[hisbeauty4ashes]

Hi my precious friends.

I had posted several months ago sharing about the five surgeries I have had in the last fifteen months and now I am suffering with TOS.

Well I still have not had an MRI yet, I have been getting the shots in my neck and shoulders it helps for a little bit then the pain comes right back. Well now over the last couple of weeks I keep dropping things like I can not grip something with my fingers. This is kind of getting scary for me. I even had two of my fingers cramp for about two minutes and lock up.

Has anyone experienced this? It is bad enough that any motion with moving my arms causes so much pain in my neck and all around my shoulders and arms.

Any insight or any advice for me would be great.

Jeanie

[(Broken Wings)]

Hi

Sorry you're having all these problems. I remember your posts. You've been through a lot. It does seem to all be connected. I believe my scalenes causes issues with my ear and my shoulder, elbow, wrist and thumb, fingers, and TMJ to a certain degree. When I had Botox to my scalenes, those areas were better for a couple of weeks. Couldn't make my jaw pop.

I've had the fingers and thumbs cramping, and the pad of my thumbs so tender and sore, it was hard to endure and even harder to get any help for my problem. My accident was Oct 2000. So it's been a long time for me. I seen many doctors and described that but no one offered a fix for it. well, time and lots of things, Kinesio Tape, wrist splints with thumb spicas back then was a great relief. Wore those splints from 2001 to probably 2006. Had PT and hot wax to my arms and hands. In the last couple of years I started keeping my arms and hands warm, LED and infrared light treatments.

I've used Biofreeze, BenGay, Lidoderm 5% patches that helped a lot.

In Sept 2007 I had an outpatient procedure where I had an IV in my left had. I wanted to ask the nurse to remove it and put it somewhere else because it was burning and causing old familiar pain but I thought it would be okay as it wasn't going to be in my hand long.

Well, I was wrong. It caused my old symptoms (dragons) to flare. By the next morning my left thumb hurt as bad as it ever did, and my arms... well, I was in a full-blown upper body flare by day 3. And by day 3 my right thumb began locking up, clicking even. I realized at that point this is what the doctors were looking for. I ended up having to have my thumb injected on two different occasions, and that's the limit. next would be outpatient surgical procedure. It's hard to get a provider to believe an IV in my left hand caused a right trigger thumb but it did. Hubby can vouch for that one. If he hadn't been there he wouldn't have believed it either.

I also got a right thumb trigger flare last fall from gardening and canning, but I managed to get it healed with anti-inflammatories and the LED and infrared light treatments. It took a while, but I wanted to avoid the surgery, as I don't tend to get a desired result.

I hope you find relief and it don't get to the "trigger" state.

As far TOS, you'll have to adjust as time and activies allow. There's lots of good info, experiences and tips here. If you need any details just ask me, or PM me. I will share if it helps someone.

Dropping things can also be neck related, TOS too.

Stretching and yoga can help too... and drinking water and vitamins. Take what meds you have to have.

(Broken Wings)

Originally Posted by hisbeauty4ashes

Hi my precious friends.

I had posted several months ago sharing about the five surgeries I have had in the last fifteen months and now I am suffering with TOS.

Well I still have not had an MRI yet, I have been getting the shots in my neck and shoulders it helps for a little bit then the pain comes right back. Well now over the last couple of weeks I keep dropping things like I can not grip something with my fingers. This is kind of getting scary for me. I even had two of my fingers cramp for about two minutes and lock up.

Has anyone experienced this? It is bad enough that any motion with moving my arms causes so much pain in my neck and all around my shoulders and arms.

Any insight or any advice for me would be great.

Jeanie

[hisbeauty4ashes]

Oh broken Wings! I have been having problems with a popping thumb for months now and had no idea they were related. It had gotten so bad that it made my wrist and arm flair up with a burning tingling pain. I did not know it had to do with TOS, I went to physical therapy for the thumb situation and they had to stop treatment because it was not working for my thumb or wrist they wanted to send me to a hand specialist. WOW! am I new to all of this. Yikes!

Yes I am experincing some pretty crazy stuff.

Thanks
Jeanie

Hi

Sorry you're having all these problems. I remember your posts. You've been through a lot. It does seem to all be connected. I believe my scalenes causes issues with my ear and my shoulder, elbow, wrist and thumb, fingers, and TMJ to a certain degree. When I had Botox to my scalenes, those areas were better for a couple of weeks. Couldn't make my jaw pop.

