[Hanna1]

Dear members of this wonderful forum,

since we do not have such a wonderful forum here in Germany that deals so extensively with my desease - thoracic outlet syndrome - I was desperately searching the internet for some help.

I am totally overwhelmed to find so many nice and compassionate people here, it is incredible and already makes you feel a bit better.

I hope that my English is good enough to explain what I have experienced.

Well,now a bit about me. I am 50 years old, married for 22 years and we have to boys (17 and 14).

I have hashimoto desease and myofascial pain for about 20 years now. About 18 months ago I felt that my left shoulder and neck were tightening up more and more and six months later I decided to go to my orthopedist. He just told me that my shoulder was fine and that I should see a physio. Well I saw about three different physiotherapists and the neck and shoulder problem got more severe. I have developped horrible neck pains that overwhelmed me in waves and the doctor had no answer to all that. After each physio it got worse. He sent me to an MRT/MRI (?) and they could not see anything.

Then I started my own research and I always told him that it felt like something was squeezed in my neck above the collar bone and that there were tests to check this. Well, his anwer was that there were a lot of tests out there and a doctor could not know everything.

Then I went to another doctor and I told him I thought I had a scalenus syndrome. He finally sent me to a neurologist who again sent me to have another MRT, this time with elevated arms. Now you could see that the subclavian artery was squeezed and flattened. He also made a nerve testing. Now at last I had a diagnosis and understood why I have these terrible pains at the side of my neck.

On the one hand I am still lucky because my arm feels fine, no problems, only sometimes the arm gets numb at night when being positioned the wrong way or both arms get numb, painful and tingling when I wash my hair or do other things overhead.

I am going to another physio at the moment who is very gentle, doing ostheopathy and craniosacral therapy. Next week I will get trigger point shock waves. I always put all my hope into new therapies but I fear the negative results.

One thing that is very strange - and maybe you know what this can be - is that I feel quite fine when being on the physio's treatment couch (?) but as soon as I stand up after the treatment almost instantly the muscles in the neck and shoulder tighten up and cramp and "my" pain comes in its usual waves. The physio does not know what this is and neither do I.

Well, I hope that my introduction was not too long . I am so glad to have found you because sometimes when the pain is so strong I am very, very devastated and nobody seems to understand. The thoracic outlet syndrome is quite rare here and the neurologist's and the orthopedist's first question was if I would not want to have surgery. Oh my god, never ever. Now my arm is still fine but I have heard that people often have signs of paralysis after such operations and to be honest, who wants to get rid of his first rib right away.

I read about the selfcare program by Sharon Butler and would appreciate if you told me of your experiences.

Thank you for taking all your efforts and time for this wonderful forum.

[Abbie]

Hallo Hanna and WILLKOMMEN to NeuroTalk!

Your English is very good! Much better than my German... which is very basic at best.

Here are a couple of links to help you find your way around our board.

Thoracic Outlet Syndrome
http://neurotalk.psychcentral.com/forum24.html

Autoimmune Diseases
http://neurotalk.psychcentral.com/forum44.html

Please feel free to kick off your shoes and stay a while... You are welcome to roam around all of the forums and join in anywhere!

If you have any questions or need any assistance, please don't hesitate to ask. Someone will always be around shortly to help in any way that we can...

I hope to see you around the board.

Abbie

[MelodyL]

Hello Hanna1

My name is Melody and I wanted to welcome you to Neurotalks. Someone will come along and direct you to the proper forum. We are a nice caring bunch of folks and you will find some answers here.

And your English is perfect.

Take care

Melody

[Hanna1]

Thank you so much for your warm welcome. I am glad that my English - at least something - is fine. I was born in Canada and left when I was about three years old. Until then I have lived here in Germany.

I have also posted my introduction in the "Thoracic Outlet Syndrome-Forum". It feels so good not to be alone.

Thank you all for your kindness and comfort.

Kind regards

Monica (my real name)

Your English, dear Monica, greatly exceeds my German (which stretches all the way from danke to Gesundheit). It is lovely, expressive, clear.

I found this Forum several weeks ago & know exactly what you mean about it felling so good not to be alone. That's one very special thing about the people here: They will let you come & be here with them no matter how you feel. You can ask questions, hang out & just listen, throw a fit out of frustration, whatever. People here are always here for you.

In your earlier post, you said: "One thing that is very strange - and maybe you know what this can be - is that I feel quite fine when being on the physio's treatment couch (?) but as soon as I stand up after the treatment almost instantly the muscles in the neck and shoulder tighten up and cramp and 'my' pain comes in its usual waves. The physio does not know what this is and neither do I."

Just a thought: Maybe you are standing up too soon.

