Looking for some insight
 

Hi guys,

I was just wondering if somebody could explain the connection that my TOS has with the pain between my shoulder blades and my scapular winging. Why is it that a problem originating up high in my neck/thoracic outlet would have downstream effects this severe? The pain in my upper back is by far my biggest complaint.

Also, is there anybody out there who has gotten surgery for TOS and found that there winging stopped? I've had physios tell me that my scapular winging came first and thats why I developed TOS, but that can't be right as all attempts to strengthen my back and shoulder blades do nothing to help the problem.

Thanks

That Nagging Pain Between the Shoulder Blades
[These people will complain of a nagging pain between their shoulder blades, usually on just one side of their back but sometimes on both sides. Trigger points in several muscles can cause this type of pain but the pain produced by the rhomboid trigger points tends to persist longer than the others.]
http://www.triggerpointtherapist.com...oulder-blades/


I had it, mine was from poor posture that fatigued the rhomboids.
Posture work, expert chiro, and being aware of any forward shoulder posture has resolved it in my case.
some self helps -
http://neurotalk.psychcentral.com/album.php?albumid=422
our trigger point sticky -
http://neurotalk.psychcentral.com/thread125577.html

Were your symptoms amplified by breathing deeply or by tilting your head/neck? I just wish I could understand the full anatomy of what was happening to me. If Rhomboid trigger points cause the pain in my upper back, and rhomboid trigger points are caused by poor posture, then why would I develop TOS at 17? why not when I was 15? My posture has been the exact same my entire life. Also, I work on my posture as much as possible and do all of my work at a standing desk, while also doing strengthening every other day for my back with a physio therapist. This is honestly the strangest condition ever, it's like it's resistant to change.

The winging complicates things, I didn't have that issue.
My theory..At some point our body just can't handle the abuse anymore so it starts to complain to us.
If we pay attention and really try to repair things, internally & externally as soon as possible, we might get lucky enough to resolve most symptoms..
I admit I read some of the stories early on and I did not want to end up is serious pain like some talked of.
So I really focussed on learning about the body and how to repair it, and spent a lot of my time doing self care at home many times a day.
Spent a lot of time finding many of the links in the sticky threads.
You can't learn it all at once , take time try a few things on some of the links there, find what works for you and what doesn't.

I also found really good PTs and the DC that was very helpful.
Some of it pure luck and some was just time & learning from all the PTs I did go to due to work comp , some were good and some were rookies still reading in the books.. do not stay with poor PT find a better place..

Have you been able to get any expert PT or DC , ones that address all aspects and uses various therapies to find the best things for you?

you might find helpful info in old posts by towelhorse -
http://neurotalk.psychcentral.com/se...g_searchinfo=1

a few others had winging too, a site search should bring those posts up.

As I understand, scapular winging may be caused by tight pecs major/minor and weak mid-lower traps and rhomboids which is common in TOS.
The weak upper back muscles are overworked and overstretched which causes pain.

The longer we have bad posture the more severe the problem gets. After a while the muscles can't cope with this anymore, develop spasms and trigger points and hurt all the time.

From my experience, it takes very little to send the sick muscle into spasm and very long for it to recover. The bad posture can't resolve overnight and may require many months of PT.

Upper back pain may or may not be a TOS symptom. Dorsal Scapular Nerve (innervating rhomboids) can be entrapped in the scalenes and Spinal Accessory Nerve (which innervates the traps) can get entrapped in SCM. But it may be that those muscles are not to blame.
TOS surgery may help in case of scalene entrapment, but probably not in other cases. E.g. if pain is from trigger points due to overstretching then the surgery won't help.

+ Hiker

In fact when I exercise my upper back, however mild, my pecs flare up and then i spend the day with nerve pain in my arms and hands. And muscle tension. Breathing helps but I have to do it for a long time and get marginal relief.

Related Possibility
 

I guess another thing that might be involved is any irritation to your long thoracic nerve, or LTN. You might want to ask your physical therapist or your TOS doc about whether that might be a contributing factor (although I think it might be more likely to happen as a result of TOS surgery...).

