[fern]

I haven't been here for serveral months and hope everyone is doing well.

I woke up with a terrible flare 2.5 weeks ago. It was new to me in that there was a very painful pull from my armpit to my little fingers and another one from my deltoid? to my little fingers on the other side of my same arm. Also there was a more usual pain in my neck and pull from under my ear to the clavicle and the usual stabbing shoulder blade pain. It hurt to breathe more than a shallow breath and activities like sitting or even sleeping made it worse. ONly a little supported walking helped. This pain was a constant 8-9 at first and now thankfully is more intermittent and less severe.

My question is about dystonia. I saw Oprah today and there was a wmn on the show along w/Michael J Fox who suffers from dystonia. Her body was severely pulled to one side. Her pain seemed similar to that kind of muscle pain I get in that seems like a constant tugging once it gets started. I know that w/TOS we get hypertrophic muscles. Is dystonia related to the usual TOS pains? I remember a lot of talk about focal dystonia when the famous pianist had releif after many yrs of suffering but not much since then. The wmn on Oprah was getting quarterly Botox at USC.

btw-my PT feels that it's a case of fascial restriction that was caused by a fallout of getting my spine in better alignment, causing the shortened fascia to pull for a few weeks until new cells can create more length in the fascial train. The flare does seems to be lessening on it's own but I've never had that severe pull from the armpit before and am wondering if there's something I can do. I've completed my PT for awhile due to an upcoming surgery and I had a new MRI of my Cspine yesterday to make sure it's not radiculopathy (which I did have some years back prior to C-spine surgery - and it doesn't feel the same). The docs here in my town don't know much about TOS so I'm looking for some input from you smart folks here. My goal is to be able to sit and lie w/o flare for surgery and recovery. I hope to be w/o flare or I will postpone surgery.

thanks for your suggestions.

[tshadow]

When I was in Dr. Larry Miller's office, a lady came in with her head flat to her shoulder and couldn't move it. She was in terrible pain. Doc gave her a nerve block and straightened her out. I asked what she had, and she said "TOS." My daughter and I shared a frightened look.

[(Broken Wings)]

I'm sorry you're having these difficulties

yes, I had armpit pain for years. I used 3" balloons in my armpit to get some relief. I felt the tugging as you're describing, yes from the armpit to the fingertips bilaterally and from the right clavical to the ear and face involvement, with numbness. No fun

Therapist does myofascial release and it has helped over the years. Another strange thing though, it made it flare up after therapy too. Three days of hell afterwards.

Yoga helped stretch that out too.

And another tender place was the inner arm (between the belly of the tricep and bicep) and straight across to my breast. Man, that really hurt and no one has ever explained why or where that pain came from.

It is a good thought to postpone surgery if you're in a flare. Listen to your body. I had an outpatient surgical procedure on my ear, stapedectomy -- me and surgeon both now know that a lot of my problem was from TOS and cervical bulges and herniations and I really didn't need a stap at that time. Afterwards he has said that to me. But because of my back and TOS I was really miserable and actually caused me to have not too good of a result. Well, I thought I was deaf in that ear. I probably need to let them go back in but I'm not willing to trust that I'll be taken care of or it will be fixed.

I gave my history, but didn't think about needing to stop meds the night and morning before surgery. Made a big difference in my pain level. Then laying in a hospital bed for hours before surgery, well, not a good thing with my back.

Really, what happened, I was getting really uncomfortable and about to come up out of the bed and go home (I was in Memphis-8hrs away) when the anesthesologist came up to me - introduced himself. Such a nice guy. he seen I was in pain and I told him I had not taken my meds and that laying down flat -- which is what the surgeon wanted me to do -- is not a good thing from my back. Well, the nice anesthesologist said, "For most people we reverse it, but for you, I'll let it run." I said, "Oh, thank you kind sir." Well, I'm not used to heavy meds so I woke up and I was puking my guts out for the rest of the day. Well, needless to say, or the way I've got it figured out, I couldn't hear very well because of the straining that happened. must have caused stap (prosthetic) to move some. The surgeon says everything looks great from what he can tell and my tests are all good now. It took a year to get that good result.

