[cppoly]

I have arm numbness when either arm is raised. The arm numbness is impacting my sleep because I cannot sleep on my sides because either arm will go numb for trying to sleep on my side. I also am forced to sleep on my stomach with my arms fully extended touching my knees because if either arm is brought up to my head that arm will go numb as well and this puts unnecessary pressure on my neck. I’ve been waking up 30 to 60 times every night for the past five to ten years. I also have unexplained neck discomfort at night time. When I wake up, I’m conscious of neck discomfort and I must change positions and reposition my head on my pillow, which is happening most of night. Things like shaving or brushing my teeth causes my arms to numb in less than ten seconds when they’re raised. I’ve seen many many specialists for thoracic outlet syndrome and none of them can find any compression in the thoracic outlet region through any testing or imaging. However, there is no doubt about it, I have the clinical symptoms of thoracic outlet syndrome.

Here’s the odd thing, I’ve never had an accident or an injury that would of caused this. I am good shape physically and workout once a week. I’ve had MRIs and MRA/MRVs of the chest and neck, sonograms of the neck, three EMGs, and a SSEP. All of them were negative. While all tests are negative, my physical exam shows clinical symptoms of thoracic outlet syndrome and vascular surgeons have offered surgery to remove my first rib on both sides to decompress the area and relieve my symptoms. Yet, an osteopath that I’m seeing suggested the compression might actually be in the brachial plexus region where the chest muscle meets the shoulder. He is able to reproduce my symptoms just simply by applying pressure to my chest muscle or my shoulder muscle. He did make a comment that my collar bone is set back abnormally 2-3 inches than a normal person's which causes the compression when my arms are raised, yet I'm not sure how to confirm this. Before I proceed with TOS surgery, I would like to explore the possibility of a less invasive surgery to decompress the brachial plexus region, as recommended by my osteopath. Does such a thing even exist?

Are there any recommendations for what type of doctor I might see for what I am describing? While I’ve been to many neurosurgeons, neurologists, vascular surgeons, cardiologists, chiropractors, and physical therapists no doctor has the experience of “brachial plexus compression” and they not only could not specifically treat what I was asking, they also could not make any recommendations of who I might be able to see. Also would like to know if is the neck discomfort that’s causing me to wake up 30 -60 times per night related to TOS?

Also to throw into the mix, I have a 30 point blood pressure drop in my left arm and a 20 point blood pressure drop in my right arm when either arm is raised above my head and I look the opposite direction. I would think this is no doubt a vascular issue. Just so odd that all my tests are negative.

Anyone have any suggestions??

[Jomar]

[an osteopath that I’m seeing suggested the compression might actually be in the brachial plexus region where the chest muscle meets the shoulder. He is able to reproduce my symptoms just simply by applying pressure to my chest muscle or my shoulder muscle. He did make a comment that my collar bone is set back abnormally 2-3 inches than a normal person's which causes the compression when my arms are raised, yet I'm not sure how to confirm this.]

1- could that be the Pec minor? there is a procedure for that if it is the issue or part of it.

2- seems like x ray or MRI measurements could show that difference.

We do have a drs & PT listing in our sticky thread above the main TOS thread list.

[cppoly]

Thanks Jo*Mar. What's the name of the procedure for the pec minor and what doctor do I see for that? What tests are there for this?

Would this still be a pec minor issue if symptoms are reproducible at the shoulder alone?

Unfortunately, PT has not worked for me. I've had several intense TOS tissue manipulation which included the chest area as well and no relief of symptoms. Also TOS stretches and exercises have not worked for 6 weeks.

[Sea Pines 50]

First of all, it's great that you're asking so many questions! Knowledge is power when it comes to the diagnosis and treatment of TOS. You will find that this can be a controversial area in medicine (a function both of the difficulty in accurately dxing TOS and rather poor surgical outcomes in the tx of many neuro cases [the stats are much improved for vascular - venous, arterial or both - surgical TOS cases]), and that very few choose to specialize in TOS.

There are also many "TOS deniers" who do not believe that neurovascular entrapment can occur at the level of the thoracic outlet. So be sure before you go in for any appointments that the physician you are seeing actually specializes in, or at least treats, TOS. You don't say what part of the country you are in, but hopefully you will have some luck with our sticky of TOS docs and PTs. TOS can imitate several other syndromes, so the most common way of getting accurately dxd is clinical. It is not uncommon at all for a whole gamut of different types of tests to come back "negative." This in and of itself does not mean you don't have TOS.

I have what used to be called "true neurogenic TOS" (as opposed to "disputed" neurogenic TOS), where there is severe and very noticeable atrophy of certain intrinsic muscles of my hand/s - and believe it or don't it still took almost 30 years for me to get the dx. Ultimately, I was dxed clinically by a top TOS vascular surgeon. Experienced pain management docs (particularly those with a background in neurology or physical medicine) can also be good at dxing this complex disorder. TOS is not an orthopedic problem. The best txment team you can put together would probably include a neurologist, a vascular surgeon and a PMP. A TOS-savvy PT (they're not easy to find sometimes…) and/or bodyworker can be your best friend.

As far as sleeping positions go, sleeping on your stomach is an absolute no-no (it will only exacerbate your neck pain [a very TOS - like sx, by the way]). If side sleeping is out, can you sleep on your back? Many of us use bolsters or extra pillows to prop ourselves up with at night for sleep. And there are many more, especially after TOS surgery, who find they must sleep in a recliner.

