[farmgal]

Just wanted to introduce myself and possibly get some support/advice from the knowledgeable folks here. I was diagnosed with TOS back in 2005 so I've been lurking here for several years but have never posted before. I've done the Dr shuffle like most of you (started with chiro, then ortho & PT, neuro and now back to ortho again) and I'm getting so frustrated by the lack of knowledge in the medical community. Also frustrated by the fact this condition is likely to force me to find another vocation and means of supporting myself (I've been a software developer for the past 16 years).

Here's my situation. After at least a year of constant neck & shoulder pain and attempts to treat with chiropractic adjustments, I finally went to see an ortho in early 2005 and had a cervical MRI. The MRI showed disc bulges around c5/c6 along with some small bone spurs. This particular doc didn't think the disc bulges & bone spurs were enough to produce the symptoms I was experiencing (pain in neck & under collarbone, felt like butcher knife was lodged between my right shoulder blade & spine, daily tension headaches which were also on the right side, tingling & numbness down right arm and right hand would sometimes feel cold to the touch). He prescribed Mobic & Flexeril but I'm not a big pill person so I resisted initially. Finally, I couldn't take the pain anymore and tried the meds. Mobic didn't seem to do much but the Flexeril definitely helped the muscle spasms. This was my first clue that the problem seemed more muscular in origin.

This ortho also prescribed physical therapy so I tried about three different rounds of this before going back to see him. Some of the therapies helped, like the heat, massage and stretching. Other parts of PT seemed to hurt more than they helped . . . like the strength exercises and the electro-stim (seemed to aggrevate my already touchy nerves). I had also been researching my symptoms on the internet and came across some TOS sites. I mentioned TOS to the ortho at my next appointment and he agreed the symptoms were a good match but this was out of his league. He referred me to Dr. Meyer @ UAB and after waiting several months for an appointment, Dr Meyer diagnosed me w/TOS in late 2005. He basically told me to 'suck it up as long as I can' before considering surgery.

So after 'sucking it up' for a couple of years . . . just taking hot baths and the occasional muscle relaxer to cope, I started getting migraines at least twice a month. So I went to see a neuro that was a headache specialist and told him about the TOS diagnosis. I felt the migraines were related since they were always right sided as was my TOS. The headaches always started in the occiptial area and ended up feeling like someone was squeezing the back side of my right eyeball. After having this headache for several days, it would eventually turn into a full-blown migraine with auras and vomiting. Neuro thought with better pain control for the TOS that maybe the migraines could be reduced. So I walked out with scripts for Phrenelin Forte (for the daily headaches), Flexeril (for muscle spasms) and Imitrex spray (for the migraines). This combo worked well but the Flexeril made me so sleepy I couldn't take it during the day. I could take the Phrenelin without passing out but it was basically a barbituate/tylenol/caffiene combo and I worried about becoming too dependant if I took it daily.

So maybe a year later, I asked neuro doc if I could try something that would address more of the overall TOS pain and not just the headaches. So he swapped the Phrenelin for Tramadol which worked like a dream for another year or so which brings us almost to present day. About 2 months ago I started on a new project which has been extremely stressful. I think the extra stress has just pushed my TOS pain over the top. I started seeing a chiro again and getting massages every two weeks. The chiro also does trigger point injections so I've had many of those in the occipital, scalene, and rib area. I must say that I'm not a fan of needles, but these injections were like heaven . . . about 2 hrs of pure bliss and no pain. It was kind of shocking to remember what 'normal' feels like but it was a very temporary fix.

So here I am today, going back to the original ortho for a new MRI . . . hoping maybe the discs or bone spurs have gotten worse. Maybe that could explain the increased pain but my gut tells me it's the TOS. I have an appt with him on Monday to review the new MRI but the xray he took in his office last week (where my right collarbone was about 1 inch lower than the left) spoke volumes. I'm petrified about surgery . . . I don't really feel that any of the docs I've seen know enough about the condition to be removing my scalene muscle or chopping off my top rib. But I also can't keep scarfing down pain meds for the rest of my life . . . I'm only 36 but feel like I don't have any good options right now.

Anyway, that's pretty much the end of my story so if you made it this far you're a real trooper. Any advice, encouragement, Dr recommendations in the southeast US would be greatly appreciated. Thanks so much for listening.

[Jomar]

Hello farmgal,
I like your name.
I'm a farm girl too.

I'll have time tonight to add more nice to meet you.

[astern]

Hi farmgal, welcome to the club.