Just a thought.

I have two theories apart from the nerve one

Relative stiffness, some muscles are more powerful than others and hence the brain recruits them more and shuts down their antagonist or synergist. Which in turn recruits other antagonists which cause more issues.
For instance, pec minor in forward hunched over posture which acts against lower traps and overpowers serratus.
To counter that, lats are recruited, which hunches you even more and pec minor gets reestablished.
This theory holds that over time, either with stretching or constant vigilance, you can mitigate the effects.

Since exercising for TOS is often shoulders back and down (for lower traps), it ends up recruiting lats too which is a problem.

Second theory, is of some sort of internal trauma which is being masked by these muscles. I think that may be wrong, because sometimes the right muscles kick in and the pain goes down.

JZP can you detail your symptoms and when they flare up?

Winged Scapula can be from damage to the long thoracic nerve which is in the brachial plexus nerve bundle. Thoracic Outlet Syndrome occurs in the lower portion of the brachial plexus. You also need to find out if you indeed have winging scapula. A lot of physicians say you have winged scapula when you really may have Tipping scapula. They are 2 different things but most doctors just lump both of the terms together. If your scapula juts out at the bottom when you are standing with your arms at your side - that is anterior tipping of the scapula and not winging.

You should have a doctor do an EMG of the brachial plexus nerves to see what is going on. I have a tipping scapula and my EMG showed suprascapular neuropathy (upper brachial plexus - innervates supra/infraspinatus) and Dorsal Scapular neuropathy (upper brachial plexus - innervates rhomboid). Keep in mind the Thoracic outlet is located in the lower brachial plexus. Sometimes you can have both upper and lower brachial plexus damage. I was diagnosed with neurogenic Thoracic Outlet Syndrome, suprascapular neuropathy, and dorsal scapular neuropathy. Like you, my biggest complaint was the constant pain in between the shoulder blades/upper back. Constant spasm and irritation in that area. The more I messed with it with stretching, trigger point therapy, or massage the worse it got.

Okay yeah. The bottom portion of my scapula just out at rest, but when I get down to do push ups or any front loading exercises it looks a lot more like winging. I have had 2 EMGs on my ulnar and median nerves and they came back perfectly normal, which is upsetting in a way because it made my neurologist doubt my symptoms. For some reason he was not interested in looking at the conduction from any other nerves.

And similar to you, the more I mess with it the worse it gets.

Yeah sure.

So when I'm not flared up I am mostly okay. I don't lift heavy anymore but I still run track and workout my lower body hard, so to everyone else I am mostly fine. But flare ups are a different story altogether. I get the dull/diffuse difficult to locate pain in my shoulder and tricep that just kind of sits at a 2/10 on the pain scale, my hands throb with my pulse and I have this gross pulling feeling down my arm in between my bicep and tricep. My shoulders/shoulder blades crack and grind when I move my arms around laterally and I feel like I have dead arms if that makes sense. Like it feels like I just did a rock climbing workout and arms and shoulders are just dead. I also have a sharp pain between my shoulder blades that is exacerbated by taking deep breaths or turning my head, which is absolutely the worst. I usually just take aleve and hide in my room until it reduces.

Flare ups are super weird, like I have had this since I was 17 (21 now) and I still am not 100% sure what causes them. They just seem to happen. If I decide to say **** it and lift really heavy on my upper body or wrestle with one of my friends that will for sure cause a flare up, but I can also get them from sitting and studying/playing video games. I now have a standing desk which helps a lot. Another sure fire way to get one is to lay or sit on anything soft like a couch or bed. I know it probably sounds silly but I have to sleep on the floor flat on my back, sit with perfect posture, or stay standing.


I am rambling a bit, but yeah that's the gist of it.