You'll have to make that decision because they don't understand your body. TOS makes everything complicated.

Originally Posted by fern

I haven't been here for serveral months and hope everyone is doing well.

I woke up with a terrible flare 2.5 weeks ago. It was new to me in that there was a very painful pull from my armpit to my little fingers and another one from my deltoid? to my little fingers on the other side of my same arm. Also there was a more usual pain in my neck and pull from under my ear to the clavicle and the usual stabbing shoulder blade pain. It hurt to breathe more than a shallow breath and activities like sitting or even sleeping made it worse. ONly a little supported walking helped. This pain was a constant 8-9 at first and now thankfully is more intermittent and less severe.

My question is about dystonia. I saw Oprah today and there was a wmn on the show along w/Michael J Fox who suffers from dystonia. Her body was severely pulled to one side. Her pain seemed similar to that kind of muscle pain I get in that seems like a constant tugging once it gets started. I know that w/TOS we get hypertrophic muscles. Is dystonia related to the usual TOS pains? I remember a lot of talk about focal dystonia when the famous pianist had releif after many yrs of suffering but not much since then. The wmn on Oprah was getting quarterly Botox at USC.

btw-my PT feels that it's a case of fascial restriction that was caused by a fallout of getting my spine in better alignment, causing the shortened fascia to pull for a few weeks until new cells can create more length in the fascial train. The flare does seems to be lessening on it's own but I've never had that severe pull from the armpit before and am wondering if there's something I can do. I've completed my PT for awhile due to an upcoming surgery and I had a new MRI of my Cspine yesterday to make sure it's not radiculopathy (which I did have some years back prior to C-spine surgery - and it doesn't feel the same). The docs here in my town don't know much about TOS so I'm looking for some input from you smart folks here. My goal is to be able to sit and lie w/o flare for surgery and recovery. I hope to be w/o flare or I will postpone surgery.

thanks for your suggestions.

[fern]

well...I had a new MRI and found that now I have a few neighboring discs/joints that are now problematic. The bottom one is C7-T1 so of course the ordering doctor assumes my pain is this and not TOS. But I have the cold hand, the armpit pain, and many others that to me seem like TOS.

Have other TOSers had issues with this C7-T1 joint and have been able to distinguish what the pain is? This pain doctor recommends a course in epidurals but I want to avoid such injections as I feel I've had my life's max. Now I have issues from C3 through T1 and want to avoid any more spine surgery if possible.

cheers and thx for reading as always. have a good day.

BW-thx for your response and good ideas. I am going ahead with the surgery as I am less flared - although still in pain.

[(Broken Wings)]

WITHOUT AN EVENT FOR THE NEW CHANGES, IT MAY BE A WORSENING IN YOUR DETERIORATING SPINAL ISSUES, AND TOS MAY HAVE KEPT YOU FROM STRENGTHENING, OR PROLONGED POOR POSTURE TAKES IT TOLL, PLUS TIME HAS PASSED AND SOMETIMES THE AGING PROCESS BECOMES ACCELERATATED BY INSULTS TO THE AREA, PUTTING IT MILDLY. HARD WORK AND GENETICS, SMOKING, MANY THINGS COULD CAUSE THE C7-T1 PROBLEM.

YES, NEIGHBORING DISC PROBLEMS ARE A CONCERN FOR PEOPLE WITH BACK TROUBLE, AND EVEN POST SURGERY THIS WILL HAPPEN.

WHAT TYPE OF PROBLEM? BULGE? HERNIATION?

I SWEAR BY THE EPIDURALS, FOR ME. BUT YOU SAID YOU FEEL YOU'VE MAXED OUT AT THIS TIME. I'D LISTEN TO MY BODY IF I WERE YOU. JUST DON'T LET FEAR AND ANXIETY RULE YOUR THOUGHTS HERE. ENTERTAIN IT AS AN OPTION AND WEIGH THE BENEFITS AND THE RISKS.

THERE'S OTHER THINGS TO TRY. DON'T KNOW WHAT ALL YOU'VE TRIED. PM ME IF YOU LIKE.