Sounds like you have done everything right! You might start taking the flexaril at night to avoid the drowsy days. Also I am told to 'switch up' the meds every year or so, so instead of flexaril a good alternate might be dantrium. Keep your body guessing, don't let it get used to the same routine of meds.

If you can't tolerate the pain any longer, surgery might be your last bet. Do go to an experienced TOS surgeon for this. I can't stress that enough.

again, welcome!

Anne

[(Broken Wings)]

Sounds all too familiar.

You know, I would take Baclofen for my daytime muscle relaxer. one to 1 1/2Flexeril at night. Flexeril will make me drowsy of the daytime too. Also OTCs if you can manage on them of the mornings. I do have to switch brands about 8-10 months.

I took Celebrex too and it helped me tremendously. You have cervical neck issues. So double the trouble. I had to take a Nexium 20 minutes before each time I took a Celebrex... if I could wait that long, and then eat a bite or two of something. I Took Celebrex 2 and 3times a day for 6 or 7 years. I would go outside and eat the green grass before I'd take a Celebrex without Nexium and food on my stomach. I used to say "If the next one kills me I have to take this one." Bad times, little buddy. Don't want to remember.

Yogurt helps the stomach irritation and constipation from all the medications and vitamins too.

Water is also a must!!!!!!!!!!!!

If I need it, I'll take 1/2 of a Flexeril in the afternoon and a Darvon 65, especially if I've driven. Helps the arm pain tremendously and may help prevent pain overload and all the bad symptoms from rearing their ugly heads.

Also a little restful relaxation, something soothing to you, for about 30minutes to an hour. Candles, music, low lighting, or no noise and no lights. Positive thinking, meditation or idleness is key here. Not negative thoughts for this time. a few stretches will go a long way here. find some you can do.

And yes, I have found the TOS medical wilderness. Be very cautious. I know TOS is frustrating to providers. Maybe there's just not many good options for TOSers. That's been more my reality in my quest for help.

I've had to depend on good doctoring, medical advice and experience when and where I could find it. I've also had to go outside the box of "normal medical stuff" to find some relief and other comforting things.

Don't give up. You are young.

Keep seaching and trying things to see if you can benefit from our ventures. I wrote a "51 Tips for TOSers" if you can find that. It's not always the most expensive things that can give you relief, but a little relief can go a long way.

A good night's sleep can take care of a lot. A shower or bath before bed is a good start. I would have to medicate more than I was willing to get more than 4 hours sleep. My tired body would thank me for taking whatever it took at that point. I've been hard on me too.

I have manageable complaints right now and I'm very thankful that I've came this far.

I do not regress gracefully. I will not give up. I'll try about anything. I may have to unwillingly lay down, but I'll get back up fighting every time.

If God wanted my attention, he certainly got it with TOS.

my apologies to you all. I don't know why I'm always so long with a post...

Originally Posted by farmgal

Just wanted to introduce myself and possibly get some support/advice from the knowledgeable folks here. I was diagnosed with TOS back in 2005 so I've been lurking here for several years but have never posted before. I've done the Dr shuffle like most of you (started with chiro, then ortho & PT, neuro and now back to ortho again) and I'm getting so frustrated by the lack of knowledge in the medical community. Also frustrated by the fact this condition is likely to force me to find another vocation and means of supporting myself (I've been a software developer for the past 16 years).

Here's my situation. After at least a year of constant neck & shoulder pain and attempts to treat with chiropractic adjustments, I finally went to see an ortho in early 2005 and had a cervical MRI. The MRI showed disc bulges around c5/c6 along with some small bone spurs. This particular doc didn't think the disc bulges & bone spurs were enough to produce the symptoms I was experiencing (pain in neck & under collarbone, felt like butcher knife was lodged between my right shoulder blade & spine, daily tension headaches which were also on the right side, tingling & numbness down right arm and right hand would sometimes feel cold to the touch). He prescribed Mobic & Flexeril but I'm not a big pill person so I resisted initially. Finally, I couldn't take the pain anymore and tried the meds. Mobic didn't seem to do much but the Flexeril definitely helped the muscle spasms. This was my first clue that the problem seemed more muscular in origin.

This ortho also prescribed physical therapy so I tried about three different rounds of this before going back to see him. Some of the therapies helped, like the heat, massage and stretching. Other parts of PT seemed to hurt more than they helped . . . like the strength exercises and the electro-stim (seemed to aggrevate my already touchy nerves). I had also been researching my symptoms on the internet and came across some TOS sites. I mentioned TOS to the ortho at my next appointment and he agreed the symptoms were a good match but this was out of his league. He referred me to Dr. Meyer @ UAB and after waiting several months for an appointment, Dr Meyer diagnosed me w/TOS in late 2005. He basically told me to 'suck it up as long as I can' before considering surgery.

