I know we have posted this question before, but with all the newbies, especially Colorado7 and marabunta who seem especially knowledgeable, I thought it would be good to get everyone's input on the different ways of diagnosing Tos.

For example I was able to have an Mri/Mra performed.

I was hoping everyone would be able to share the tests that were used for their diagnosis, and how effective they were, and for those who had the surgery, did they help you at all in making that decision or were they the deciding factor?? Also would you recommend that test to others?

For myself, one of the tests that I had is the MRI/MRA . I had it performed here in the Bay Area. The doctor is no longer there and is practicing elsewhere, I understand. If I were to do it again, I would go down to Southern Calif. and have it done by Dr. Collins for personal reasons that I will share if you want to p.m. me. Also because there are far more TOS physicians there that I might also consult with while there as there as fewer here every day.

I would see Dr. Collin's as he is known for the amount of time he spends talking to his patients, explaining his findings to them and educating them about TOS. In my experience, the Radiologist inthe Bay area didn't do this.

I don't feel like the MRI/MRA was a deciding factor for me. It is a very expensive procedure that only provides limited information. For example, my prior doctor's MRI/MRA missed 2 of the nerves involved in my compression; and I was told by another physician at UCSF who's name I don't recall that the MRI/MRA's can show a compression one day and not show a compression another. They are not the difinitive diagnosis that some might be hoping they are.

I also had a doppler test and numerous diagnositics performed by Peter Edglow that I wil go into further if any one wants that information, that helped to confirm my TOS. I also went through the "standards", the hands up, etc. etc.

I decided to have surgery only after 1 year and 1/2 of Edglow p.t. and after the pain and vascular symptoms continued and became more than I could tolerate. I can say that the surgery helped with my vascular symptoms, but I have been told by Dr.Ellis that the length of time of my compression and the incorrect care and p.t. contributed to the severity of my TOS, so surgery was a risk I was willing to take, even knowing that the long term outcome is not good. Currently I am feeling less pain, but still unalbe to drive, cook , clean, entertain, garden, basically have a life.

But, hopefully, eventually things will get better. I still feel like the Edglow protocol is what has helped most (besides the surgery) and pacing myself.

I hope others will add to this thread and share their experiences!! I think it could be really helpful to everyone!!

Thanks Guys!!!

G ~

My MRI/MRA by Dr. Collins is the only test I have had pre and post surgery.
It still shows a bilateral compression
And YES
Dr. C is the coolest person you will meet
You knows the anaytomy better than anyone on this earth.
Who would YOU see down in So Cal?
Dr. Agnew is my newest Neuro/Pain Management doc and he's in Santa Barbara.
So knowledgable about TOS.
He even compared Dr. C's films with us and showed us sided by side where the prob is...
But, I want a venogram, neurogram or doppler to be more definitive.
Surgery is not out of the question again but I don't see one person on this forum thats better from any one surgeon.
They all have different approaches.

But, then
Why would a well person be on the forum?

Here's what I used to post all of the time:

I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet 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 as a whole. 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 to rule out MS or other copycat conditions.

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 involves cut-downs along the arm to track blood flow, 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 (or is it MRIs? I always get this one wrong.) By Dr. Collins 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 $7,500 right now?)

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

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.

Try to figure out how you got TOS, if you do get diagnosed. 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.

bumping for other posts...

Dr Jordan does an ultrasound examination during an initial test block procedure. He looks real time at the blood flow during the procedure. I don't know if it has a specific name.

there is a news release form a presentation he made last Feb

here


Prioir to this test, the diagnosis was made by symptoms (numbness and weakness) and various maneuvers where I lost my pulse very quickly.


Johanna

I'll try to share some...not a good typing day, though!

The tests I've had, with results:

-Physical exams, of course...Dr. Centeno's was the most thorough soft-tissue exam I've had, I think, and he's the first one who mentioned TOS. I had another exam the following day by an IME PM&R doc, who also mentioned TOS...both of these dx based only on exam and history. Have had many exams that included specifics for TOS (Roos, Adson's, etc.)...pulse usually disappears, hand gets numb with Roos.
-EMG/NCV: 1st one showed slowing over the brachial plexus; 2nd one showed slowing of something compared to right arm.
-C-spine x-rays, MRI, shoulder MRIs, brachial plexus MRI: had disc bulging and encroachment on exit foramen at C5-7; BP MRI showed swollen lymph nodes. Shoulder MRI showed some leftovers after shoulder surgery, with joint and ligament repairs.
-Multitudes of injections! Most definitive was the interscalene (brachial plexus) block...arm was completely numb for a day, and numb enough to be unusable for a couple more days. Pain was gone for several hours, except some mild pain under shoulder blade. Also have had facet injections, scalene block, pec minor block, SC block, IMS, selective nerve root block, epidural steroid injection...feeling a bit like a pincushion after remembering all these!
-Dr. Centeno had me do a test where I stood on a platform, and it measured how steady my balance was. He said it was really off, but I was taking Lyrica at the time which made me dizzy, so I'm not sure if that was the cause.

