worse with that "cookie cutter" PT style.

You need a very good well trained PT and possible even a expert chiropractor, since it was an accident that brought on these issues.

After 10 yrs there may be some serious internal scarring that will need to be addressed, I would suggest expert manual therapy first, before surgical interventions.

#1 - yes - the nerves can cause the muscles to act or feel - and like the chicken & the egg - the muscles can cramp or get trigger points that clamp down on nerves & blood flow..

#2 it can be one or both sides, just depends. one side can be worse, and one side less bother some..

check out our sticky threads above the main TOS thread list for tons of crash course info.

Try to seek out who the best PTs & chiros in your area, and get a full evaluation from them.. many MDs don't even do any hands on in depth testing...
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Unread 02-08-2014, 05:39 PM   #3
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I also have bad headaches and migraines, as well as continuous neck pain. I have bilateral TOS, worse on the left side. I had TOS surgery on my left side nine years ago. It simply made things worse and resulted in mingraines, which I did not have prior to surgery. My surgeon and neurologist thought surgery would relieve the headaches. So, I suppose there is not uniformity of opinion on that matter.

Good luck to your friend.

Take care,
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Unread 02-08-2014, 05:42 PM   #4
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Thank you for the reply. I am actually reading all the links now.

I was also reading other posts, and it seems as though member NOSPAM had a similar issue, with neck tension causing compression leading to occipital neuralgia and TMJ pain. (She also has TMJ issues...never knew they could be related to TOS). I may try to contact him...
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muscle cramps, occipital neuralgia

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