TOS or ?? - REALLY confused ...
 

I have been struggling for a concrete diagnosis of having TOS or not. To date I have had primarily bilateral nerve symptoms including numbness and neuropathy. I don't have any loss of strength or pain of significance which seems to be a hallmark symptom common with the syndrome. Occasional burning in the forearms but that is very infrequent.

I have seen specialist after specialist with one or two suspecting TOS but others suggesting I don't have it. The diagnostic tests are usually negative and I can do the Roos test with no real symptoms of any kind. Adsons and other tests showed little change in pulse.

I have had a c-spine MRI which was normal and NCV and EMG which were relatively benign and revealed nothing. Lately my neuropathy is spreading where even small movements of my arm are causing electric sensations throughout - not overhead or outstretched. I am going to go back to a neurologist for more testing as this seems atypical.

Very scared and tearful, panicked beyond words.

I think one of the problems is they don't want to dx a case that does not show as moderate to high pain, or has the come and go symptoms..

Much safer and less trouble for drs to only dx the fairly obvious cases with continuous symptoms & moderately high pain levels.

sometimes getting an actual dx might not be a good thing.

I am just worried it's something else and the crawling and electric like sensations in both arms seem unlike tos. They seem more like a disc issue? But my MRI was normal ...

Have you also had full blood work up?
Thyroid imbalances can sometimes play a part in symptoms.

Have you seen the TOS testing thread ?
It gives a good overview of many of the tests that can be used if needed.
http://neurotalk.psychcentral.com/post580952-11.html

I had quite a bit of buzzing and weird feelings inside my forearm muscles for a few months.


Are symptoms only in your arms , or do you have some neck tightness/stiffness along with the arm sensations?
Any fine/detail finger coordination losses?

Nerve compression can occur anywhere along the path of the muscle where the brachial plexus is covered by muscle. In addition, the myelin sheath may become "sticky" due to irritation. This website explains it better than I can:
http://intraspec.ca/PIIS0749071203000908.pdf

Surgery or injections of any kind should always be considered an act of desperation. First try trigger point therapy of the scalenes (3 on each side) and both pectoralis minor. There's a lot of stuff in the axilla (the brachial plexus, lymph nodes, blood vessels), so any work in this area must be careful. But the corachobrachialis can entrap the nerves deep in the armpit.
But do try the nerve gliding stretches which can release adhesions within the nerve sheath which will make movement of the nerve easier.

Have seen the testing thread and googled every possible article on TOS. In some ways I know more about it than a lot of the doctors I visit. :-( they did the blood panel first when all of this first started.

Haven't lost any strength or precision in fine movements yet. Hoping that is not in the cards. Worried about permanent nerve damage but unsure what to really pursue next. So exhausted. I have seen numerous doctors. 3 neurologists. PT for 20 sessions. Ortho. Chiro. Just beyond scared and frustrated.

I'm only 33 and am realizing that my life is likely forever altered or diminished because of this. Newly married and I am having a difficult time wrapping my brain around the fact I am headed for a lifetime of pain or multiple surgeries for recurrent symptoms. Not sure how I will work or maintain any sort of independence.

Seems the realistic outcome of surgery is less than 30% - don't really like those odds. I'm so desperate for any sort of help.

I know how you feel.... keep strong and try to relax, if possible???
 

Hi 343v343,
I'm a newbie to NeuroTalk and have not yet had any replies/info from my posts... I'm not quite sure if I'm posting correctly????
OMG I truely feel 4 u!!!!!
I've been there. All I can say is that you know if you're not feeling right so persist in getting yourself checked out.
Its so frustrating and worrying when doctors don't know what is going on with you!
It took over 5 years to get to the bottom of my issues! My symptoms were so varied.... ranging from carpal tunnel, elbow pain, circulation probs in cold weather ( Raynauds syndrome), heavy fatigued arms, neurological issues in my hands ( this lasted for over a year but it then subsided on its own accord ), neck pain, shoulders and back probs etc etc, all the above coming and going long term. At times I would be absolutely fine but when it returned would knock me completely! 3 weeks ago I underwent surgery for a first rib excision, which I'm still recovering from and I am still due to have the same procedure on my left side too.
I was eventually diagnosed as having bilateral Vascular/arterial TOS by my surgeon ( who is great) after I was referred by a PT ( thank goodness ) who picked up on the fact that I may of had a vascular problem. She performed various tests such as Adson's and Roo's which resulted in me losing my radial pulse and both my hands turning white!!!!
I know that I have along way to go yet but I'm hoping that now I will be on the road to recovery/normality. Surgery was painful but I'm so glad that I've been worked on. I have hope.:)
Keep trying with your doctors, you owe it to yourself, and don't feel guilty for getting a second opinion. I let my local doctors intimidate me ( and in turn prolong my diagnoses) into thinking that I was being neurotic BUT inside I knew something was wrong!
Best of luck :winky:
From SD38