I'm sure there have probably been more...just can't remember any more right now. I'll add later if I think of something else that might be helpful.

I've had a LOT of docs, from a wide variety of specialities, all come up with the TOS diagnosis...mine originated from a car accident, with obvious shoulder injuries and collarbone instability, so I'm sure having a clear precipitating factor helped piece things together. I will add, though, that even Dr. Centeno says he's not sure how much is due to ongoing compression, and how much is actual brachial plexus damage from the accident itself.

Gotta stop...

Take care, all!

If a person can get to a doctor that knows TOS it may cost less in time and money to get or not get a TOS DX first then work their way back. It also won't look like one has doctor shopped for pain meds and a DX's.

One does not need all the tests listed to DX TOS. Certain types with the new imaging can be clear.

Blood work will not DX TOS. It isn't a hematologic syndrome. It will cause arterial and venous blocks but thats all. Labs will rule out or in rheumatology problems but one can also have them along with TOS but they won't cause each others DX's. Different body systems again.

TOS also has NOTHING to do with Thyroid issues. This has been pounded out here before & it just isn't possible. That is a complete different body system. Many cases of TOS are DX'd in women over 40 and that happens to be the most commen age for the DX's of Thyroid disease. Ask the TOP docs, they'll tell you.

Many have had to have tons of tests and walked a long road before finding out they have TOS. But if one suspects it after seeing one or two docs then get to a TOS doc and see what they say before subjecting yourself to more spent $ and pain.

I have dealt with this for over 10 yrs and had great results post op and a clear DX with his type of imaging almost 8 yrs ago by Brantigan.

And yes, I work in medicine, understand body systems and test results. This is not only my opinion but that of the TOS docs, research and medical history from when doctors started to understand different body systems and how they work.

Again, my opinion and NOT directed at anyone so don't take it that way.

I believe it depends on personal opinion and doctor.

I was over 40 and had no Thyroid or TOS symptoms. I was diagx with the thyroid problems after TOS injury. The spasms felt in my scalense and compression from the right is strangling my thyroid.

Sometimes I can have ok thyroid test and others off the wall. doctor did in my case relate the test readings to compression and spasms affecting limited space and inflamation of thyroid, specifically the right side compression area pressing.

The same with my eye sight and blurriness, a high day like today and the eyes are blurred, buy the time I calm it down tonight now, the vision is fine.
I trust my doctors.
Dianne

1: Vojnosanit Pregl. 2000 Nov-Dec;57(6):709-16. Links
[Multiple intrathoracic compression syndrome of thyroid etiology][Article in Serbian]
Ignjatovic M, Stanic V.
The aim of this article is to present a case report of multiple compression syndrome caused by intrathoracic thyroid papillary carcinoma and the review of compression intrathoracic syndrome of thyroid etiology. In our patient were confirmed: tracheal and esophageal deviation and compression, superior vena cava syndrome, downhill varices, chylothorax, pericardial effusion, compression of the left subclavian artery, unilateral lesion of recurrent and phrenic nerve, and brachial plexopathy. This was a unique case with multiple compression syndrome out of 2000 patients surgically treated for all kinds of thyroid diseases. Intrathoracic goiter can cause all the known symptoms and syndromes of intrathoracic compression with a possibility of rapid deterioration and fatal outcome.

