I know you all can relate! I have been diagnosed with true neurogenic thoracic outlet syndrome. I saw a specialist 5 weeks ago and had a scalene block into the anterior scalene, and a pecoralis minor block.

I didn't get immediate relief that day like I've read you will get if the blocks worked. However, in the days following, I noticed improvement in the neck spasms, and frequency of the cold and numb/tingling hand.

I have also had horribled shoulder pain following the block. Have any of you had this before? I pretty much lost a huge percent of my ROM in my dominant arm where the blocks were. I followed up with specialist a few days ago (I couldn't go in the normal 6 weeks time frame b/c of work commitments) and I was told my shoulder was fine. Basically, it is a "postural" problem. What exactly does this mean? How could my shoulder be fine pre-block and completely unable to use post-block??

This whole TOS diagnosis is frustrating and confusing to me. The whole "unknown" of it all scares me and angers me. My husband asked how I will/should be feeling in a 6 months time frame and I get "I don't know". I understand this is different in each patient.

I didn't know this was a life long chronic condition, either. My husband said he got that it was "implied" to be in conversation with the doc. I didn't understand it to be implied at all my first visit.

How come I feel like I'm not being listened to as "ME" and treated for "ME" ?? Do any of you feel the same way? I really believe that my dr is good, but I'm not getting enough information to make me understand the complexity of this. All I can seem to do at dr appointments is cry and be frustrated.

I am an active and athletic person. I have went from running/playing vb/zumba/walking to completely sitting on the couch and doing nothing. I think this makes me feel worse!! I need to be able to sweep my floor when it needs swept, or reach up in the cabinet for a bowl way up high. I can not do this right now.

I realize that many others have it way worse than me but I need to know how you all cope. I keep getting the "we can get you an appt with the pain mgmt doc" speech, and I don't want to go and be doped up on meds. I have 2 children that need their mother to function. I have a job working with children that need me. I need to be able to have a life and this is wearing me down.

Have any of you heard of the alpha stim? My PT shared some info with me about it and I've researched it. The testimonials are pretty awesome to read!

Thanks for listening, and if you have any words of advice, or specific questions I need to ask, etc. please let me know!

Also, have any of you ever had your shoulder blade (scapula) move over close to your arm pit? Um, that's where mine is at.

Thanks,
rjewels13

I think quite a few of us "were" high achievers - the type A personality..
Seems it bites some of us in the behind...

It takes awhile to figure out that we need to scale back as best we can and be more type B or C.
And accepting the change takes time too, like the stages of grief, we usually have to go thru those in regards to the situation.

What does the PT think about the shoulder issue?
Personally I trust what a expert/advanced PT says about this stuff more than what a dr says, unless something specific shows on testing as to a cause of TOS. IMO.

* PT spends more time with you.
PT studies more on the body /structure/ interactions.

Hopefully your PT has taken extra classes and is working to find what is the best things for you.
It takes time, but if no benefits are seen, then maybe try another PT or DC or body worker of some sort...

The Alpha stim might help , does PT place have one you can try a few times - or do you have to buy one - some ins companies will pay for these things if dr rx's them.

I have a EMS stim & just got a IF stim recently, I use mine for tight achy muscles.

Also read thru the other threads for what things help and what others have tried and found.

I feel your frustration.......... I miss my active life too, VERY MUCH!!!!!!

Just a suggestion but have you considered CBT, Cognitive Behavioural Therapy?
I completed a course last month and it has helped me to install strategies for coping with depression/frustration from long term pain. Basically it reinforces you to plan out your day with the IMPORTANCE of scheduling without fail a DAILY time out for yourself ( even if it's for just 15 mins ) which should include some kind or self-help/relaxation aid for yourself!!!!!!!! Meditation, hot bath, stretching exercises or positive affirmations.... whatever works for you.
I struggle with the fact that despite a painful op I am having to come to terms with the fact that TOS is possibly lifelong and I will have to adapt around it. I have to be more respectful of my body because of it now and a new way of life is necessary.
I'm a mum too but with just the one who is a very young teen with Special Needs. I used to stress out about his struggles and over compensated by doing everything for him but now I've had to adapt our life so that it suits the both of us. I have taken the time to teach him new skills so that he also despite his struggles can contribute towards the running of the household, chores of cleaning his own room and fetching the dirty laundry etc. Not too much but at least enough to take the heavy load of me. Kids need to help out too. No matter the age. You are in need of the additional assistance now and kids always like to help out if they know that mum REALLY appreciates it by giving them LOTS of praise and hugs. You are allowed a "time out" and you cannot give 100% to your family if you don't make allowances for yourself first.
My biggest goal is to remain med free, and each day that this is achieved I praise myself in the knowledge that I have met a personal goal. Don't beat yourself up if you struggle at times.... none of us are superhuman!

Sorry you are having so much frustration rj!

I am seeing a psychologist, also working the CBT as much as I can. It helps.

Your Dr may not be willing (insurance reasons?) or able to tell you the severity of your TOS. It seems like this condition is still being studied, so most Dr.'s aren't really up to speed on the latest findings. I do think it's noteworthy that the National Pain Foundation has given TOS it's own section - not lumped in with many other serious conditions.

I totally understand. I am trying to adjust to this lifestyle. I had the surgery in Sept 2011 and am still dealing with a lot of symptoms. I am, was a police officer and a member of a SWAT team. I was about to be promoted to Lt and Commander of the the SWAT team. I use to work 60hrs a week and now I can barely do anything. Going from a very active life to zero sucks, and has been very hard to deal.
I also had arterial compression which caused me to feel like I was going to pass out since the compression in the subclavian artery would cause my vertebral artery to stop following completely. The surgery helped the blood flow, but still a lot of pain and tingling. I do have pain under the armpit and in shoulders including the scapula area. The neck pain is awful and I still experience bouts of dizziness. The symptoms vary day to day which makes it very frustrating and I feel like the doctors look at me like I am crazy when I explain the symptoms. I cried many times during this when it really first started in April 2011. I had one doctor said he knew the problem and that I should not make any appts. with any other doctors. I found the compression because I made appts. and went to several doctors and luckily found one who did finally listen. I am currently waiting to hear about disability from the police department. I run out of sick time at the end of Feb. so who knows what is going to happen. I don't expect to hear from disability till late March or April. My wife and teenage kids have been very understanding. Going from the good life to this had been very hard. Good Luck to you.