being diagnosed with TOS
 

Hello, im new to this site, just came across it whilst i was researching about MRA's.....im gonna tell you a little about my problem and would love some feedback from anyone who has experience same or similar to me...

just over 3 years ago i was healthy and never had any probs with my arms....then i fell down the stairs and landed directly on my mid back and jolting my neck too.

about 6 months after this i developed pain in my right thumb - couple of months after this started, this nagging dull pain developed in my right shoulder blade....more symptoms slowly came after this (all on the right hand side) :

little finger is wobbly and feels like it doesnt belong to me - kinda numb feeling
fatigued arm - feeling heavy
coldness in shoulder blade and right hand - sometimes this can change to hot feeling, but more often cold!
some muscle wasteage in right hand
right hand changes in colour - nail beds can go really purple if i get a bit cold
neck is weak - feel like i cant support my head
cant look downwards for anylength of time as it hurts!
cant sit up unsupported for very long
right collar bone has protuded and feels very bony these days - it aches and pain shoots up towards my the front of my neck and jaw.

the list sometimes seems endless!

i left an office job because of the pain, im on my 3rd doctor now and have had x-rays, MRI's (with and without contrast), my pulse dimished on the adsons test, tender on lower C/upper T vertebrae, also doc pushed on something next to my windpipe which almost made me cry with pain!.

from what i've read i think i may have vascular form of TOS?....help please - im finding diagnosis very difficult!

Hi.

Depending on what state your in someone may be able to recommend a dr. who specialises in TOS. Did you ever have a EMG or Scep? they may be able to identify nerve troubles.

Hi, thanks for the reply!. I have had a EMG and nerve study - both normal. Now a new doctor im with is arranging a MRA for me. I live in the UK and there just dont seem to be many doctors here who specialise, or even believe in TOS!

While waiting for the MRA , start searching for some names of really good physical therapy people, body workers, therapeutic massage, myofascial release, osteopathic drs or chiropractors.

any or a mix of those will probable be what you need unless something specific {surgical} shows in the MRA. {all must be very good and knowledgeable about soft tissue problems and work with you - no cookie cutter rehab plan}

The collar bone thing sounds almost like a severe dislocation/subluxation of some sort.
could you be hypermobile?

Useful info-
http://neurotalk.psychcentral.com/thread84.html
post #1 has hypermobile info link in it.

dr & PTs listings-
http://neurotalk.psychcentral.com/thread135.html

thanks jo, i have seen 2 PT's and it was the 2nd one i saw who first mentioned TOS....the exercises seemed to help, but they became painful a few months into the programme.

My current dr agrees that my collar bone is a little bony and is protruding slightly, but says that this can happen as we get older - but im only 26!!. I read that it can be related to TOS as it can spread over to the chest wall and cause the collarbone to slip when the muscles that hold it up become fatigued?. Ive not heard about the hypermobilised thing you mentioned?

i've just become very fed up with it all over the last few years and dont think that im ever going to receive a TOS diagnosis and be treated correctly - the dr's here in the UK just dont seem to specialise...or even believe in TOS!

Hello Tracey & welcome!
Sounds like TOS for sure- and given your Adson test, I feel like despite your other test results, they really have to look at TOS as a resonable suspect!!!

Glad you found yourself here :) This board is full of info you can use! Perhaps there's some UK members here you can talk with for info too.

Hello Tracey, I'm so pleased to meet you.

I'm so glad you've found your way to this forum, but if there's anything the rest of us can do, please don't hesitate to ask.

Hi, yeah im going to have a look through and see if i can find any UK members as it could be useful for comparing dr's etc....however, this seems like a good place to get (and give!) support - which i think is really important with TOS as its really hard for anyone who doesnt have it to appreciate your pain!.

Im convinced that it is TOS too - i have had dr's make me feel like its all in my head!....i know its not and have found a dr who seems to have more of an understanding of TOS - fingers crossed something shows on the MRA!.

Hello! many thanks for your kind welcome! Seems like a very supportive community here, im suprised at how many other people have TOS - it can be a very lonely condition!. Im from the UK so hoping to find some fellow UK members once i've looked around!