DID THE DOC TELL YOU "ALL" OR "MOST" OF YOUR SYMPTOMS ARE SPINAL RELATED? YOU CAN HAVE MORE THAN ONE CAUSE FOR YOUR OVERALL HEALTH PICTURE AND BECOME COMPLICATED TO TREAT?

I'VE TAKEN MY VISITS WITH A GRAIN OF SALT, PICKING UP LITTLE MORSELS THAT HELP ME ALONG THE WAY. I JUST HATE THE VISITS THAT HAVE CAUSED ME GRIEF FOR THE WAY I WAS TREATED BY SOME PROFESSIONALS.

I HAVE WRITTEN THINGS DOWN SO I WON'T FORGET. GIVES THE DOCTOR NOTICE THAT I CAN READ AND WRITE TOO.

IT'S HARD TO FIND THE HELP THAT'S RIGHT FOR YOU. KEEP LOOKING IF YOU CAN, AND GIVE IT A LITTLE TIME TO HEAL. JUST UNDERSTAND THAT IT'S NOT A PICNIC. I'M SORRY THAT YOU'RE SUFFERING, ALONG WITH THE REST OF US.

Originally Posted by fern

well...I had a new MRI and found that now I have a few neighboring discs/joints that are now problematic. The bottom one is C7-T1 so of course the ordering doctor assumes my pain is this and not TOS. But I have the cold hand, the armpit pain, and many others that to me seem like TOS.

Have other TOSers had issues with this C7-T1 joint and have been able to distinguish what the pain is? This pain doctor recommends a course in epidurals but I want to avoid such injections as I feel I've had my life's max. Now I have issues from C3 through T1 and want to avoid any more spine surgery if possible.

cheers and thx for reading as always. have a good day.

BW-thx for your response and good ideas. I am going ahead with the surgery as I am less flared - although still in pain.

[tshadow]

Wouldn't the scalene block nerve test prove the difference between TOS and a spinal disc issue? I believe it would - but you'd have to ask a neuro who specializes in studying C-8 nerves, scalene blocks and the difference with spinal bulges or deterioration issues.

I know my cervical discs have abnormalities. Most adults' c spines do, but do not have any pain or problems.

TOS is so hard to identify because it does mimic some spine issues, so that's why we have to do all of the tests and then sit back and make the ultimate determinations. For me, Dr. Annest read the tests I had done, did some more, and then concluded TOS. (He was right.)

[tied]

after my 1991 mva i had a constant tug from my neck to my mouth. this caused a drooling problem. sometimes it was accompanied by charlie horses in the chin.

over the years it has healed somewhat but i still drool into the pillow at night.

i agree that yoga has some excellent stretches. i wish i had been doing it for longer, because i have noticable improvement on so many different areas and levels.

[(Broken Wings)]

Originally Posted by tied

after my 1991 mva i had a constant tug from my neck to my mouth. this caused a drooling problem. sometimes it was accompanied by charlie horses in the chin.

over the years it has healed somewhat but i still drool into the pillow at night.

i agree that yoga has some excellent stretches. i wish i had been doing it for longer, because i have noticable improvement on so many different areas and levels.

My physical therapist would work on the outside and inside of your mouth, back as far as it takes, your jaw to the back of your neck, and no doubt scalp and shoulders, as far as she needed to go. A combination of trigger point and myofascial release and light pressure massage. She puts the gloves on for that kind of work. She's a great therapist.

Yoga helped me get over the hump too. I had to get a chair to hold on to for any balancing type stuff. She also would prop my arms up and assist in other ways. She's said I've improved so much since I start ed. That was about a year ago. Our Yoga instructor had to reduce her workload. It's not as fun by yourself. I catch some good yoga stretches on TV about 5:00 in the morning sometimes. If you pick up a few poses that helps, it's worth it.

I have a pull to the right side of my face and if I don't take my muscle relaxers, I can tell by my mouth that I need them. I hope you improve.