So after 'sucking it up' for a couple of years . . . just taking hot baths and the occasional muscle relaxer to cope, I started getting migraines at least twice a month. So I went to see a neuro that was a headache specialist and told him about the TOS diagnosis. I felt the migraines were related since they were always right sided as was my TOS. The headaches always started in the occiptial area and ended up feeling like someone was squeezing the back side of my right eyeball. After having this headache for several days, it would eventually turn into a full-blown migraine with auras and vomiting. Neuro thought with better pain control for the TOS that maybe the migraines could be reduced. So I walked out with scripts for Phrenelin Forte (for the daily headaches), Flexeril (for muscle spasms) and Imitrex spray (for the migraines). This combo worked well but the Flexeril made me so sleepy I couldn't take it during the day. I could take the Phrenelin without passing out but it was basically a barbituate/tylenol/caffiene combo and I worried about becoming too dependant if I took it daily.

So maybe a year later, I asked neuro doc if I could try something that would address more of the overall TOS pain and not just the headaches. So he swapped the Phrenelin for Tramadol which worked like a dream for another year or so which brings us almost to present day. About 2 months ago I started on a new project which has been extremely stressful. I think the extra stress has just pushed my TOS pain over the top. I started seeing a chiro again and getting massages every two weeks. The chiro also does trigger point injections so I've had many of those in the occipital, scalene, and rib area. I must say that I'm not a fan of needles, but these injections were like heaven . . . about 2 hrs of pure bliss and no pain. It was kind of shocking to remember what 'normal' feels like but it was a very temporary fix.

So here I am today, going back to the original ortho for a new MRI . . . hoping maybe the discs or bone spurs have gotten worse. Maybe that could explain the increased pain but my gut tells me it's the TOS. I have an appt with him on Monday to review the new MRI but the xray he took in his office last week (where my right collarbone was about 1 inch lower than the left) spoke volumes. I'm petrified about surgery . . . I don't really feel that any of the docs I've seen know enough about the condition to be removing my scalene muscle or chopping off my top rib. But I also can't keep scarfing down pain meds for the rest of my life . . . I'm only 36 but feel like I don't have any good options right now.

Anyway, that's pretty much the end of my story so if you made it this far you're a real trooper. Any advice, encouragement, Dr recommendations in the southeast US would be greatly appreciated. Thanks so much for listening.

[JennyHurts]

Hello to my fellow farmgal... actually, I'd consider myself a "country girl," not quite a farm gal, but close enough, right?

I just got done writing a great response to you, and by the time I sent it, I was signed out and had to sign back in, and then I think it obliterated my response. So, here I go again...

And I'm hurting so bad right now, I have no idea why I'm still typing.

I just wanted to say something like this: I, too, am a victim of "being more stressed and making TOS worse." But, to be truthful, if we really think about it, it's more like, "I'm more busy, and that's taking away from me being able to take care of myself, so I am not keeping my TOS under control." Right? I mean, come on... If we all did all of our exercises and spent our whole lives devoted to posture and cardio, and keeping TOS under control, we'd probably do halfway okay. But, that's totally unrealistic, right? Who the heck has time for that!

And, to be frank, it really is completely unrealistic to think that any of us could devote our entire life to it, anyway. And, we can just breathe the wrong way one day and set this thing off, so it's not like it's really our fault. We really can't avoid it, even if we try.

You're doing everything right. You're making all of the right decisions. You're being cautious with your care. You're asking all the right questions.

By all means, do not let "just anybody" cut you open and attempt to fix this little beast. Read through just a handful of surgical posts on here, and you'll know that it's a terrible idea. (But I think you know that already.)

Anyway, welcome here. Vent away. I came down with this when I was 19 years old - rolled over in bed and went paralyzed. Got dx'd a few years later. I've been on these boards for years, although I took quite a vacation recently. It's informative here, and the people are great supporters, so stick around and stay in touch!

~ jenny

[tshadow]

I don't know what tests you've had but I'll attach my testing experiences.

Also, before you see the doctor, read my neuropatid degeneration. I believe the nervous system works as a whole - although the charts tell us where pain can be, they do not dictate on only area that can be affect when our TOS sets in.

God bless you. We're here.




