I'm wondering if anyone has had success in diagnosing compression sites with a Neurography of the brachial plexus? I was told that it is ineffective because without compression the nerves have a normal appearance.

I have not been given an official diagnosis of TOS although I have been exhibiting all of the symptoms for more than a year. The thing that is keeping my docs hesitant to label me with the TOS diagnosis is because I did not have significant improvement of my symptoms with the botox injection to my anterior scalene and pec minor. Just wondering if it might help in the diagnosis and with treatment.

I had one at Johns Hopkins. They didn't find anything in the MRI. Most all of my tests were negative expect for my EMG and nerve conduction. I just had a first rib resection 2 weeks ago. Still too early to tell how well it worked though. It's worth being thorough and getting all of the tests done you can. I spent 2 years going through everything before deciding on surgery.

I hope your surgery is very sucessful! My Dr is pretty certain that the MRN won't show anything but I can't help but try everything. Did they try botox injections on you before the surgery? If so did they relieve your symptoms? The vascular surgeon I saw is recommending surgery if all else fails.

Hi Hope -
I read your introduction (in your 1st post) and gosh...your symptoms and history really sound like TOS to me. Are you seeing a doctor who is highly specialized in TOS? I would think that an experienced TOS specialist would diagnosis you on the spot based on your symptoms and history alone.

Otherwise, I wanted to mention, that my doctor told me that if the scalenes are highly scarred, they become almost tendon-like, and the Botox will not provide the chemodenervation and relaxation effect that would otherwise occur in normal muscle. Therefore, Botox will not work in these cases, even though the scalenes are the problem. Given that you've had 5 MVAs, with 4 of them being potential whiplash incidents... perhaps this is why the Botox is not working for you.

Also, I've had an MRI/MRN of the brachial plexus. I have one-sided symptoms and we were "hoping" to find that the anterior scalene muscle had hypertrophied/enlarged on the symptomatic side, compared to the non-symptomatic side. This did not show up on the MRI. Instead, we found that the brachial plexus is exiting the scalene triangle high up (in the narrower part), with the upper trunk particularly high. It's an interesting finding since I tend to show more upper trunk symptoms. However, while such anatomy is thought to be a predisposing factor -- it is far from definitively diagnostic.

IMHO... I think you should go forward w/ the MRI/MRN and also seek a second opinion from another TOS specialist, even if you have to travel to get to one.

Hope this is helpful, and best of luck to you.

HI
My BP mri showed neural edema which is irritation of the nerves. This was helpful in that was just one of the things pointing to a TOS diagnosis for me. The other was a scalene block (successful) but highly subjective and I wasn't in tremendous pain that day) and a physical exam by 3 different doctors who independently gave me a TOS diagnosis .Unfortunately botox didnt help me either. I am not pursuing surgery at the moment although had 3 consultations.I have had a little bit of success with PT, Trigger point injections and Lyrica. Occaisional Tramadol or a muscle relaxant. Still not enough for me to go back to work or be normal.
JKL

Hi there, hope your recovery goes well!
Just wondering what nerves showed abnormal on your emg tests? How long did u have your sx bf surgery?

Thanks

Thanks cyclist. What you said about the botox not working due to scarring makes perfect sense to me. I did see a TOS specialist who originally diagnosed me with it but after the botox injections failed to help he said he can't definitively say that I have TOS. Another symptom I have that doesn't seem to be as common with TOS is mid to upper back pain. I'm not sure what that's all about.

I'm pretty desperate right now and willing to try anything. I'm going to try rolfing next to see if that will bring any relief. I'm curious to know what type of treatment has worked best for you?

I appreciate all of your input and I am going to have the MRN in a few weeks. I'm curious to see what, if anything, it will show.

Take care

Sorry to hear that JKL. I totally understand your frustration. I know the feeling of wanting and hoping so badly for something to take the symptoms of this awful syndrome away. I'm curious to know what they are using for your trigger point injections? Do they think that your TOS is due to your scalenes? Which muscles did they do the botox in?
Have you tried chiropractic before? I have been doing it for a few months. It hasn't helped with my nerve issues but it has given me significant relief with my mid-upper back pain.

Hope you find some relief soon

Hey Hope - I think upper back pain, particularly around the scapula / shoulder blades, is pretty common. Otherwise, I'll send you a PM (personal message) to answer your question.

...and it was so useful in validating what I had been saying all along...it hurt here, there and there. 8 years of people telling me it was all in my head and all of a sudden I had proof in black & white. I wanted to take those images and show them to everyone!

Good luck with your surgery!