Glad you're on the road to recovery. That is good to hear. Did you notice an immediate relief in your symptoms? I have heard many say as much. What sort of odds are they giving you for a prognosis ? It's hard when the literature suggests only about a 40% success rate, long term. My fear is going through all of that only to wind up back at square one or worse.

I too have bilateral symptoms so it would be I'm guessing a double case of surgery though I know they can't do them at the same time. What are you able to do or not do while in recovery? Did you do any scalene blocks to confirm a diagnosis? I am guessing if there were circulatory issues involved then the case for surgery was probably more clear cut.

Will you return to work? Or?

Lately I am finding it hard to do little things like drive. The vibrations in the steering wheel seem to excite my nerves and it feels like a painful tickle. Frustrating and scary because I don't recall seeing that listed by anyone else. Seems people report more outright pain.

Oh the vibrations from driving esp on rough roads were very annoying for me, I didn't have high pain, just many bothersome oddball sx.. my pain levels mostly ranged 1-4 then up to 6 at the worst time (severe spasms).

343:

Your story is all to familiar. Believe I've been in front of close to 50 Doctors and tested for everything. Sounds like you are going down the same path. Not to frighten you, but MS, autoimmune diseases and Lyme should be ruled out as well.

In retrospect, I don't think a dx is that important, once you've ruled out anything medically major going on. Chances are everything will be negative.

Treat the symptoms regardless of what "label" is placed on you. Sometimes it's better not to be pigeon holed into TOS. Doctors and Surgeons will look at you and only see your thoracic outlet. As many people will attest, there is symptomatology which occurs in legs and hips, and throughout the body with this syndrome. We are not made up of parts and pieces, but all connected. Relax and don't worry about things you have no control of today. Your case could easily be resolved with trigger point therapy and you would have worried for nothing.

Vibrations, music, loud talking, feet walking on a floor, the hum of an airplane or car all resonated in my nervous system.

Actually I should have mentioned too, they did a Brain MRI which was ruled normal as well. Feared MS as well. I guess how do people treat neuropathy symptoms of a crawling nature? I do stretches and nerve glides with little to no help.

Thanks for replying..... Your my 1st!
 

Hi 343v343
At the moment I think it is too soon to say whether I have any improvements. I'm day 20 post op. Lots of niggles and aches, breathing is not great and sleeping is rotten..... Hey ho, all in the name of recovery I guess... or at least I hope!!! However I'm pleased to say that lots of the inflammation from the op has settled but quite some time to go yet.
I'm being signed off work by my GP every 2 weeks so far to see how I go. I have absolutely no idea what time scale I will be off work. I keep thinking that I'm okay to start gentle activities but soon feel the effects of the surgery..... achy, achy and more aches! I'm trying to keep a brave face in front of everyone but its beginning to dawn on me that recovery and return to work is going to be alot later rather than sooner.:( Unfortunately I'm starting to get abit frustrated that I can't get on with tasks yet or write (my first op - and due another on opposite side- was performed on the side I write with and I'm a classroom teaching assistant..... it doesn't look good for me ).
I still feel abit headachy after walking so I'm focusing on my breathing to try and improve my oxygen intake and help with the healing process and gently expanding my chest. I have realised that I breath very shallow, and when deep breathing feel very uncomfortable in my arms and back of shoulderblades????
I'm due to see my vascular surgeon in 4 weeks so will hopefully be fully informed to how everything went, what exactly was taken out, etc etc and what will happen regarding my left side. I must admit that its very unnerving to know that I have to go through all this again:eek:.... I just so hope it makes a difference for me. At least for the moment I can be grateful even though sore that my artery is not being squashed, with the first rib out there should be plenty of space for everything to settle.
Has anyone used Bio oil, I hear its good for scars? Mine are pretty big ( about 2and 1/2" wide above and below the collarbone:( so I would like all the advice possible to help heal and improve the look ( if possible ) to their appearance.
I hope all goes well for you.... This is not a nice journey we are on!
RE: work.... now thats a topic for discussion. Over the years I have reduced my daily hours significantly, and dropped a job ( playgroung duty in the school that I work) that involved ringing a bell and standing outside in all weathers ( aggrevating my Raynauds prob ). I now work 3 hours/day in the classroom..... Well hopefully, that is if they keep me on!?
Best wishes and take care. SD38

Disc issues are rarer than you might think. Disc issues shout that something is wrong; to date your symptoms are a whisper, correct? The vertebral column is very well designed. It permits trunk extension, flexion, rotation. The vast majority of nerve problems occur outside the protection of the vertebral column. By necessity nerves must intermingle with muscles and their fascial coverings.