Dear Tracy,

I hardly ever post, and hardly ever peek in, due to high pain, but I couldn't pass over your post.

Your symptoms came on VERY simlarly to mine, except I didn't have a specific fall, I just had hours on a computer, working files and doing administrative work.

Now, despite your "fall" that you describe, your job duties could have caused TOS or exacerbated what might of just healed, so you MUST, MUST see a work comp attorney and talk to someone FOR FREE about UPPER EXTREMITY REPETITIVE INJURY TO YOUR right arm or wherever it is. Why? Because this can be a lifelong injury that needs permanent, temporary disabilility, medical help, I even had daily nurse. And USUALLY this is a work caused injury unless you have a specific rib poking the nerves, veins, etc. You'll learn all of the specifics, but just don't throw out a possible case despite having quit in ignorance of your rights.

I was a work comp defense attorney, I know that most states will sustain a case despite having quit in ignorance of your rights given the correct factual legal and medical pattern. Only an attorney (or two) will be able to tell you ifyou have this.

Next, I'll post what took me a long time to learn about testing for TOS. I think you might have neurogenic TOS and vascular TOS a little "off", but then, most docs don't know it after med school! (Vascular is a seen vein blockage while neuro describes the rest, pretty much, is an easy explanation without going into ALL of the particulars.)

God bless you.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS to rule these out, then you might have missed an obvious tumor, etc., but it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid can involve cut-downs along the arm to track blood flow or in an I.V., as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs and C.Ts. give another vision. CTs have very high radiation, and should not be repeated except for good reason. MRAs by Dr. Collins and Dr. Brantigan are considered the best and shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $10,000 right now and some insurance cover.)

8. Scalene block - if you feel relief for a brief period of time, this is the MOST positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

There are also a couple of “usual” conditions which go hand-in-hand with TOS; they include R.S.D. or C.R.P.S., fibromyalgia and autonomic neuropathy, as well as treatment for depression to handle the differing phases of ones’ life if TOS is determined to be present.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Getting a FREE work comp consultation is of the highest importance because if one considers what one does the most, it is usually working. Unless you KNOW your TOS was caused by an accident, or impinging rib that has been bothering you since birth, and if you have a good work history, as you try to figure out how you got TOS, even if you are not yet get diagnosed, you must cover your bases by filing a work comp claim form after a good free consultation. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

If you are sick or going to be sick through one year, you should also have a free Social Security consult and follow through with those filings.

I also suggest that after six months of absence from work, sending a certified mail receipt requested letter demanding identifications of any / all benefits for anyone disabled fully or partially from your company and to take any response to a licensed disability or insurance attorney.
Copyright 02-08

P.S. symptoms can change and/or move over time - I mean nerve pain. So when it is really bad, have faith that it will go into another cycle of not so bad, so you can survive.

Hi Tshadow!

Thanks very much for your reply!. The docs i've seen dont seem to have any idea if the fall i had has in any way caused this, they barely seem willing to comment on it!.

Im in the UK and no one here seems to know very much about TOS or related conditions and all my knowledge comes from one PT (who first mentioned it) and my own research!.

I worked for 5 years in insurance claims, heavy typing, constantly at my desk looking down at files....i left 18 months ago now, could i really consider a claim against them. a bit worried it would reflect badly for future employers!. There is little work i can do now - too painful at a desk all day, so im working in a school - cant imagine many jobs i could do fully now! Im only 26 and fed up with having to constantly rest my back - its ageing me!
x

Oh i also meant to say that the EMG and nerve conduction studies came back normal as did the MRI's, although i have pasted in something from my first MRI report:

In the right infraclavicluar fossa there is subtle asymmertry or the brachial plexus in the region of the plexus divisions on the right, with subtle asymmetry of the STIR signal intensity, and a slightly more bulky appearance to the neurovascular bundle at this site.

I then had another MRI with dye and when the report came back it did not mention asymmetry or the bulkiness of my neurovascular bundle!.....my dr did not seem to offer any explanation for this either.

That's interesting- at least you have some possible indication of some anomalies that could be a cause. Might be something to investigate and get clarification on.

