[tiggers]

Hi everyone.
I usually post on the Chronic Pain and Spinal boards.

My Osteopath therapist told me last week that some of my problems may be stemming from my brachial plexus (think that is the correct terminology).
I am very tight in that area on both sides.

I have cervical spine problems and thought all the symptoms stemmed from that. The last MRI did not show "enough" for more surgery according to my neurosurgeon. There is an osteophyte pressing on the thecal sac at C6-7 as well as a small bulge at C3-4. I am fused at C5-6.
Degenerating discs at C6-7 and C7-T1.
Had a foraminotomy at C6-7 C7-T1 in 2006.

I have heavy tingling and burning in both arms and hands and fingers. Some fingers get totally numb. When my medication level is low it is agonizing pain.
In the morning it is the worst, sometimes going on most of the day. Also neck pain upon activity.

I take Gabapentin 3200jm/day and Nortriptyline 20mg/day, cannot take more nortriptyline as I get huge memory blanks at 40mg/day. I have morphine for BT pain, I can tolerate a super low dose only.

Does an EMG test definitely show TOS?

Any thoughts anyone??

OH , I did read all the links at the top.

Thanks'
Bonnie

[tshadow]

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. MS and other illnesses can mimic TOS and are somewhat easily ruled out.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or structural 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. Do not be surprised if these come out normal, but you might still have neurological TOS.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but most 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 – Dr. Togut explains that it is not the correct testing for TOS type nerve damage, but especially for work comp cases it is required. Many of us will have signs of carpal tunnel, elbow or shoulder damage. This does not mean you should rush to an orthopedic surgery however. 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 IV and possibly 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 CTs? I always get this one wrong.) By Dr. Collins of UCLA 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 $12,000 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 who 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. You should have a pain management doctor as part of your team. Usually these are anesthesiologists who have terminal or hospice care as their background. They are the ones who have the malpractice coverage to handle the opiate prescriptions, the expertise to do implant surgeries for pain, as well as trigger point, botox and other modalities for pain. Many of us are on the highest pain medications possible as the TOS pain for many can be unexpectedly high. These docs also treat RSD, fibromyalgia and other nerve damage that can stem from TOS.

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. There is also the Sharon Butler system. You can get both via mail, for your own home use.

Try to stop using the computer and at any cost, PLEASE get voice software. Dragon naturally speaking is what I use. Just the pose at the computer, called “the gargoyle” pose, can trigger neurogenic TOS and RSD symptoms to flare.

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, because if you look at how you spend your time, this is where / what you probably do the most if you are working full-time, 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. And do NOT take anyone’s advice on this, ONLY an experienced, good, work comp attorney who has handled repetitive strain injuries to the upper body should be sought and the consult should absolutely cost nothing – FREE. No matter what, please get to an attorney to know your rights, and also, to know what you are RESPONSIBLE for also! There are time-sensitive forms, etc. You should get and keep a copy of every medical report and test result and give these to each new doctor that you see. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

Copyright 2003 - 2008

[tshadow]

Sorry the type ended up so small.

I tried to edit it larger, but it didn't allow me to do so.

No, there is not a definitive, for sure, TOS test.

Your symptoms sound like TOS. TOS and cervical issues are very, very hard to separate and identify. The best tests would be a scalene block and the EMG / nerve test of the C-8 nerve. But you could still have those come out normal, or not have too much of a reaction to the scalene block, and still have TOS.

Best of luck to you on your healing path. TOS for me is horribly painful, and I am bedridden 95% of the time right now because of the pain.

[tiggers]

Thanks for the great information.
It sounds like a very long road!!

I am already very tired of all this, it has been over 2 years now of pain and uncertainty.

I know lots of you have had pain for a lot longer.

I was fine until the cervical issues started 2 years ago.

The EMG test I had last year was normal except for the C6 nerve.
The muscle part of the test was sooooooo painful.

I use my laptop sitting in a recliner chair. My neck and arms supported.

[tshadow]

Oh Tiggers, yes, this entire TOS thing is long, painful, frustrating and the thing that I come back to is that it is so rare, that most if not all docs generally do not understand our symptoms fully. We have such a small choice of docs (compared to other illnesses) from which to choose, and then if one of them doesn't feel like treating TOSers anymore - we seem to burn out our pain mgt. docs - then we're left having to find another doctor, and it does begin to feel like we're so alone.

That's why this site is so very important. We have that handfull of good docs who have dedicated their lives to treating us, whether with surgery or not, and a few PT angels who help us. But for the most part, this is a very lonely journey.

When we've had our TOS meetings in Southern California, when people meet they practically (well they do) have TEARS in their eyes from meeting other REAL people (all women so far in person) who have this injury, illness, syndrome. Even though we have slightly different versions of TOS, it only takes a few minutes to see that we ALL have it, it isn't in our head, and those weird symptoms we have are also felt by others. We also, as a group, are or have been so utterally HARD WORKING, ambitious, creative and generally such great and caring people, that one stops thinking it had anything to do with fault.

Yes, it's so very hard. We don't give up, though. We keep eachother going.

[tiggers]

I am so glad you have found a good support group.
I find being on the spine and chronic pain forums in several different communities has really helped me.
I have found out so much information that way, things that are not in any site you can find online. So much technical information about our illnesses is only repeated on all the "online" places. Occasionally I will find something new but not often.
It looks like I should be hoping my problems stem from cervical rather than TOS, although either way is not good.
My doctor says I am now in a chronic pain syndrome and doubts that surgery would help these symptoms.
My neurosurgeon claims that since the MRI on my neck does not show enough to operate at this time I must have nerves being compressed by the "soft tissues".
Sorry gotta go, I have only been up 45min and my hands and arms are hurting too much to type any longer.
Cheers

[tshadow]

We're here for you any time.

I'm going to do a new, big prayer project so if you don't mind, I'm adding your name to it now. God keep you and hopefully I am asking that we all get some relief.