My first post. I have read a lot here, and there are lots of knowledgable folks. hope you can all help me too

I have seen several docs, got lucky to find a few who recognize adn treat TOS. However, before surgery I want to know which of all these tests, and where/who they are done have the best chance of helping my docs decide.

In no particular order:
Dr. Filler's nurogram
Dr. Collins MRI-MRA-MRV in LA
EMG and nerve conduction

I think x-ray is not helpful, I don't think I have cervical ribs
I also heard ultrasound of the arteries and veins can be good.

I heard Dr. Filler's test can be done several places around the country.
I also read that scalen anterior block is used before surgery.

I apologize because much of this has been covered before, but I keep waiting for something new and exciting!

So for one with no cervical ribs, TOS on both sides, after overuse on computer, how does one decide before surgery?

Thanks

Hello Walker, welcome to the forum.

Have you had some long term - TOS based PT {expert or advanced} , posture/bodywork, alternative therapies and /or expert chiropractic help?

What are you most bothersome symptoms?

Others will be along with info on those tests , I'm sure - I haven't had any of those.

moving my answer along with the original post:



Dr. Jordan does an ultrasound procedure during his scalene block and combines it with some type of EMG. He looks at Brachial plaexus, ulnar nerve and carpal tunnel for impingemnet and blood flow. He says he sees everything that can be seen in the MRI/MRA but the procedure is faster and much less expensive. Course less expensive to you doens't always mean less expensive overall since it also depends on what your insurance will cover as Jordan is out of network for all except medicare.

I really like Dr Jordan, had two sets of botox with him, but I am looking at surgery right now bc botox doesn't seem to be the answer for me.


Also, I am following up with a neurography (dr. fillers) bc I want to see the actual compression location before anyone cuts me open.

Johanna

Hi Walker,

Some tests are required in order to rule out other possible dx's, chest x-rays are usually done first off, not only to check for cervical ribs but to rule out abnormally long C-7 projections, and to check for tumors that could be compressing the brachial plexus, for instance. EMG/NCV's can be useful if nerve damage has already occurred that can be picked up by the equipment, an abnormal EMG often speeds up your access to Drs and treatment, including surgery. The one that is considered most indicative of TOS is called the C8 ulnar nerve root study across the brachial plexus. You may need to look for a neurologist at a university or large teaching hospital who has the training to do this.

Have you ruled out any vascular involvement? Doppler studies, done lying down and in positions that sx occur can be helpful.

At this time the tests are still lacking in precision - bone is easily seen but soft tissue just does not show up as well. The best TOS surgeons gather all the info they can from tests, but also depend on a very thorough clinical exam - amazingly thorough. Once they get in the OR and see the situation first-hand though, it is their experience of having done hundreds of these surgeries that allows them to quickly recognize what is causing the problems you are experiencing.

I can't stress enough the importance of choosing a Dr with a great deal of experience, who has a good reputation among former patients, and whom you personally trust and feel comfortable with. Don't settle for anything less because it's more convenient, or someone else thinks you should, or you've been through lots of surgeries before. You deserve the best surgeon working around your nerves!

beth

Thank you.

My limited reading says xray and cat scan shows bone, mri shows soft tissues. I am collecting a list of people who do mri's and catscans.

Is there a difference between looking at bone and soft tissue for surgeons?

special MRI's show special issues. special surgeons tend to like special MRI's.
MRI/MRA with contrast can show vascular compression
MR neurography (special MRI) can show nerve compression
Spiral CT (used in Denver) I think shows some good combination of bone/soft tissue.

Here's my two cents, for what it's worth. I'm kind of surprised no one has mentioned it by this point, actually. I think it should be up to the doctors as to what tests to order, not us patients.

While I am all for becoming familiar with the various testing procedures, new technologies, differential diagnoses, best places to have everything done, read, filmed, interpreted and on and on, I know from personal experience you can waste a lot of time energy and money - and even lose credibility with your specialists - by essentially demanding that certain tests be done STAT!

Tests ordered too early will be out of date by the time they are actually needed for their intended purpose (review by a top surgeon, for example), and will only have to be repeated.

Same with tests ordered correctly but done at a facility other than the one favored by the doctor who will ultimately interpret the results, wanting to use not only his or her preferred lab but favorite radiologist as well.

What's the name of that old song! 'ya got the right string, baby but the wrong yo yo....

Just saying, be careful. Discuss all the test options to your heart's desire once you find a trusted doc who will work with you in sorting through this nasty business. Diagnosing TOS is not easy and is part of what makes it a controversial area of medicine.

But go slow, stay aware that timing is important here and go one step at a time. The key is finding that one good partner/doc to drive everything: tests, referrals, rx's, all of it.

Or maybe two. Not saying it's easy. But it ain't us! We de sick ones! Our job is to find the specialists and let them do their jobs (with plenty of healthy input from the patient, but their decisions are final).

And hey, bottom line? TOS remains to this day primarily a clinical diagnosis anyways. Go figure...