Also if different radiologists/techs read the MRIs - then one was more precise than the other - and did the dr look at both sets of films and show you the films while explaining these findings?
{they shouldn't only go by the tech report - they should look at the films too}

oh I see- dr did not explain it..
I'd get the films {or copies of them} and find a good second opinion dr to read them.

I have copies of both MRI scans on CD and have saved copies of both reports on my laptop - was thinking of perhaps sending them too an american dr as there seem to be more specialists in the states than over here in the UK!. Im struggling to find a good TOS specialist over here!.

Im not sure if the doc did actually look at both scans, and he certainly didnt discuss them with me as we were looking at them - im going to push him more on that subject at my next appointment....i think sometimes i feel like im being a pain - also i start to get upset sometimes when i talk about it, so tend to keep things short!

I hope some of the ones that have been to the Denver docs will chime in.

I'm wondering if any of Denver drs would look at your films and a clear listing of all your symptoms and give their impression ??
- even though you are out of the country. I'm sure they would prefer to see you in person though - more hands on type of thing.

Hi Tracy W

It is sad to have to welcome you to this forum but at the same time you will get some great support and info from the members on here. I am in UK, with a difficult history, feel free to PM me anytime. Cannot guarantee a quick response as depends how I am as to when I come online.

Best wishes
Hx:)

Thanks Jo, It could be worth a go, it seems that american dr's seem to have more expertise in this area.

The coldness sensation in my hand and arm is steadily getting worse (getting it from shoulder blade down to my elbow now!) Which i think must be arterial?, getting a little more worried but do have MRA on may 2nd so im hopeful this will shed some light!.

Hiya,

Thanks for all the information - it has been really useful....particulary the part you mentioned about hyperthyriod, about 8 months ago, i noticed my hair thining!. I became panicstriken convinced i was going bald!....its not got much worse, but not any better either. I also get very tired and have had sleep problems for a while now....what treatment do you receive for it?

My symptoms do come and go in waves - and has changed over time as well. my 'cold' arm/hand symptom has got worse - now its hitting my shoulder blade down to the elbow!

Im also going to look for a personal injury lawyer to consult, i wouldnt have even considered it if you hadnt've told me!, so many thanks!

Tracey- Thyroid is a very easy condition to test for and to treat. It is a blood test, where they look for TSH levels, T3, T4, and sometimes hashimoto's antibodies which are abbreviated TPO.

If your TSH is elevated (above 3 or so) you can take a tiny hormone pill to provide the T4 hormone which will usually break down into the right amount of T3. It is no more difficult than takign a birth control pill.

Along with fatigue and hair loss, having thyroid problems will increase your general muscle pain and make repetitive strain injuries feel worse. I found my thyroid problems after I got TOS and treating it has made a big difference.


http://www.clicksmilies.com/s1106/sp...ilie/daisy.gif

good luck

Hi Tracey ! Welcome, although sorry you had to find us :wink:

I want to comment on your above quote. I really would not let the concern that a WC claim might hurt your future employment. First, I don't think that your previous employer can share that information on a reference check (Obviously, I have no idea about employment laws in the UK, I'm just going on general impression. Secondly, I think your current level of disability even though you are only 26 is exactly why you need to look into if your previous employment caused or contributed to your TOS. I don't think that you can afford not to pursue this. If your pain and symptoms grow over time, as it has for many of us, what employment could you see yourself being able to do when you're 50 or 60 ? What about if you get pregnant and have a child ? Perhaps you already have children, I'm just assuming that you would have mentioned difficulty caring for them if you did have kids. Mine are 12 and 13 and have to help take care of me....doing my laundry, housework, etc How awful would it be to have TOS and have to carry around a 30 to 40 pound toddler. Driving is difficult for me now, if I had to get a baby or small child into a carseat, I would never get to go anywhere ! So........my point is don't worry about offending your previous employer......do whatever you need to do to protect yourself and your future.

Most of us understand completely the difficulty you are having just trying to get a proper diagnosis, nevermind treatment plan. How can doctors not believe in a documented medical condition just because they are not knowledgable about it ? Ugh !!!! The belittling experience of having them imply that it is all in our heads, the accusitory tone when they deny reasonable pain management..........don't get me going !