This sounds really similar to what I have experienced. I was a heavy weight lifter - and now I have to take it very easy or it will surely flare up. I also have a stand up desk which helps a ton. Reading, using an ipad, or even checking my phone will cause irritation. I refuse to sit in couches as well, have to keep posture perfect as much as possible. If I sit in a couch it causes a flare every single time. MY thoracic spine/shoulder blade locks up. I also flare up for no particular reason at times. I try to stand as much as possible. I sleep on a very hard bed...soft bed and I wake up with that nasty spasming/burning feeling in neck, thoracic spine, upper arm and shoulder blades. I used a theracane for months and it really just made things worse. Countless massage therapists and Physical Therapists without really any relief.

If I were you, I would try to find a neurologist who is skilled at doing an EMG on the brachial plexus. They are hard to find...I went to 2 other physicians who said my nerves were fine just like you, the 3rd one said I had chronic suprascapular/dorsal scapular neuropathy which explains the symptoms. He is the only one who performed the EMG on the brachial plexus. I would bet the problem itself lies above the collarbone.

Also, I had surgery for thoracic outlet syndrome 3 years ago hoping that it would stop the pain in between the shoulder blades and correct the scapular winging/tipping. Unfortunately, the surgery did not help at all. The spasm and irritation is still there and the scapula is actually worse than before. My supraspinatus muscle was visibly atrophied after the surgery, meaning the doc probably irritated the suprascapular nerve even more while performing the surgery. I went to one of the best TOS surgeons in the country - Dr. Robert Thompson. If I could go back, I would have never had the surgery. Now I'm dealing with all sorts of new issues because of scar tissue surrounding the brachial plexus nerve roots...confirmed by MRI.

Im so sorry to hear that. It is very dissapointing because I always thought the surgery was my ticket to freedom (ha). Did you have scalenes removed? What was the procedure exactly. Again im so sorry. That is horrible. What else have you tried? I just don't understand why surgeons move forward with procedures that they aren't sure will work. Its pretty a shady considering how much it ends up hurting people? I dont know.

It's ok. I'm keeping faith that I will overcome it one day. I'm in medical device sales for my job so luckily I get to talk to doctors every day. I have tried pretty much every med you can think of...none of them really work (toradol injection, lidocaine, NSAIDs, valium, MS Contin, Klonopin, Cymbalta, Lyrica, Neurontin, among others). I don't take anything right now besides supplements (fish oil, ALA, Metanx, vitamin d). I would rather work on reversing the neuropathy than mask it. I just got bloodwork done recently and it revealed that my hormones plummeted. They are saying that they believe the chronic pain and stress on the body has resulted in depleted hormones like testosterone. I've researched this quite a bit and have found out that if you're low on hormones, the chance of controlling your pain is slim to none.


My physician has decided to try something that I am pretty excited about. I had to talk him into it - It is called Human Chorionic Gonadotropin. HCG produces testosterone, progesterone, estradiol, and thyroid. It is a neurosteroid that can help in pain reduction through neurogenesis and tissue healing. I'm actually starting it today, so we will see how it goes. This is something that could possibly reverse the nerve damage.

The problem with the TOS diagnosis is that 99% of people diagnosed is through symptoms. 1% of people diagnosed have true TOS - They either have cervical ribs or an elongated C7 transverse process. All of those provocative maneuvers they do are useless because the false positive rate is so high. I don't understand why they even do them. My pulse obliterated on all of them but the clinical correlation is nothing - too many people have the same thing happen without TOS so they should just stop using it period in my opinion. They also believed I had on odd case of TOS.

The surgery I had was a supraclavicular thoracic outlet decompression including anterior and middle scalenectomy, brachial plexus neurolysis, resection of the first rib, and pec minor tenotomy. The surgeon told me after the surgery that I absolutely needed the surgery...He said I have right brachial plexus compression between the scalenes, first rib, musculofascial bands and perineural scar tissue throughout the area. Brachial plexus compression also in the right subcoracoid space which is why they did the pec minor resection. My post op report states that I had an extensive amount of dense post inflammatory scar tissue surrounding the nerve roots.

The scalene injection helped a ton before the surgery...sometimes that is used to help with diagnosis. Multiple EMGs show that I have Suprascapular neuropathy and they can do a separate decompression surgery for that. The problem is that I have had a suprascapular nerve block injection done and it didn't help at all.