Your symptoms so far are light, and may never get worse. The mild compression of the brachial plexus you are suffering from is most likely caused by trigger points in scalenes, pec minor--anywhere along the path from C5/ T1 to the tips of your fingers. Before even considering other more drastic treatments you might visit a massage therapist trained in NMT and MFR. Excessive stretching may exacerbate irritation of the nerve sheaths.

TOS may not be the cause; it could be irritation in the carpal tunnel.

I think we've all at one time or another experienced mild nerve compression; whatever the cause, the body usually heals itself if not interfered with too much. Keep in mind that if we push our doctors, for your peace of mind they might prescribe against their own best judgment. IOW, trust your doctor till he gives you reason not to.

I have almost the same symptoms as you, i also have bilateral nerve symptoms-tingling, burning, electrical shock like pain and muscle twitching.

I do not have any loss of strength, and no range of motion problems either.
Tests:
Blood tests: Negative
MRI C-spine= Negative
Tinell's test= Negative
X-ray elbow= Negative
Adson = Positive
First Nerve conduction test= Negative (Done by unexperienced doctor)
Second Nerve conduction test = Positive, brachial plexus compression bilat.
(Done by a guy with 50 years of experience doing these tests)

just wanted to tell you, that you are not alone: I have the same symptoms.

"Very scared and tearful, panicked beyond words" Describes my state of mind aswell.

:grouphug:

Hang in there.

So what's the conservative (non-surgical) solution to brachial plexus compression?

i recommend working on gravity, like that :

http://www.globalbackcare.com/articl...t-on-chair.jpg
http://www.surftilyoudrop.com/images/inversiontable.gif

Where did they stick the "needle" to determine the BP compression in the second test. I am going back to the Neuro to ask for a second test and if I am going to go through that discomfort again, I want to be way more thorough about where we're testing on my body.

How are your symptoms progressing or improving?
When you do the Adson's test do you get reduced or absent pulse? Have you found anything that helps?

You can't bet gravity
 

Hi boytos
thanks for your suggestions, simple BUT effective!:cool:
I will give them a go ( GENTLY )....... post op 3 weeks: (first rib resection/excision and very tight around incision area and SCM).
From SD38:)

The guy didn't use needles, he used those sticky pads. He started testing me for Carpal tunnel and radial tunnel but all those where negative - then he placed the electrodes on my chest near the BP - and he concluded that that is where the compression is - bilateral.

If you like, i can probably upload the charts from the test. :hug:
As far as i can tell, a positive nerve conduction test is very rare in this condition.

Symptoms are atm progressing i think, its hard to say - but its not improving, i just need to find the right amount of stretches and excercises.

Regarding the Adson test, my pulse went completely away. Tiger Balm and positive thinking helps at the moment :)

@Chroma: I need another appointment with my rheuma, awaiting a MRI scan of my BP - then i'll probably get the verdict, whether its surgery or PT.

Maybe start out with yoga style "corpse pose" on floor or bed first, then move up to a rolled towel to see how you do with it, then move up to foam roll or large ball.
Don't want you moving ahead to soon- maybe run it by your Dr or PT person to get an OK.

images of various corpse poses -
http://www.google.com/search?tbm=isc...655l2.7.2l11l0

Trigger point therapy by a licensed massage therapist who is skilled in neuromuscular therapy (trigger point therapy). Read the "sticky note" explanation of trigger points on the main page.

The brachial plexus (BP) is often compressed by the scalenes in the lateral neck (three on each side, and each can have 2-3 active trigger points). Farther down the line, the BP can be compressed by the pectoralis minor, which attaches to the coracoid process of the scapula (located beneath the clavicle). Next trouble spot for the BP is deep in the armpit, where it passes beneath the coracobrachialis, which also attaches to the coracoid process of scapula. In the posterior elbow region nerves are close to the surface and easily damaged there, but for the same reason unlikely to be compressed down here. But further down, as the nerves and blood vessels move into the hand, the retinaculum of the hand can compress the heck out of one or more tendons, blood vessels and the median nerve-- the infamous carpal tunnel. Carpal tunnel syndrome is often confused with TOS compression of the entire brachial plexus. As a rule, if the pain/tingling is felt in the thumb and first two fingers, it's probably cPS; felt in the others, it's probably TOS compression higher up.

