Hi,

I've had TOS for a long time (10+years). Luckily, I've been able to manage my symptoms. I was very interested in the thread regarding thyroid disase and TOS. Lately, I've noticed that the muscles around my throat are going into a spasm. It feels like I'm getting strangled and makes me gag. I seem to be able to trigger it when I yawn. Does anyone else have this symptom? I am currently under the care of the endocrinologist for unexplained bone loss in my jaw. I do not have gum disease. I've had a bunch of blood tests done and so far, and have found out that I am very deficient in Vitamin D. My doctor has ruled out osteoporosis. I was on high dose vit. d supplements for a while and now my ionized calcium levels are too high. I just had a thyroid panel run so am now awaiting results.

Also, just wondering with the compression of nerves and blood vessels, wouldn't that affect the circulation to your brain or jaw? I've had a lot of brain fog lately and wondering if it's related to the TOS.

Hi, I'm sorry to hear of your symptoms. I do not suffer the same symptoms as you but I'm sure someon here can help. There are many people here with loads of medical knowledge. It may take alittle time for someone to read your post to help so hang in there!

Welcome!

Linda

brain fog is a big thyroid symptom for me....

on your thyroid panel, did you look for hashitmotos antibodies? I have seen some published work and also some things written at About.com regardign treating for thyroid deficiency if you have antibodies...even if the thyroid isn't out of range yet, the idea being that if you have antibodies, the thyroid is likely to be in decline, and by supplementing with thyroid hormones, you can slow the decline.

there are many others on here who have swallowing difficulties, which would seem related to your throat spasms. I had a little of this right after my second rib resection surgery- very weird and scary. You can also get temporary symtoms like that after botox injections, though I haven't had that myself.

In any case, these are just thoughts to chew on and perhaps run past your doctor. none of us are medical professionals, and we can only share our own personal experiences.

welcome to our forum!

Johanna

My endo never checked for the antibodies. She only checks TSH. My TSH has always been near 1. On my current blood draw, I had her check off almost everything on the thyroid panel (free T3, free T4, and antibodies) this time. Anyway, I figure something's going on because I've been losing hair, getting rashes, and my ca levels are elevated. The tingling in arms, which I've had for 10 years, seems to be about the same. BTW, does anyone experience tingling in their lower extremeties? I've had MRIs in my neck and spine years ago, and they were clean.

None of us are doctors here, and you have highly specified symptoms listed.

I saw a Diagnosis X recently where the fellow had calcium tumors in his thoracic region of his spine that mimiced our TOS symptoms.

I think it is terribly important to get all of the testing done to rule out other problems...definitely!!!

God bless you, and feel free to post about anything - this is not meant to chill your posts in any way, I just don't want you to rely on anything here.

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.

I get tingling in my toes- and my neuro told me that is it common for people who get TOS to be muscle clenchers, and muscle clenching can cause piriformis syndrome, which casues neuro symptoms in legs and feet...don't know if that's what your tingling is? but it's possible.

you can find some good stretches for piriformis syndrome if you search, they might help.

i wish you luck workign with yuor doctor to rule other factors out. Working with mind to finally track down my thyroid problem has been very helpful to me in terms of managing my TOS symptoms.



Johanna

Actually, I am very familiar with the Edgelow technique and was a patient of Peter Edgelow long ago. Over the years, I have seen neurologists and rheumatologists so I've already had the MRI's and x-rays done. The only place I haven't had an MRI is my midback. Even met with a prominent MS doctor to rule out MS. I know rheumatoid arthritis and lupus can be fairly difficult to diagnose, but so far (with the exception of my calcium) my bloodwork has always come back normal.