I've had the fingers and thumbs cramping, and the pad of my thumbs so tender and sore, it was hard to endure and even harder to get any help for my problem. My accident was Oct 2000. So it's been a long time for me. I seen many doctors and described that but no one offered a fix for it. well, time and lots of things, Kinesio Tape, wrist splints with thumb spicas back then was a great relief. Wore those splints from 2001 to probably 2006. Had PT and hot wax to my arms and hands. In the last couple of years I started keeping my arms and hands warm, LED and infrared light treatments.

I've used Biofreeze, BenGay, Lidoderm 5% patches that helped a lot.

In Sept 2007 I had an outpatient procedure where I had an IV in my left had. I wanted to ask the nurse to remove it and put it somewhere else because it was burning and causing old familiar pain but I thought it would be okay as it wasn't going to be in my hand long.

Well, I was wrong. It caused my old symptoms (dragons) to flare. By the next morning my left thumb hurt as bad as it ever did, and my arms... well, I was in a full-blown upper body flare by day 3. And by day 3 my right thumb began locking up, clicking even. I realized at that point this is what the doctors were looking for. I ended up having to have my thumb injected on two different occasions, and that's the limit. next would be outpatient surgical procedure. It's hard to get a provider to believe an IV in my left hand caused a right trigger thumb but it did. Hubby can vouch for that one. If he hadn't been there he wouldn't have believed it either.

I also got a right thumb trigger flare last fall from gardening and canning, but I managed to get it healed with anti-inflammatories and the LED and infrared light treatments. It took a while, but I wanted to avoid the surgery, as I don't tend to get a desired result.

I hope you find relief and it don't get to the "trigger" state.

As far TOS, you'll have to adjust as time and activies allow. There's lots of good info, experiences and tips here. If you need any details just ask me, or PM me. I will share if it helps someone.

Dropping things can also be neck related, TOS too.

Stretching and yoga can help too... and drinking water and vitamins. Take what meds you have to have.

(Broken Wings)

[DiMarie]

Originally Posted by hisbeauty4ashes

Hi my precious friends.

I had posted several months ago sharing about the five surgeries I have had in the last fifteen months and now I am suffering with TOS.

Well I still have not had an MRI yet, I have been getting the shots in my neck and shoulders it helps for a little bit then the pain comes right back. Well now over the last couple of weeks I keep dropping things like I can not grip something with my fingers. This is kind of getting scary for me. I even had two of my fingers cramp for about two minutes and lock up.

Has anyone experienced this? It is bad enough that any motion with moving my arms causes so much pain in my neck and all around my shoulders and arms.

Any insight or any advice for me would be great.

Jeanie

Sorry about this progression, it sucks.
One theory is that you have sensory nerves and nerves that operate the muscles. Dr. T explained it as; if you see a candle flame and touch it it burns and the pain signals travel to the brain and say oh, it turns red, is sore and blisters....On the other hand the jerking motion that made your arm and hand draw away from the flame were receiving instantanious signals from brain to hand to pull back. These are the nerves that EMG 's test. The smaller sensory nerves are the first affected but too small to give a positive EMG. When the larger nerves become affected, then the EMG will relate the nerve damage.

That being said, if you have sensory nerve damage your fingers can not feel the weight or touch of a soda can you hold. Unless you are looking at it and your brain seeing it, your hands will not realize it is there and let go.

As too, the motor nerves being affected are not a tight grasp. You are not feeling the tightness, the fingers are now not as strong, and if you go to lift a Milk carton it can slip right out of your hands.
feel better,
Di
PS
I heard using rice bath, dry rice running your hands fingers through can build up the feeling again.

The positionof the locking of your fingers: My dd use to reach for a can of soda, and just stretching a bit too far sets off a spasm. She would have her hands curve, arms to her chest like a shirp woould look, and even her scalense would spasm.

I would have to press on the trigger points of the area above the wings, down the arm near iner fold of elbow, in front of the shoulder, and near the wrist.

If your hands spasm, try some pressure in the wriste area and also the web of the fingers, , into the palm.....work out the inflamation of the nerves.
I have a wax bath. I turn it off to cool a bit, before I put in my hands.

[(Broken Wings)]

Thanks for the info, Di. A better understanding always helps.

I had fludiotherapy in Oct 2000 till oh, I can't remember. That's like the rice thingy. I would stick my whole arm in a hole and it would blow warm rice sized (don't think it was rice) stuff on my arms. Didn't really help, but I was a 9 and 10 on the pain scale, 24/7. So not much helped back then. Glad to be out of that situation. I tried so many things.