I posted some links in this on hormones/pain control, HCG, and the atypical type of TOS from dorsal scapular nerve compression. They wouldn't let me submit post with the links since I have fewer than 10 posts... so let me know if you want them I can pm you.

It's confusing to me why the scalene injection would cause symptom relief but the surgery wouldn't? It seems like that is usually a pretty good sign that the surgery will work.

Everything you have written is identical to my situation including the symptoms, surgery performed (except I did not have pec released), medicines tried, and nerve study result. I recently went to Johns Hopkins where they did MRN of brachial plexus and another nerve study. My suprascapular nerve is "chronic abnormal" although that was released seven years ago with no change. The MRN showed nothing but muscle atrophy and some scarring. I also had one of the supposed top surgeons (Pearl) and even had the 2nd surgery to remove scar tissue which did nothing. I only did this because the initial TOS surgery somehow gave me significant relief for a couple of months. Initial surgery was in 2012 and scar removal in 2014.

I am currently taking Opana ER (morphine) but I am thinking seriously about going through the withdrawal steps and doing without as it really does not help. About the only medicine I have not tried is one of the tricyclic antidepressants like Nortriptyline. They suppossedly have significant side effects but it may be worth a try from things I read.

The stuff you mentioned about hormone replacements sounds interesting. Please keep me posted. Feel free to PM me as well.

Hi I am interested can you pm me? thanks,julia

Yes, I sent you both a message.

-Sean

Hey Shug - pls add me as well.

My symptoms really flare up when i crane my neck, forwards or downwards. I suspect my kyphosis adds to it as does the fact i had a whiplash injury. The ligaments may be lax on one side, forcing the levator and pec to constantly spasm in keeping my shoulderblades stable. That in turn swicthes off the antagonist muscles and fatigues the traps.

Hi,
I had tried the nortriptyline and yes it was one of the more effective drugs that I have tried but comes with nasty side effects. It's a dependency designed drug, you feel great initially but then require more to maintain that feeling. Eventually when i grew tired of being so dependant on the this med and decided to discontinue, I had no idea how addicted I had become. I felt like I had the flu every time I would try to discontinue and in the end it took 3 months and multiple visits to the Doctor and Pharmacist to wean from it. Be very cautious and ask QUESTIONS before taking it. Good Luck finding something that works for you.

Sent from my Nexus 6P using Tapatalk

You can post the info links now, about the hormones/pain control, HCG, for future readers..

Here is the link on Dorsal Scapular nerve compression causing atypical TOS. It is from a doctor in China. I have never heard any TOS doctor in the United States even mention the dorsal scapular nerve being involved in TOS.

https://www.researchgate.net/publica...utlet_syndrome

Completely taking out the medial scalene to the nerve will relieve this issue. When doctors do the TOS surgery, they only partially take out the scalenes. They resect the middle/anterior scalene but don't take them all the way out.

Here are the hormone articles on HCG:

http://www.practicalpainmanagement.c...tment?page=0,2

http://www.painmed.org/2012posters/poster247.pd

http://painmuse.org/?p=2958



What is also interesting is that long term use of opioids will cause testosterone to reduce. If you have a family practice doctor - you can get a blood test done and they will tell you if your hormones are depleted. Most docs will just use testosterone. If you go to someone who is up to speed on hormone replacement, they will offer both HCG and Testosterone, testosterone, or HCG only. HCG will help with both muscle growth and nerve regeneration so IMO offers the best chance for pain control and possible reversal of neuropathy. It increases nitric oxide (helps bloodflow) and cAMP(tissue healing).

My testosterone was low so they decided to put me on testosterone replacement. I was on it for over 2 months and did not have any decrease in pain. I was just put on HCG every other day 2 weeks ago and this has been the only medication that has helped me (and I have been on a lot). It increases energy, lowers pain, and my sleep is way better.

Two of those links don't seem to be working so I will try them again...

