Diagnosis

Physical examination is most helpful. Common findings are tenderness over the scalene muscles, located about one inch to the side of the wind pipe; pressure on this spot causes pain or tingling down the arm; rotating or tilting the head to one side causes pain in the opposite shoulder or arm; and elevating the arms in the "stick-em-up" position reproduces the symptoms of pain, numbness, and tingling in the arm and hand.

Diagnostic tests, such as EMG's (electromyography’s) or NCV's (Nerve Conduction Velocities), may show non-specific abnormalities, but in most people with TOS, these tests are normal. Neck or chest x-rays may show a cervical rib (extra rib). Loss of the pulse at the wrist when elevating the arm or when turning the neck to the side (Adson's sign), has been thought by some to be an important diagnostic sign. However, it is sometimes unreliable because many normal people also lose their pulse in the same positions, and the majority of people with TOS do not lose their pulse in these positions. Shrinkage of hand muscles (atrophy) occurs in about 1% of people with TOS, and these people will have nerve tests that show a typical pattern of ulnar nerve damage.

To aid in the diagnosis of vascular or arterial TOS, vascular studies may also be recommended by your doctor. The most non-invasive would be a Doppler study, which is an ultra-sound picture of your veins and arteries. An MRA (magnetic resonance angiography) is another option. An MRA is the same as an MRI (magnetic resonance imaging), only a special dye is injected into the veins so they show up during the images. This makes it easier for doctors to see if there is a blockage in the veins. A more invasive test would be a venogram, which requires an IV to be started. Dye is injected into the veins while the images are being taken. This gives doctors a clear picture of the entire vein as it travels through the arm. Venograms are typically a last resort, but are often necessary in the diagnosis and treatment of severe vascular and arterial TOS.

There are a number of things you can do to help your doctor with either a diagnosis or treatment. Here are some helpful hints:

1. Keep a pain diary – It is often hard to remember what may have been different from one day to another when it comes to living with chronic pain. Keep a daily pain diary or journal and list what was better/worse, what may have caused a flare-up, what lessened your symptoms, etc… This will be helpful to you and your doctor.

2. Be prepared for appointments – Doctors are very busy! Be prepared for your appointments. Make a list of questions you would like answered and go through it with your doctor.

3. Doctors and mind reading – Doctors cannot read your mind, though I’m sure you wish they could sometimes! Be open with your doctor. Make a list of your symptoms so you don’t forget something important. Try to be as detailed as possible in describing your symptoms. Proper diagnosis and treatment cannot be made unless you TELL YOUR DOCTOR.

4. Visual Symptoms – Oftentimes with vascular TOS, there is a visual change in the color of the arm(s). Try to find the position that causes these symptoms to occur. If you notice discoloration (Ex. Bluing), stop and look at how you are standing/sitting when the symptom came on. Finding these positions can be of great benefit to your doctors. If you can re-create the symptom for your doctor, it will make diagnostic testing easier and more accurate. *Note: If a certain position creates discoloration, try to avoid it as much as possible unless otherwise specified by your doctor (Ex. During appt.’s or diagnostic testing).

5. Have a medical history letter on hand – Unfortunately, it is common with TOS to have to search for doctors skilled in this field. Many times, numerous doctors will have to be consulted before finding the one who meets your needs. Keep an updated letter on hand to give to your doctors on first time visits. List the onset of your TOS (or pain if you haven’t been diagnosed yet), what caused it (if known), doctors you have seen, tests performed, medications tried, etc… This will help give your doctor a detailed look at what’s been going on, and will save you from having to repeat your story time and time again!

6. Get your records – It is very important that you get copies of your test results, surgical reports, doctors notes, etc… They are very helpful when seeing a new doctor or changing doctors. Keep them filed together for easy access.

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