When you wax, do you use SaranWrap and a hand towel to get the maximum benefit? PT done that for me.

Hope all is going well with you and the new job.

(Broken Wings)

Originally Posted by DiMarie

Sorry about this progression, it sucks.
One theory is that you have sensory nerves and nerves that operate the muscles. Dr. T explained it as; if you see a candle flame and touch it it burns and the pain signals travel to the brain and say oh, it turns red, is sore and blisters....On the other hand the jerking motion that made your arm and hand draw away from the flame were receiving instantanious signals from brain to hand to pull back. These are the nerves that EMG 's test. The smaller sensory nerves are the first affected but too small to give a positive EMG. When the larger nerves become affected, then the EMG will relate the nerve damage.

That being said, if you have sensory nerve damage your fingers can not feel the weight or touch of a soda can you hold. Unless you are looking at it and your brain seeing it, your hands will not realize it is there and let go.

As too, the motor nerves being affected are not a tight grasp. You are not feeling the tightness, the fingers are now not as strong, and if you go to lift a Milk carton it can slip right out of your hands.
feel better,
Di
PS
I heard using rice bath, dry rice running your hands fingers through can build up the feeling again.

The positionof the locking of your fingers: My dd use to reach for a can of soda, and just stretching a bit too far sets off a spasm. She would have her hands curve, arms to her chest like a shirp woould look, and even her scalense would spasm.

I would have to press on the trigger points of the area above the wings, down the arm near iner fold of elbow, in front of the shoulder, and near the wrist.

If your hands spasm, try some pressure in the wriste area and also the web of the fingers, , into the palm.....work out the inflamation of the nerves.
I have a wax bath. I turn it off to cool a bit, before I put in my hands.

[(Broken Wings)]

Yeah, it is crazy stuff, all right, and only my TOSer friends understands.

Let me clarify/explain myself a little more. I've had these injuries since Oct 2000. Been through a lot because of it, tests, doctors/experts, familyand friends, and work don't really depict nor appreciate the extent of my suffering with TOS and co-related diagnoses, treatments and failures and the disappointments I have endured. It has not been fun.

The history of my right thumb turning to a trigger state after an IV in my left hand is hard for the medical community to swallow. It happened just that way, so I know how crazy it gets. I told my sister who is a nurse, and she said "No way that could happen that way," meaning from one side to the other. I told my doctor friend and he just looked at me and grinned and said, "You already had problems and it just got worse." At that time, my thumbs weren't an issue, at all. Maybe a 2, if anything.

So when I got an appointment and got to the specialist in Louisville, they asked me, "What happened?" I said, "I woke up and it was hurting real bad and now it's doing this." The substitute hand specialist - because my specialist was out for his own back surgery - asked "For how long have you had this?" My answer was: "FOR A WHILE." It had actually been 5 1/2 months. (because of ins deductible-long story) He injected my thumb. it help for about a week.

So then I had to schedule another visit down there when my doc came back, April 15th. Thumb in a very painful, trigging state. He is always worth the distance. He injected it, hurt like hell, but lasted (until garden work got it exacerbated-under control now). I could tell the difference in the two doctors. so the doctor you chose makes a difference.

Dr. A asked the same what and how long and got the same answers. He chuckled and grinned, cause he knew he didn't have time for that story and the fix would be the same. I'm guarding my dignity at this point. If the few medical professionals I told didn't believe it could happen that way, then I'm not putting it out there, on record, so to speak.

So I never got it from the doctor that it was or was not related to TOS and/or scalenes. That's just my take on it. I say it's all connected and is related to my auto accident.

Two thumb injections is the limit. any more you risk an irrepairable tendon spilt and/or tears. By the way, the last injection has helped my upper body and arms too. Don't be afraid of the needles. They do help a lot, most of the time. Thumb splinting is okay, but not for the long haul, causes weakness.

PT did little to help my hands and thumbs. They tried and might have gained some, but not to a great degree. Not using them, allowing them to heal after the 2nd injection did help.

I pray you find relief. If you want to know anything in detail, just ask.

Originally Posted by hisbeauty4ashes

Oh broken Wings! I have been having problems with a popping thumb for months now and had no idea they were related. It had gotten so bad that it made my wrist and arm flair up with a burning tingling pain. I did not know it had to do with TOS, I went to physical therapy for the thumb situation and they had to stop treatment because it was not working for my thumb or wrist they wanted to send me to a hand specialist. WOW! am I new to all of this. Yikes!