When I have deep-muscle massage (which can break up blockages in energy flow) or acupuncture (which channels energy flow), I will often feel stabbing pain, nausea, &/or blackouts if I don't give my body at least 5 mins (sometimes I need as much as 20) to regulate or adjust to this new energy pattern. I don't know whether there are any parallels with your treatments, but you might give this a try if you are getting up right away.

Best wishes.

[Hanna1]

Thanks for your dear replies. You are such a nice folk.. When reading Broken Wing's post I felt like being in an old movie which we sometimes see about the old times in the US. Sounds wonderful, this country scenery.

Yes, hair-drying is not so painless as it should be. For me it is also very painful to do such simple things like peeling potatos when standing in front of the sink. Ouch!

JudeLauren, it is interesting what you said about the pain after the physio. The problem is that you usually do not have enough time to relax after the treatment because the next patient is waiting. But I'll tell her tomorrow about that.

For me, at the moment, the most terrible thing is the mental picture in my hand that I will never ever be able to move and behave like a healthy 50-year old woman. This totally knocks me off. I'm sitting here in front of this computer and the pain starts creeping and swelling at my neck and behind my ear and I think that this must be somebody else's nightmare.

Due to the Hashimoto desease I have already pain in all of my muscles and am often tired. I am used to that but the TOS is too much. I hate people who complain all day long about their - not serious - ailments but then I find myself standing in the kitchen and the tears start running down my face. I feel so inadequate as a mother who is always tired and a wife who walks around with an arm hanging around as being paralyzed for fear that the pain comes again when moving normally. I always think that I could damage muscles, the plexus or I don't know what when using the arm and the muscles like a healthy human being.

When I will have finished the physio - still two times to go - then I will start the Sharon Butler self-care program. I - again - put all my hopes into that.

Well, now I'll go picking up our son who is doing a combat sport. I always tell him: Dear son, do not walk around like your mother, your head forward and your poor back bent . You will end up like me. He grumbles then but straightens up his head.

Dear new friends, I wish you all the best for a good night, no pain, no bad thoughts.

Monica

[(Broken Wings)]

Wishing you the same...

Originally Posted by Hanna1

Thanks for your dear replies. You are such a nice folk.. When reading Broken Wing's post I felt like being in an old movie which we sometimes see about the old times in the US. Sounds wonderful, this country scenery.

Yes, hair-drying is not so painless as it should be. For me it is also very painful to do such simple things like peeling potatos when standing in front of the sink. Ouch!

JudeLauren, it is interesting what you said about the pain after the physio. The problem is that you usually do not have enough time to relax after the treatment because the next patient is waiting. But I'll tell her tomorrow about that.

For me, at the moment, the most terrible thing is the mental picture in my hand that I will never ever be able to move and behave like a healthy 50-year old woman. This totally knocks me off. I'm sitting here in front of this computer and the pain starts creeping and swelling at my neck and behind my ear and I think that this must be somebody else's nightmare.

Due to the Hashimoto desease I have already pain in all of my muscles and am often tired. I am used to that but the TOS is too much. I hate people who complain all day long about their - not serious - ailments but then I find myself standing in the kitchen and the tears start running down my face. I feel so inadequate as a mother who is always tired and a wife who walks around with an arm hanging around as being paralyzed for fear that the pain comes again when moving normally. I always think that I could damage muscles, the plexus or I don't know what when using the arm and the muscles like a healthy human being.

When I will have finished the physio - still two times to go - then I will start the Sharon Butler self-care program. I - again - put all my hopes into that.

Well, now I'll go picking up our son who is doing a combat sport. I always tell him: Dear son, do not walk around like your mother, your head forward and your poor back bent . You will end up like me. He grumbles then but straightens up his head.

Dear new friends, I wish you all the best for a good night, no pain, no bad thoughts.

Monica

Originally Posted by Hanna1

JudeLauren, it is interesting what you said about the pain after the physio. The problem is that you usually do not have enough time to relax after the treatment because the next patient is waiting. But I'll tell her tomorrow about that.

Perhaps you could find somewhere close to lie down--an unused phisio's couch, or even bring a sleeping bag & find a quiet corner. As a last resort, simply move to a chair & remain quiet. If you move slowly, you can maintain the energy state of the muscles. Try also to keep your mind quiet.

For me, at the moment, the most terrible thing is the mental picture in my hand that I will never ever be able to move and behave like a healthy 50-year old woman. This totally knocks me off. I'm sitting here in front of this computer and the pain starts creeping and swelling at my neck and behind my ear and I think that this must be somebody else's nightmare.
Due to the Hashimoto desease I have already pain in all of my muscles and am often tired. I am used to that but the TOS is too much. I hate people who complain all day long about their - not serious - ailments but then I find myself standing in the kitchen and the tears start running down my face. I feel so inadequate as a mother who is always tired and a wife who walks around with an arm hanging around as being paralyzed for fear that the pain comes again when moving normally. I always think that I could damage muscles, the plexus or I don't know what when using the arm and the muscles like a healthy human being.