The "culprit muscles" in TOS are usually the pec minor, the subclavius and the anterior, middle and any relic scalene muscles you may have. Every TOS case is different, and every doc has their own regimen of clinical findings and tests to determine whether you have TOS and what type. You may need a 3-d CT scan to determine, for example, whether yours is a soft tissue or a "bony" case - which might determine what type of TOS surgery is indicated, if any (a rib resection, a scalenectomy, both, and/or a pec minor tenotomy). Years ago, a simple scalene block was a favored way to rule TOS in or out; these days your surgeon may use other measures.

TOS can be caused by accident (like whiplash), by injury or by congenital anatomical differences like cervical ribs or fibrous bands transversing the brachial plexus off a C-7 nerve root. My case had an insidious onset, just like yours. It happens.

Lastly, my doc sometimes has to take my blood pressure at the ankles due to the fact that there is so much neurovascular compression or injury that an accurate reading cannot be made from either arm. I think you and I might be kindred spirits!

Sorry to ramble; hope this helps a little bit. Good luck and I hope you find some answers soon.

PS. Tshadow did a thread on TOS testing you might want to find using the search function on this forum.

[cppoly]

Thank you Sea Pines 50 for the info. I think it's good to ask a lot of questions so I can fully understand what I have . Although now after I read your response I have more questions!

My major complaint is my sleep disturbances of 30 to 60 times per night which after so many years I can take my best guess and say it's from neck discomfort and neck aches. It's tough to describe but when I wake up I'm conscious of it and I know I have neck discomfort and I must reposition my head to a new position on my pillow. This is constantly happening throughout the night. Unfortunately my only position I can sleep in is on my stomach.

I had a feeling this is the worst position for TOS. My other alternative is to sleep on my back which initially works for about 3 to 4 hours. For some reason my neck feels like it becomes numb and has the same discomfort in this position as well. I can't maintain sleep like this have to roll over to my stomach eventually. The neck discomfort continues the rest of the night.

In regards to the issue of sleep, I've tried almost everything possible to solely treat it as a "sleep issue", not knowing about TOS. The only thing I can say is prescription sleep medications all made my sleep worse and didn't help at all.

I've been through about 20 pillows over the last 4 years. Cervical pillows don't work. Nothing really works.

My questions to you are, is there anything in the world that might be able to provide some type of relief from neck issues from TOS? How certain can I be that TOS surgery is going to fix my neck issues? Is it odd that I also get the neck discomfort and numbness while sleeping on my back?

[Jomar]

Did you find the sticky threads?

TOS drs & PTs listings - http://neurotalk.psychcentral.com/thread135.html
useful info ( TOS crash course in post #1) http://neurotalk.psychcentral.com/thread84.html

trigger point info - http://neurotalk.psychcentral.com/thread125577.html

pec minor tenotomy info links -
https://www.google.com/search?q=pec+...omy&gws_rd=ssl


You may have mentioned this already, I'm assuming your cervical spine has been cleared as not a factor in any pain?

[cppoly]

Yea my cervical spine has been ruled out. Only a minor bulging disc but it's not near my spinal cord. I just saw another neurosurgeon today. He is sending me for a brachial plexus MRI and a CT scan of the neck. He said he would only operate if something is shown through these tests. I discussed with him the possibility of impingement at the pec minor muscle. He said impingement doesn't happen here. Although my osteopath was able to reproduce my symptoms here! I understand why that he felt this way. Apparently this is a very rare condition to have an impingement here. Just do a google search for "pec minor tenotomy" or "pectoralis minor syndrome" and you will see very limited results.

After reading the limited amount of material on pec minor tenotomy, it appears like this is an ideal surgery. Quick recovery time and high success results for compression. TOS and pec minor syndrome seem to have overlapping symptoms. Right now I'm being offered surgery for TOS, yet I would rather go with the less invasive pen minor tenotomy surgery if I had a choice. Especially if this is the area if impingement.

Is my only option to travel to out of state to a see specialist who does pec minor tenotomy surgery? I live in New York and would probably have to travel far for this. Assuming this is exactly what I have...

I also checked the links Jo*mar. In the physicians list, how would I know who does pec minor tenotomy surgery near New York?

[Jomar]

Boston?? Dr Dean Donahue perhaps? - http://www.massgeneral.org/surgery/d....aspx?id=16342

Many TOS docs often let you send or email your files, but a call or message asking about the process would be the way to start I think.
Or ask if they can refer some one closer to you.

[kyoun1e]

I think being able to reproduce the symptoms at pec minor is quite telling.

I recently had an experience where a kinesiologist could manipulate my shoulder and either tighten or relax my pec minor muscle and either eliminate or reproduce my pain. It was a slam dunk that this was the problem with my left side.

The question is, why would this be a problem for you?

For example, do you do a lot of computer work? Or repetitive motion that has your shoulders forward or slouched? Work out with weights? Any of these and other "bad" movement patterns can result in your pec minor becoming adaptively short. When it does, there's not a lot of room for the nerves to travel.

If any of this resonates, I'd explore loosening up this pec minor muscle and working hard on movement patterns and posture that lessen the burden on these anterior muscles. I would NOT consider surgery until I exhaust this investigation.

And sadly, I've seen dozens of PTs myself over the years. And not a single one can connect the dots between tightness in the scalenes or pec minor, weakness in posterior muscles, overall poor posture, and a corrective regiment that attempts to fix the above.

KY

[Eight]

I highly recommend Dr. dean Donahue in Boston for his specialized CT scan and botox in the pec minor and anterior scalene. You are not that far away, it was more than worth it for me.

Sleep on your back, not your stomach. Your not really sleeping anyway....if you can figure luna safe way to do it, consider tying you arms down so you can lift them above your shoulders at night. Also you could consider elevating the entire head of your bed, doing wall push ups, deep tissue massage, and heating pads on scalenes.

Pentrix cream OTC, lidocaine patches, neurotin, skelaxin, Flexeril all helped me a lot as well.