PMID: 11332365 [PubMed - indexed for MEDLINE]

Compromising abnormalities of the brachial plexus as displayed by magnetic resonance imaging
Dr. James D. Collins 1 *, Marla L. Shaver 2, Anthony C. Disher 2, Theodore Q. Miller 2
1UCLA School of Medicine, Department of Radiological Sciences, Los Angeles, California
2The Charles R. Drew Postgraduate School of Medicine, Department of Radiology, Los Angeles, California


*Correspondence to James D. Collins, UCLA School of Medicine, Department of Radiological Sciences, 10833 Le Conte Avenue, Los Angeles, CA 90024-1721

Keywords
anatomy • brachial plexopathy • nerve model • neuropathy • MRI • patholog


Abstract
Magnetic resonance images (MRI) of brachial plexus anatomy bilaterally, not possible by plain radiographs or CT, were presented to the Vascular Surgery, Neurology, and the Neurosurgery departments. Patients were requested for MRI of their brachial plexus. They were referred for imaging and the imaging results were presented to the faculty and housestaff. Our technique was accepted and adopted to begin referrals for MRI evaluation of brachial plexopathy. Over 175 patients have been studied. Eighty-five patients were imaged with the 1.5 Tesla magnet (Signa; General Electric Medical Systems, Milwaukee, WI) 3-D reconstruction MRI. Coronal, transverse (axial), oblique transverse, and sagittal plane T1-weighted and selected T2-weighted pulse sequences were obtained at 4-5 mm slice thickness, 40-45 full field of view, and a 512 × 256 size matrix. Saline water bags were used to enhance the signal between the neck and the thorax. Sites of brachial plexus compromise were demonstrated. Our technique with 3-D reconstruction increased the definition of brachial plexus pathology. The increased anatomical definition enabled the vascular surgeons and neurosurgeons to improve patient care. Brachial plexus in vivo anatomy as displayed by MRI, magnetic resonance angiography (MRA), and 3-D reconstruction offered an opportunity to augment the teaching of clinical anatomy to medical students and health professionals. Selected case presentations (body builder, anomalous muscle, fractured clavicle, thyroid goiter, silicone breast implant rupture, and cervical rib) demonstrated compromise of the brachial plexus displayed by MRI. The MRI and 3-D reconstruction techniques, demonstrating the bilateral landmark anatomy, increased the definition of the clinical anatomy and resulted in greater knowledge of patient care management. © 1995 WiIey-Liss, Inc.



--------------------------------------------------------------------------------
Received: 22 March 1994; Revised: 6 September 1994
Digital Object Identifier (DOI)

10.1002/ca.980080102 About DOI

J. Noterman1, 2 , P. Dor1, 2 and A. M. Jortay1, 2

(1) Department of Neurosurgery, HÔpital St. Pierre, 1 rue Héger-Bordet, 1000 Brussels, Belgium
(2) Head and Neck Service, Institut Jules Bordet, Free University of Brussels, Brussels, Belgium


Abstract This is a report of 3 patients who had brachial plexus tumors associated with thyroid tumors. The brachial plexus tumors were schwannomas in 2 patients and a neurofibrosarcoma in one. The thyroid tumors were a carcinoma in 2 patients and a large colloid goiter in one. The association of these two conditions may be coincidental, particularly since they have nothing in common from the standpoints of embryology and pathology. However, it is interesting that approximately 10% of the reported cases of brachial plexus schwannoma have had an associated thyroid tumor.

Horner’s Syndrome and Thyroid Neoplasms - group of 6 »
I Leuchter, M Becker, R Mickel, P Dulguerov - ORL, 2002 - content.karger.com
... 1988) 65 cases of thyroid enlargement with compression syndromes ... and hand pain due
to brachial plexus invasion ... Thyroid neoplasms, benign or malignant, are an un ...
Cited by 2 - Related Articles - Web Search - BL Direct

Ectopic thyroid tissue on the ascending aorta: an operative finding - group of 3 »
RJ Williams, G Lindop, J Butler - 2002 - Soc Thorac Surgeons
... present with symptoms due to compression of adjacent ... Aberrant thyroid gland attached
to ascending aorta ... in a closed traction injury or a brachial plexus neuritis ...
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The only test I would rely on are the EMG's and the MRA/MRI/MRV.....I know I sound like a broken record, but I only believe in these tests...now maybe I'm lucky because my tests were so clear and there was no need to continue more testing, but some of other seem painful and expensive, and doctors can have different opinions sometimes.......I just hate the guessing part.

Ann

Ditto from me. Maybe because I've had so many tests that were negative, or weren't done as prescribed, or insurance redirected to the wrong doc, etc. One of the worst is Docs assuming that all my symptoms are related to my degenerating cervical spine issues. And then they tell me I shouldn't be having all these symptoms! Well, duh, did it ever occur to them that someone could have more than one disorder at the same time? and maybe THAT's where the symptoms are coming from?