Yes I am experincing some pretty crazy stuff.

Thanks
Jeanie



Hi

Sorry you're having all these problems. I remember your posts. You've been through a lot. It does seem to all be connected. I believe my scalenes causes issues with my ear and my shoulder, elbow, wrist and thumb, fingers, and TMJ to a certain degree. When I had Botox to my scalenes, those areas were better for a couple of weeks. Couldn't make my jaw pop.

I've had the fingers and thumbs cramping, and the pad of my thumbs so tender and sore, it was hard to endure and even harder to get any help for my problem. My accident was Oct 2000. So it's been a long time for me. I seen many doctors and described that but no one offered a fix for it. well, time and lots of things, Kinesio Tape, wrist splints with thumb spicas back then was a great relief. Wore those splints from 2001 to probably 2006. Had PT and hot wax to my arms and hands. In the last couple of years I started keeping my arms and hands warm, LED and infrared light treatments.

I've used Biofreeze, BenGay, Lidoderm 5% patches that helped a lot.

In Sept 2007 I had an outpatient procedure where I had an IV in my left had. I wanted to ask the nurse to remove it and put it somewhere else because it was burning and causing old familiar pain but I thought it would be okay as it wasn't going to be in my hand long.

Well, I was wrong. It caused my old symptoms (dragons) to flare. By the next morning my left thumb hurt as bad as it ever did, and my arms... well, I was in a full-blown upper body flare by day 3. And by day 3 my right thumb began locking up, clicking even. I realized at that point this is what the doctors were looking for. I ended up having to have my thumb injected on two different occasions, and that's the limit. next would be outpatient surgical procedure. It's hard to get a provider to believe an IV in my left hand caused a right trigger thumb but it did. Hubby can vouch for that one. If he hadn't been there he wouldn't have believed it either.

I also got a right thumb trigger flare last fall from gardening and canning, but I managed to get it healed with anti-inflammatories and the LED and infrared light treatments. It took a while, but I wanted to avoid the surgery, as I don't tend to get a desired result.

I hope you find relief and it don't get to the "trigger" state.

As far TOS, you'll have to adjust as time and activies allow. There's lots of good info, experiences and tips here. If you need any details just ask me, or PM me. I will share if it helps someone.

Dropping things can also be neck related, TOS too.

Stretching and yoga can help too... and drinking water and vitamins. Take what meds you have to have.

(Broken Wings)

[/QUOTE]

[tshadow]

[QUOTE=hisbeauty4ashes;508099]Hi my precious friends.

I had posted several months ago sharing about the five surgeries I have had in the last fifteen months and now I am suffering with TOS.

Well I still have not had an MRI yet, I have been getting the shots in my neck and shoulders it helps for a little bit then the pain comes right back. Well now over the last couple of weeks I keep dropping things like I can not grip something with my fingers. This is kind of getting scary for me. I even had two of my fingers cramp for about two minutes and lock up.

Has anyone experienced this? It is bad enough that any motion with moving my arms causes so much pain in my neck and all around my shoulders and arms.

Any insight or any advice for me would be great.

Yes, this sounds like the beginnings of the TOS experience. I will post about the testing that we need to get.

If you don't get all of the testing, then you can't really be sure you have TOS.

[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.

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 0

[hisbeauty4ashes]

Thank you all for your insights.

I have had only some tests done and it all points to TOS. I have another question though.

I had a total of three neck surgeries. My first neck surgery they went through the front of my neck to fuse four disc's. Well only two disc's fused, so they went in from the back of my neck to fuse the other two, well then the rods and pins they put in some how bent so then they had to go in again and remove them. Well now I hurt worse then I did with the disc's herniated. I also have another disc bulged on top of the four that are fused. My question is can TOS start because of scar tissue from all the surgeries I have had? I wish i never had any of the surgeries but I was in soooo much pain.


Thanks for all your help.

Jeanie

[tied]

before my tos diag, i was diag with bilateral carpal tunnel r>l and at that time i was dropping things. what turned it around for me was my pt teaching me nerve glides, doing a lot of exercises in the water, and basically not having a life with having to do all the homework you get with pt.

i realize what works for me may not work for everybody, just wanted to share.

another thing that really helped was not working nights. my situation turned around big time when i started sleeping again. although i still have insomnia, this is a matter of degree. i sleep 5 hrs a night now but back then only between 30 minutes and 2 hrs a night. so it is no wonder i had carpal tunnel, since the muscles heal up at night from the abuse we given them during the day.