MT for TrPs is slightly painful. If you visited the sticky notes I directed you to, you know that a TrP can cause the entire muscle to become hypertense, which limits circulation through it, which causes ischemia which causes sensory nerves to light up. But by definition an active TrP can send its pain to another muscle-- i.e., a scalene TrP can send pain into the fingertips or-- oddly!-- into the infraspinatus or other muscle that either attaches or is very close to the scapula. TrP work is slightly painful, but releasing the several TrPs in the muscles that can compress the BP will take just a few minutes, and the pain relief will be evident before you leave the MT's office.

PT can be effective treatment for TOS. But in my personal opinion, MT is quicker, more likely to bring relief, and it is certainly less costly. Medical doctors' standard treatment of trigger points is an injection that calms the trp temporarily along with a cortisone shot into the affected joint. The opinion of at least one clinical study is that cortisone has an adverse affect on tendons, ligaments and muscle tissue itself. (google "cortisone--is it really good").

Do read the sticky note: it is first rate explanation of trigger points.

According to the test the compression is at chest? That's a trigger point in the pec minor-- easy to fix. Pec minor originates on ribs 3, 4 and 5 and inserts on the coracoid process of the scapula. The active TrP will likely be high on the pec minor, between the 3rd rib and the coracoid, but you should also release the lower TrP, right about the fourth rib--but they can arise anywhere in the belly of the muscle.

If you haven't submitted to the surgery, you, yourself, with a fingertip can dig beneath the pec major and search the pec minor till you locate the tender spots-- then press on it and hold the compression for about 10 seconds, let up a little then press again to see if it is still tender; repeat the pressure but with a bit more pressure this time. When the trigger point releases you will feel a wave of relief as the tenderness goes away. Surgery will still be available option if working the trigger points doesn't help.

In SOME cases the extreme stretching employed by SOME PTs can make exacerbate the problem. And exercise after the TOS is cured.

Corpse pose for stretching
 

Hi Jo*mar
A very good suggestion:)
I'm realising that its a process not to be rushed....... work will just have to wait, I can't afford to push myself through this and run the risk of undoing the surgery. I'd be mortified if I ended up getting addition probs such as nerve damage or scar tissue because I haven't allowed myself sufficient time to recover..... after all the arm in question is my writing side.
I may have to wait and see what happens regarding my job as I'm still due another first rib excision for my left side ( VTOS ), I will learn more about this after my follow-up with my surgeon 20/10/11. I was wondering how long to have off from work? I don't know who I'm trying to kid as at the moment I'm being signed off work in 2 week slots ( to see how things go and its beginning to get really annoying now having to keep returning to my doctors for a sick certificate for my employers- I think I should allow myself to be off at least until I see my surgeon). I keep thinking I'm getting there but then encounter probs when I attempt simple tasks- very frustrating and I feel guilty for my family doing all the housework ( they have been so supportive-probably will be sick of me come the second op though ).
On a good note: I seem to be improving daily:D and swelling is so much better, my concern at the moment is that I'm still quite breathless on walking and headachy (SCM symptoms) if upright for too long!
I must say, looking on this forum your advice is fantastic.... you really do make a difference!!!!
Thanks and best wishes to all out there.:grouphug:
From SD38

Doing the Corpse pose
 

Hi Jo*mar
I've tried out the Corpse pose...... amazing how just a simple position can really help to relax and gently stretch you. It seems quite beneficial in stretching out my pec and underarm region which is obviously pretty tight after my op. I will do this afew times a day I think. Thanks for the tip!:winky:
Best wishes to you and all out there.
From SD38

Thanks for your post GaryA - am planning on scanning the report and putting it up here, as it could be beneficial for someone going through a nerve conduction test.

I have been told by multiple physical therapists and chiropractors that my pectoralis minor is really tight, I am currently looking into trigger points, and I will definitely look into your tip. :hug:

I agree that, the extreme stretching used by some physical therapists really aggravate my condition.

" Tiger Balm and positive thinking helps.....":winky:

OH YEAH!!!!!!! That's my little jar of wonder too. Good old Tiger Balm, far more effective than all the drug( ibuprofen and other NSAIDS ) induced muscle rubs I've tried in the past.

Best of luck with pain management. SD38:)