Hope I have not offended anyone as that is not my intention here at all. I'm just speaking from personal experience, having outsmarted myself more than once asking for expensive (and painful!) tests that turned out to be a waste of time!

Alison

Yes, that's probably true - you can't just go in to any doc and request the test of your choice.
I suppose some people could - LOL -but the doc reading/interpreting the results is as important as well as how carefully the tests are done also.

but it is good to learn about all the options - just in case.

I totally agree that finding a very good base doctor is very important.

I think ultimately it is the choice of doctor and his understanding, knowledge, and his treatment protocol of TOS that is a major factor.
We can have all the test in hand and show up at a doctor and it will be Greek to him unless it is his protocol and specialty.
AS there IS NO protocol to diagx and or treat TOS!
Much literature is written, but an individual doctor thing.

We have to have on our team yes team, a truly knowledgeable doctor of TOS, with maybe a referral to him by our PCP or ortho etc, with a chest x-ray, perhaps an MRI or EMG. But knowing this new doctor is likely going to use his own person to do an EMG, his own type of MRI and facility.

By now the pcp or treating doctor has had you perhaps do PT and see a pain management specialist for injections, and blocks.
All the stops are pulled before surgery. Surgery is the last resort. All other diagx have to be ruled out.

There is not one protocol in diagx TOS, test ordered, or treatment plan.
Test are subjective to interpretation, Sometime even three doctors go about getting the diagx three different ways.
I saw a television show that was classic TOS, symptoms, and test showed a compression, perhaps a tumor. When the patient was opened up it was a mass growing over the heart and Thoracic inlet vascular/neuro structures.

The doctor had to dissect the material off the brachial plexus are and heart. chest wall.
The diagx: A micro infectious bacterial had been inhaled, went to the nose, chest and lungs. While in the body multiplied, it attached to the structures and created a growth, a difficult hardened growth,

Now could you imagine going to a doctor, that they did a few/several, not hundreds of TOS surgery's felt this was what you had and opened you up and found this?
His best bet is to close up and get a cardio and thoracic surgeon real fast....

Sometimes what looks like TOS can be our own bodies anomalies that are structured from the norm, vascular and nerves passing through sites they don’t belong, a misshapen muscle pattern that is not typically seen. TOS injury or repetitive job incites this.

A Great TOS doctor can tentatively, not definitively tell you what kind of TOS you have and why. But, unless you are opened up, it is not a clear a picture. NOT like having appendicitis and needing an operation to remove it.

So basic test are a norm, but to spend tons of physical effort, time, pain and money: wait for a specialist, or treating doctor to order test he utilizes.

If you want particular test done, you may be choosing your doctor by their unique protocol. If they use that tool and other doctors don't you will be going to that doctor, and he will order that test....If you are in the W/C system, you are at the mercy of their doctor until you can legally find your own treating doctor, I think it is six months in PA.

OT:
I can't treat a TOS person, but I can tell looking at them fairly certainly that they have TOS when I meet them....
You can tell a TOSER by:

Rounded shoulders, swan neck from reverse loradosis, hump on the neck from a secondary reaction to the reverse curve (loradosis), holding arm, flinch when doors open or close around them, Instinct to turn around and let the butt catch it, or use the legs or butt to hole open. Use someone to pitch in to cut food, or order easy to cut with a fork food, we use two hand for coffee, Hold arm to keep elbow from rubbing tables, Wiggle, squirm, stand and rub, like a TOS dance!

Don't reach for higher items, push suitcases with feet, lots of warm clothes, GIVE AWAY: wearing cotton gloves in the summer, pillow for our lap in restaurants, pillows in the car.

IF you looked in first aid stuff, heating pad, BioFreeze or rubs, lidocain patches, hot water bottle, bed buddy for microwave, blue ice bags or peas in fridge, heated throw blanket-year round, socks on feet, No gallon size milk containers, gizmos to open jars, fat handles on the cooking utensils, Pans and pots that have two handles, Fat Pens, headsets for our phones we forget to use, Roll out of beds like logs instead of sitting up right and jumping out, Would love a hot soak in the tub, but seems like too much effort,

Sorry to get off the topic, But thoughts of the tosers flow at weird moments..
Seize the moment.

Sea Pines,

I agree with you and Di Marie, as well. The MOST important thing is to find a truly experienced TOS Dr who you feel good about, if you don't truly trust that your Dr knows what he is about, then get to one who does! Once you have, by all means, participate in your care, ask questions, but let the Dr do his job. Each TOS Dr has his own approach, philosophy, preferred tests, people in the field he respects (or not), and until you see that specialist you won't know if that $3000 test was worth the time, money and effort it cost you to obtain it.

But basics - like chest xrays, regular MRI's, EMG's, Dopplers and/or CT with or without contrast, maybe others, MAY be ordered by your PCP or a neurologist or other Dr long before you see a specialist, in order to RULE OUT other dx's - because TOS is still a dx that is considered after other more common dx's are discarded. So you might not have any say over whether or not these tests are ordered either - it's all part of the journey to a TOS dx, unless you happen to have a very obvious c-rib or vascular problem that is spotted very quickly.

beth