Atypical TOS caused by dorsal scapular nerve compression:

https://www.researchgate.net/publica...utlet_syndrome

HCG for chronic pain study:

http://www.painmed.org/2012posters/poster247.pdf

Is this your primary care Dr that is giving you this treatment? I'm in pain management right now and I'd like to know if this is something that would help me.

Your story is similar to mine. I've been through 1 surgery and my post op summary said I had excessive scar tissue around my C8 and T1 nerve roots. I'm taking Lyrica, Robaxin, and Cymbalta right now for pain. This was prescribed after I was diagnosed with Brachial Neuritis, this episode kept me out of work for over 2 months.

I'm also taking an enzyme called Serrapeptase that supposedly works as an anti-inflammatory that can reduce scar tissue. I'm not sure if it's just snake oil right now or not.

My primary care doctor did the blood test that found my testosterone was low according to lab results. I'm only 31, so I believe my testosterone is depleted because of chronic pain (so did my doc). Long tern opioid use can also deplete testosterone. These hormones are vital for pain control. He put me on testosterone replacement for 2 months. I told him it wasn't helping and stated my case as to why HCG would be a better option to increase testosterone and possibly help with pain control. He was not familiar enough with HCG so he would not put me on it. I went to a new doctor that is up to speed on hormone replacement (another family practice doc) showed him my labs - he stopped the testosterone replacement and agreed with me that HCG would be a better option. He wrote an rx for 350iu every other day of HCG.

You will be hard pressed to find a pain management doctor that is going to write you a prescription for HCG. Hormone therapy is not there forte as it is too new/controversial. I would at least ask him about it, but don't get your hopes up. They usually don't know enough about it. You need to go to a internal med up to speed on hormone replacement, family practice doc up to speed on hormone replacement, urologist, or endocrinologist to get HCG. The only way one of these docs will write an rx for it is if your testosterone levels are low so you have to get a blood test done.

I took serrapeptase in a formula called vitalzyme for over 6 months. I didn't see any benefit in it so I discontinued. That doesn't mean it doesn't work, just did not for me. I also took pentoxifylline and vitamin E 1000 mg per day for over 6 months without any benefit. There were some studies that showed vitamin E/pentoxifylline can reduce internal scarring. I recently added vitamin E to what I am taking now because the nitric oxide from HCG ramps up bloodflow, combining vitamin E may work on the internal scarring. Here is my current regimine and why I am taking it.

-MetanX: prescription vitamin for nerve damage and to lower homocysteine levels (active vitamin B12, B6, methylfolate). I may just get over the counter version to lower homocysteine levels because its cheaper than RX and I have been on it for 5 months and haven't seen much benefit.
-Fish oil: 3 grams per day (anti inflammatory).
-HCG: 350iu injected subcutaneously every other day(nerve regeneration, pain reduction, increase in depleted hormones).
-Vitamin D: 5000iu per day(low vitamin d levels)
-TMG: 1000mg per day (lower homocysteine levels)
-Taurine: 3 grams per day (nerve health).
Vitamin E: 1000iu per day (internal scarring).

I used to take ALA and benfotiamine for nerve health but stopped due to not really seeing any changes.

I think it is vital to stay as active as possible without flaring up symptoms because of lack of oxygen flowing to muscle caused by adhesion/entrapment. I still believe there is a step by step process to overcome TOS:

1.control pain(meds)/stay active/increase bloodflow
2.remove adhesions/open up space for nerves to pass through (Tough to find a skilled manual therapist that knows complex cases of TOS).
3. Restore posture (Again, very tough to find skilled therapist's who work with complex TOS/nerve cases.
4. Strengthen muscles to restore any muscle imbalance that TOS causes.

Way too many therapists skip right to step 4 and further complicate matters.

I agree with you on all of that but the biggest problem is the adhesion part. Stretching/PT can sometimes just make things worse. That's why I was hoping the supplement route might help, like what you're doing.

I'm not much older than you (36) and I'm guessing mine would be low too. This neuritis episode sent my pain levels through the roof. I'll see if I can get some blood work done.

Thanks for the info...