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.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, and thoracic spine, 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. Why? Because the EMGs weren’t made to detect TOS, but it can rule out TOS. 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 can involve cut-downs along the arm to track blood flow or in an I.V., 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 and C.Ts. give another vision. CTs have very high radiation, and should not be repeated except for good reason. MRAs by Dr. Collins and Dr. Brantigan are considered the best and 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. However, most docs will not look at their reports because the other docs just don’t “see” what the two docs do. (I think the cost at UCLA is $17,000 right now and some insurances cover.) IF you can go, do so, as Dr. Collins explains everything to you. Although I couldn’t get my w/c to do one, Dr. Colling spent an hour with me discussing the TOS issues.

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

With all surgeries for us, RSD can be triggered. My horrific RSD actually went into remission – Dr. Annest thinks that with better circulation the body was able to heal the RSD. But I have to keep taking Ativan to keep my RSD at bay.

We have a ton of articles post on the upper left hand corner. You can hit the button research, to answer most answers, or put in my name tshadow and ask for all of the threads I started to kind of pin down basic symptoms and dealt with changing symptoms also.

There are a couple of “usual” conditions which go hand-in-hand with TOS; they include R.S.D. or C.R.P.S., fibromyalgia and autonomic neuropathy, as well as treatment for depression to handle the differing phases of ones’ life if TOS is determined to be present. Be sure If you are on medication, that you post here to see what side effects we’ve had. I firmly believe that I got diabetes from Cymbalta / Lyrica combined. Plus, no relief…

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." Now I’ve seen 36 doctors plus been worked up by a major hospital and have a pain mgt. doc. NONE had ever seen TOS and did not believe the level of pain, or, “why are you bedridden 90* of your day?”

Pain control is another big fight. YOU MUST have a pain doc. Most of us – not all, but most, are on oxycontin, fentanyl, Opana, Xanax or Atavil

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 leads to more nerve crushing, 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. Dr. Ellis (who refers TOSers out to Edgelow) spoke to me for an hour (as I live so far) and was highly knowledgeable and kind.

Getting a FREE work comp consultation is of the highest importance because if one considers what one does the most, it is usually working. Unless you KNOW your TOS was caused by an accident, or impinging rib that has been bothering you since birth, and if you have a good work history, as you try to figure out how you got TOS, even if you are not yet get diagnosed, you must cover your bases by filing a work comp claim form after a good free consultation. 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.

If you are sick or going to be sick through one year, or more, you should also have a free Social Security atty consult and follow through with those filings as the attorney suggest. It is usually NOT successful to do it yourself.

I also suggest that after six months of absence from work, sending a certified mail receipt requested letter demanding identifications of any / all benefits for anyone disabled fully or partially from your company and to take any response to a licensed disability or insurance attorney.
Copyright 02-08

[tied]

i got my best relief from a pt who taught me nerve glides and got me on my kinesis contour keyboard. hope you can avoid surgery and wish you luck. i am a "town dummy" turned farm girl myself.

[gibbrn]

Hi and welcome....sorry you are here and your story to us is all too familiar!!! We have all gone through pretty similar things.

I had a rib resection and scalenectomy after a work injury gave me TOS. it took over a year for a diagnosis and gettting that I was told go work out you'lll never get any better......so I get it!!!!

you have been given some great advice by the other gals so I won't go on....just remember don'tt be afraid of pills they are there for our help.

as for your migrianes......try botox treatment and get the doctor to do your trigger points as well. It gives me about 2 months with no HUGE migraines...still get headaches but not as bad.........just a thought.

take care and welcome...oh and there are NO STUPID QUESTIONS!!!

Love and hugs,
Victoria

[farmgal]

Thanks for the warm welcome everyone. I appreciate all the tips and advice . . . seems there's always something new to learn about this crazy condition. Also wanted to give you guys an update after more dr appts this week.

I consulted with the ortho doc on Monday about the new MRI. He said there wasn't a significant change from the 2005 MRI so he wouldn't recommend surgery for the cervical issues. He sent me to see another doc in his practice for a new nerve conduction test. Results were normal so no nerve damage yet. This guy also agreed with the TOS diagnosis but thinks I may have the vascular type which is a little scary. I believe he based this on the temp difference between might right and left hands along with my pulse cutting off when right hand was held above shoulder-level for a minute or so. My right hand gets cold and pale but it doesn't turn blue or have any swelling. He said I would have to see a cardiac doc for an angiogram/arteriogram or something like that to know for sure.