When my mom died in 1991, we discovered that my dad was in mid-stage Alzheimer's, just as we'd suspected. Their doctor had lied about the neurologist's findings. I moved back to be with him. A decade later, my cholesterol soared; I started taking large doses of statins & niacin. Within 3 wks, I was reporting arthritis everywhere. It was side effects from the drugs. Soon all my muscles began to feel bruised. Over the years, the statin dose has increased (I'm genetically predisposed for high cholesterol.) So has the pain. The worst of it is that my sleep is interrupted by the pain, waking me every hour & a half or two hours. Over the course of 10 or so hrs, I try to put together 5 to 6 hrs of naps & call it a night's rest.

I'm telling you this loooong saga (sorry) not because my story's the same as yours but because there's a parallel. When my troubles started I was 45, & I mourned my lost future. I was full of fear for all the loss I would encounter.

Okay, now I'm 65, & I missed out on a lot because I was afraid to go for it. I spent too much time mourning what I couldn't do. But I have a best friend who kept dragging me along with her, doing things we'd always done, reminding me of what I could still do with a little effort, planning--& her help. I've had to accept that, sometimes, I need to ask for help. & that's okay.

So what I want you to know is that neither your present nor your future is sealed. Ask questions, keep asking questions, till you really understand your condition & all your options.

And try not to mourn now. Don't assume the battle's over (& lost).

Stop by anytime for hugs, to talk, to get whatever you need.

[(Broken Wings)]

Hi, my new bff

We have so much in common.

Just take your time.

A hairdryer on a stand is a must.

You don't have to worry so much about your typing and English skills. We understand. Don't waste finger power correcting if you dont feel like it. We usually get it, you know...

There's lots of helpful hints here.

See you around the board.

Originally Posted by Hanna1

Dear members of this wonderful forum,

since we do not have such a wonderful forum here in Germany that deals so extensively with my desease - thoracic outlet syndrome - I was desperately searching the internet for some help.

I am totally overwhelmed to find so many nice and compassionate people here, it is incredible and already makes you feel a bit better.

I hope that my English is good enough to explain what I have experienced.

Well,now a bit about me. I am 50 years old, married for 22 years and we have to boys (17 and 14).

I have hashimoto desease and myofascial pain for about 20 years now. About 18 months ago I felt that my left shoulder and neck were tightening up more and more and six months later I decided to go to my orthopedist. He just told me that my shoulder was fine and that I should see a physio. Well I saw about three different physiotherapists and the neck and shoulder problem got more severe. I have developped horrible neck pains that overwhelmed me in waves and the doctor had no answer to all that. After each physio it got worse. He sent me to an MRT/MRI (?) and they could not see anything.

Then I started my own research and I always told him that it felt like something was squeezed in my neck above the collar bone and that there were tests to check this. Well, his anwer was that there were a lot of tests out there and a doctor could not know everything.

Then I went to another doctor and I told him I thought I had a scalenus syndrome. He finally sent me to a neurologist who again sent me to have another MRT, this time with elevated arms. Now you could see that the subclavian artery was squeezed and flattened. He also made a nerve testing. Now at last I had a diagnosis and understood why I have these terrible pains at the side of my neck.

On the one hand I am still lucky because my arm feels fine, no problems, only sometimes the arm gets numb at night when being positioned the wrong way or both arms get numb, painful and tingling when I wash my hair or do other things overhead.

I am going to another physio at the moment who is very gentle, doing ostheopathy and craniosacral therapy. Next week I will get trigger point shock waves. I always put all my hope into new therapies but I fear the negative results.

One thing that is very strange - and maybe you know what this can be - is that I feel quite fine when being on the physio's treatment couch (?) but as soon as I stand up after the treatment almost instantly the muscles in the neck and shoulder tighten up and cramp and "my" pain comes in its usual waves. The physio does not know what this is and neither do I.

Well, I hope that my introduction was not too long . I am so glad to have found you because sometimes when the pain is so strong I am very, very devastated and nobody seems to understand. The thoracic outlet syndrome is quite rare here and the neurologist's and the orthopedist's first question was if I would not want to have surgery. Oh my god, never ever. Now my arm is still fine but I have heard that people often have signs of paralysis after such operations and to be honest, who wants to get rid of his first rib right away.

I read about the selfcare program by Sharon Butler and would appreciate if you told me of your experiences.

Thank you for taking all your efforts and time for this wonderful forum.