Does the PT that unofficially diagnosed you have any suggestions about knowledgable doctors ?

hiya,
many thanks for your comments, you are completely right in what you say about workers comp...there is a different attitude in the UK about claiming, but enough members on here have inspired me to get a consultation to test the waters re a claim. my employers did have to make adjustments to my workplace and sent me to an occ therapist who said i probably wouldnt be able to work full time in the long term. so im sure i do have a case!

i do worry about the future - kids etc, even holding my friends toddlers is difficult enough, and as much as i love playing with them i am shattered and aching at the end of it.

the pt i saw moved on to a different hospital, i didnt get any details from her as didnt realise the significance of what she said to me, or the problems i would be faced with further down the line....

what type of tos do you suffer?

Tracey . . . did you fall down the stairs before any TOS symptoms ever showed up? Was this fall at work or while working? Was this before your work in insurance claims? Please clarify the timeline of activities and symptoms. . . . so I can see if they might have any bearing on your claim for worker's compensation.

Hi Lefthanded!.

Thanks for your post....

I fell down the stairs in April/May 2004 (i think!) I had been working in my insurance job since the start of 2002. At the end of 2004 i started to get pain in my right thumb - it was very tender and kept locking in place....then by march i had extreme dull nagging pain in my right shoulder blade and things escalated from there with more tos symptoms developing - heaviness in arm, weakness in arm/hand, feeling like i couldnt hold up my head. Slowly this spread to my collar bone, which has now become bony and protrudes a little compared to the left side.

I left this job in 2006 after an occupational therapist said its unlikely i could carry on in an office job for much longer.

I am based in the UK and i spoke to a solicitor who deals with upper limb diseases and was told that i didnt have a claim as no negligence could be proved against my ex-employers!. Im going to try another firm but im a little disheartend....

Hi, just wanted to clarify that i was symptom free before the fall as far as i can remember....

Tracey . . .

If you were symptom free and the fall happened at work, then the w/c statutes in the UK might cover your injury/condition. However, if you did not file a claim for your injuries within the statute of limitations, that could make things more difficult, if not impossible.

If the stairs were in good repair, there would be no liability issues whether you were an employee there when you fell or not; but if the lights were out, the stairs broken, or some such thing, then you might have an issue to resolve with them.

If the fall did not happen at work, but your symptoms were aggravated by work, that is a tougher claim. Your work duties have to cause the condition in most jurisdictions, not just hurt while you are working, to be compensable. Excessive and repeated stretching and reaching can contribute to TOS.

It sounds like you had some tendonitis or carpal tunnel syndrome developing in your right arm/hand before your fall. Then you had a fall which may or may not have made this worse. However, unless you had already filed and established the right hand (thumb) symptoms as work related, they will now be seen as a pre-existing condition, even if they have continued to get worse. Most repetitive use injuries have a longer statute of limitations for filing, but you still have to establish a work injury in a timely manner to be compensated.

It sounds like you have left that employment based on what a therapist told you. Filing against a previous employer is even trickier, because now you likely have yet another employer who could be seen as responsible. The more time and activity that passes between a work event and the filing or assertion of a work-related claim, the tougher it is to prove.

Sorry i forgot to mention that the fall was not at work - i was at a relatives house and just missed a corner step after closing a baby gate!. I had no problems before this happened.

The thumb symptoms happened approx 6 months after the fall and the shoulder/arm/hand symptoms developed shortly after this....

The dr's dont seem to be able to decide if this fall caused tos or not.

I think that it will perhaps not be possible for me to claim as it is difficult to prove what caused tos in my case. My job was a heavy phone/typing role and i would take upto 80 calls a day and have to type up notes for each of these calls. I was very stressed and developed heart palpatations because of it - i then changed to a different role within the same company, which was less heavy on the phone calls but involved more detailed typing and reading of files (looking downwards a lot). This role change happened about 6 months before the symptoms started.

not sure if this makes any difference....

Thanks so much for your advice!