We also discussed the treatments I've tried in the past along with my current meds. I told him that I'd been considering surgery because of how much pain I've been in recently even on max doses of my meds. Told him that I really didn't want surgery because I felt it was a last resort and wasn't ready to play that card just yet. So the only thing I haven't tried is taking a break from work and trying to rehab. I have disability insurance through work and he's willing to fill out the necessary paperwork. So my new plan is to take at least a month away from work and do physical therapy 3x per week for the next month. Then I'll go back to the doc and see where we go from there. I'm also on some new meds. Tramadol ER, Baclofen and Soma for breakthru spasms.

Given my new plan, I have some questions for you guys. How many of you saw improvements after taking a break from work? Did PT seem to help or hurt? How many of you have opted for surgery? If you've had surgery would you do it again?

[farmgal]

See below as to what type of testing I've had so far

Originally Posted by tshadow

I don't know what tests you've had but I'll attach my testing experiences.

Also, before you see the doctor, read my neuropatid degeneration. I believe the nervous system works as a whole - although the charts tell us where pain can be, they do not dictate on only area that can be affect when our TOS sets in.

God bless you. We're here.




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.I had a brain MRI when the migraines started to rule out tumors & lesions . . . result was normal. All routine blood work also comes back normal.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, and thoracic spine, 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.Have had two cervical MRIs which came back mostly normal. Just a couple of small bulgy discs around C5/6/7 and bone spurs. Have not had a thoracic MRI or one with fluid.

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.Neck and shoulder xrays are also normal . . . no extra ribs or anything.

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. Why? Because the EMGs weren’t made to detect TOS, but it can rule out TOS. 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.Have had two of these also . . . results normal.

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.Haven't done this yet.

6. MRAs or MRIs with fluid can involve cut-downs along the arm to track blood flow or in an I.V., 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.Haven't done this either.

7. 3d MRAs and C.Ts. give another vision. CTs have very high radiation, and should not be repeated except for good reason. MRAs by Dr. Collins and Dr. Brantigan are considered the best and 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. However, most docs will not look at their reports because the other docs just don’t “see” what the two docs do. (I think the cost at UCLA is $17,000 right now and some insurances cover.) IF you can go, do so, as Dr. Collins explains everything to you. Although I couldn’t get my w/c to do one, Dr. Colling spent an hour with me discussing the TOS issues.Haven't done this either because I'm not sure anyone has this equipment in Bham and if they did I'm not sure I could afford it.

8. Scalene block - if you feel relief for a brief period of time, this is the MOST positive for surgery.Haven't done this yet.

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.Thyroid tests are normal.

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!"

With all surgeries for us, RSD can be triggered. My horrific RSD actually went into remission – Dr. Annest thinks that with better circulation the body was able to heal the RSD. But I have to keep taking Ativan to keep my RSD at bay.

We have a ton of articles post on the upper left hand corner. You can hit the button research, to answer most answers, or put in my name tshadow and ask for all of the threads I started to kind of pin down basic symptoms and dealt with changing symptoms also.

There are a couple of “usual” conditions which go hand-in-hand with TOS; they include R.S.D. or C.R.P.S., fibromyalgia and autonomic neuropathy, as well as treatment for depression to handle the differing phases of ones’ life if TOS is determined to be present. Be sure If you are on medication, that you post here to see what side effects we’ve had. I firmly believe that I got diabetes from Cymbalta / Lyrica combined. Plus, no relief…

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." Now I’ve seen 36 doctors plus been worked up by a major hospital and have a pain mgt. doc. NONE had ever seen TOS and did not believe the level of pain, or, “why are you bedridden 90* of your day?”

Pain control is another big fight. YOU MUST have a pain doc. Most of us – not all, but most, are on oxycontin, fentanyl, Opana, Xanax or Atavil

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 leads to more nerve crushing, 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. Dr. Ellis (who refers TOSers out to Edgelow) spoke to me for an hour (as I live so far) and was highly knowledgeable and kind.

Getting a FREE work comp consultation is of the highest importance because if one considers what one does the most, it is usually working. Unless you KNOW your TOS was caused by an accident, or impinging rib that has been bothering you since birth, and if you have a good work history, as you try to figure out how you got TOS, even if you are not yet get diagnosed, you must cover your bases by filing a work comp claim form after a good free consultation. 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.

If you are sick or going to be sick through one year, or more, you should also have a free Social Security atty consult and follow through with those filings as the attorney suggest. It is usually NOT successful to do it yourself.

I also suggest that after six months of absence from work, sending a certified mail receipt requested letter demanding identifications of any / all benefits for anyone disabled fully or partially from your company and to take any response to a licensed disability or insurance attorney.
Copyright 02-08