I hear you, I've been to about 8 different physical therapists and 10 different massage therapists since my surgery 3 years ago. I have yet to come across 1 therapist in Michigan who has experience working on someone who has had surgery for Thoracic Outlet Syndrome. The search continues....

Didn't you say Thompson did your surgery? I actually have an eval with him next Wed to see if they have any ideas that would help. If I understood how the post op treatment worked correctly, after your surgery the physical therapists there work with you to come up with a program, right?

Can you tell me what your first eval with him was like? I know mine will be somewhat different since I've already been worked on though.

Doesn't the hospital have pts to help their own patients?

I would think since you have the pec, scalenes out of the picture, your 90% of the challenge would be to strengthen your scaps as the only "danger" muscles left are the lats...
And also activating your deep neck flexors.

Scar tissue I think is the new problem isn't it?

Thompson did my surgery. He was great prior to the surgery. He told me afterwards that I absolutely needed it because of all the scar tissue. Post-op was a different story. You go to the physical therapists for 1 session and they give you a few exercises to do when you go home....that's it. I live in Michigan so I wasn't going to travel to St. Louis for PT sessions. I had post-op imaging done at Mayo clinic 1 and a half years after the surgery and it showed scarring over the brachial plexus nerve roots, trunks, and cords. It showed suprascapular neuropathy. Also, they said I had chronic DVT in my right arm where the surgery was done, and possible arterial occlusive disease at the right radial level. None of my studies before the surgery said I had DVT in my arm so I believe it was caused by the surgery. When I brought this up with Dr. Thompsons office, they stopped answering my calls and emails. Verdella Brink is the secretary....she answered every single email I sent before the surgery. When I brought up the fact that I was still in pain and had a DVT in my arm 2 years post-op....no answer. They pretty much wrote me off.

I think what is really needed if you do have this surgery is someone (manual therapist) who is hands on that will break up some of the scar 4 or so weeks after surgery. Otherwise, you have no idea where the resected scalenes will reattach to. That's what they do, they scar and form onto surrounding tissue. My pec and scalenes are WAY tighter than they were prior to the surgery. My whole chest burns and has allodynia because of the surgery. I was fine right after the procedure, the nurses said I was the best patient they've had post op because I didn't complain about the pain. It was months later where all the issues came up. Thompson did not take the scalenes out all the way either, he resected medial and anterior scalene. He also only partially took out the rib, something I wasn't aware of until after the surgery.

That's really disappointing about Thompson. I'm hoping they could give me advice on conservative treatment and avoid any talk of another procedure.

Your story sounds just like mine minus the DVT. I started having issues about 3 1/2 years post op. If I understand correctly, my surgeon removed part of my anterior and didn't take out all of my middle, I still have my rib. My scalenes are hard as a rock now. What you said about them reattaching, that's what I would love to know. Are they stuck to the BP somewhere else now?

5 months ago I had a neuritis flare up that kept me out of work for 2 months (I've been back for about 2 months, 8 to 5 desk job). What I think is my anterior felt like it was on fire below my clavicle and next to my sternum. This lasted for about 4 to 5 days and was followed by months of pain that felt somewhat like soreness. Burning in my hand during that time too, all in the medial pattern. I'm still feeling some of this pain, my anxiety is through the roof thinking about it happening again.

And BTW, I live in Birmingham. We have one of the best medical systems around (UAB and the Dr. Andrews group) and I have yet to find a PT that has much knowledge of TOS.

Sorry I highjacked your thread jzp119...

I've never been diagnosed with brachial neuritis, they checked for that at mayo and said I didn't have it at the time but could possibly have had it in the past. I am familiar with that clavicle pain/sternum pain as well. My pec major/minor flare a lot on my surgical side as well. I believe the sternocleidomastoid muscle attaches to the sternum and can go off since it has to do so much extra work at times with so many other missing neck muscles (resected scalenes, omohyoid). The fear/anxiety of brachial plexopathy flares are the worst....the mind is constantly fixated on how to avoid it.....hard to think about anything else which probably perpetuates pain.