[fern]

I'm at 2 weeks post-op now and glad that I got a lot less flared this time than from the orig surgery last yr. I'm still feeling the new C7-T1 and TOS problem and am trying to figure out what to do about that. In the meantime I am taking the best care of myself that I can.

as tshadow asked, i had the scalene blocks from dr Sanders and yes, i do have the pec minor problem in addition to both TOS and cervical spine issues. I saw my chiro yesterday and she said that the 2 new levels are probably the domino effect since they neighbor above and below my already compromised cervical spine.

BW-balloons sound like a good idea; what do you do with them? I have the green balls with the "Miracle Ball Method" Petrone book and that is helpful. the fascial pulls that both BW and tied describe are similar to ones I have eliminated with the current P.T. who does the mix of lymph drainage along w/myofascial and cranial sacral.

"DID THE DOC TELL YOU "ALL" OR "MOST" OF YOUR SYMPTOMS ARE SPINAL RELATED? YOU CAN HAVE MORE THAN ONE CAUSE FOR YOUR OVERALL HEALTH PICTURE AND BECOME COMPLICATED TO TREAT?" by BW
BW-the doc i saw doesn't know anything about TOS so his assesment doesn't mean much to me. He seemed delighted to find something other than TOS to blame my newest problem on. But developing a new problem doesn't mean that the TOS miraculously vanished. At least that's not what the venograms nor the 3D-MRI show. I won't be going back to him to say the least. He basically wanted to treat me w/opiods and injections.

I still want to find a doctor who can assess the current difference btwn the spine and the TOS. when you say "neuro" tshadow, are you meaning neuro surgeon or neurologist?

wishing everyone a pain free as possible beautiful day today.
fern

[(Broken Wings)]

Bless your heart. I pray you recover Godspeed.

I would get 3" balloons and blow them up and place them in my armpit. It seemed to open up that area and give me tremendous relief. I felt that when I was upright, walking or standing, helped me the most. I also used the balloons for the back of my neck. I used larger balloons for my back and the front of my neck. Letting my chin rest on it when I would recline seemed to give me relief. I would keep a cheap supply in my autos. Came in handy so many times.

I love the Miracle Balls. They're great for the back of the neck too. A little hard for my armpits tough.

Stretaches helped. Rolling a towel up and placing it up and down my spine, while lying on my back in the bed, and doing arm exercises helped too. I would do that after a shower.

I'm not the best at explaining details. If I'm not clear, just ask me to explain a little better.

I hear physiatrists (doctor of physical medicine) are good for multi problems. They concentrate on your physical abilities and disabilities, using your physical abilities to recover.

Hang in there. That's two weeks behind you now.
(Broken Wings)

Originally Posted by fern

I'm at 2 weeks post-op now and glad that I got a lot less flared this time than from the orig surgery last yr. I'm still feeling the new C7-T1 and TOS problem and am trying to figure out what to do about that. In the meantime I am taking the best care of myself that I can.

as tshadow asked, i had the scalene blocks from dr Sanders and yes, i do have the pec minor problem in addition to both TOS and cervical spine issues. I saw my chiro yesterday and she said that the 2 new levels are probably the domino effect since they neighbor above and below my already compromised cervical spine.

BW-balloons sound like a good idea; what do you do with them? I have the green balls with the "Miracle Ball Method" Petrone book and that is helpful. the fascial pulls that both BW and tied describe are similar to ones I have eliminated with the current P.T. who does the mix of lymph drainage along w/myofascial and cranial sacral.

"DID THE DOC TELL YOU "ALL" OR "MOST" OF YOUR SYMPTOMS ARE SPINAL RELATED? YOU CAN HAVE MORE THAN ONE CAUSE FOR YOUR OVERALL HEALTH PICTURE AND BECOME COMPLICATED TO TREAT?" by BW
BW-the doc i saw doesn't know anything about TOS so his assesment doesn't mean much to me. He seemed delighted to find something other than TOS to blame my newest problem on. But developing a new problem doesn't mean that the TOS miraculously vanished. At least that's not what the venograms nor the 3D-MRI show. I won't be going back to him to say the least. He basically wanted to treat me w/opiods and injections.

I still want to find a doctor who can assess the current difference btwn the spine and the TOS. when you say "neuro" tshadow, are you meaning neuro surgeon or neurologist?

wishing everyone a pain free as possible beautiful day today.
fern