It is difficult to understand what the pain is or where it comes from when an experienced medical professional is unable to help you... Several of them actually. I had to do the leg-work and the research and find physicians that wanted to help me. It took a very long time, it was difficult and frustrating. You can only imagine how I felt every time a doctor told me, "Sorry, i cant help you but if it gets worse come back to see me." (If they were not able to help me when it was mild pain why would i go back when it was worse?) The struggle to comprehend what it is you are going through takes a long time to deal with.

In 2009 I had my thyroid removed. Following the surgery I awoke from the anesthesia and noticed I had numbness and tingling going through both arms and hands. I asked my surgeon what it was and he told me it was my Endocrinologists problem. I received answers like the one i stated earlier and many more worse answers from medical 'professionals'. The numbness turned into sharp pain and muscle weakness. I noticed i was no longer able to do certain things like hold my nephews without pain coming about and me fearing i may drop them.

The worst thing to deal with is having every medical test come back normal. Normal, what is that supposed to mean? Living in terrible pain and not knowing what happened, that is not how I wanted to spend my life. I was 22 when I obtained this pain. I even went to Stanford Pain Clinic in hopes to have a darn good doctor in a well respected facility help me. The answer i received was, "maybe in 10 years you will be lucky and the pain will burn itself out." That was discouraging, and angering as you can imagine. My local neurologist was doing all he can to help me, I am grateful for that, he tried everything he could think of and listened to my suggestions. Finally one day he mentioned TOS. I was curious and looked into it more. He had the EMG tests done, normal, of course. A CT scan, several blood tests, all of which came back normal. I was heartbroken. We did manage to find Gabapentin and Lamictal to subside some of the pain but it was still pushing through the medication. At that paint any slight relief is better than none. I finally researched more into it and found UCSF....

A retired doctor, who is retired because he has the same condition holds clinics at UCSF for patients with TOS. After the meeting with him, and 4 years later I was diagnosed. I cried. I honestly cried, after being turned away by so many doctors i finally had an answer. Apparently after a thyroid surgery TOS happens at a .01% of the time.... (Lucky me) But it was a new beginning for me. He took out his cell phone during our meeting and called a physical therapist. I was so happy, the physical therapist knew of the condition and has even put together a physical therapy program to help alleviate the pain from this condition. EDGELOW PROTOCAL

Those words will be burned in my memory. I met this therapist and he helped me and I finally found a physical therapist locally that also knows this condition very well. The exercises help reduce the tension in the collar bone area and helps with improving your movements without pain occurring. Normal exercises are transformed for each patient and their capability so that you can function with little pain. I just wanted to post my story and what I found in hopes that it can help other people. The physical therapy program is called the Edgelow Protocal and it has helped me with my pain. I unfortunately lost my job because of my condition and was forced to stop my medications, but because of the physical therapy I found, i don't need that medication anymore and I am slowly learning what i can push myself to do again. I hope this information can help someone overcome the pain in a shorter amount of time it took me.

Thanks so much for sharing your story.
I was also told by a reputable doc that 'hopefully, it will burn itself out' -- just unbelievable!!

As for me - I am still not convinced that TOS is the complete explanation for all my symptoms -- but I am starting the Edgelow Protocol next week. I will be seeing Steve in Hayward. Thanks for the encouraging words on your success with the program. I have tried so *many* different PT programs, its hard to think that this one might actually work. But, hearing succes stories definitely motivates me...

By the way - what doc at UCSF helped you out?

thanks again for posting.

Let us know how you like the program, I may make a trip up there at some point. I am in L.A.

The doctor at UCFS is a retired vascular surgeon. Nimelstein, I believe that is how you spell it. He was very informative, he has the condition as well which helps. What is the facility in Hayward? I met Dr. Peter Edgelow. The one who created the program. Its odd at first and they stick to their program, but I called around to many other facilities closer to Stockton, CA and asked if they were familiar with the Edgelow protocol and they include the original PT exercises and tune it to what you are able to do. I do not know where you live but i found Lodi Physical Therapy and met Monty Merrill. He has a good understanding about the condition and all the people that work there are so helpful. I hope the program works for you. I mean its never going to be 100% cured but i do feel better, the most they speak about is posture. Good luck and let me know how it goes.

If it is okay to ask, what happened that caused your pain? I would say its not 100% of what I have but it is what fits best. Good luck.

- Sarah

You can always call around to offices and see if they are aware of the Edgelow program. Not many people are but I was able to find on person who did know and he was local.

Hi,
I went through a similar process and read many posts from those who went through the same. Glad you are on the right path.
Was wondering about the thyroid thing-can tos effect your thyroid function since it is in that area or is it only the other way around?

Would be happy to hear more details about the pt too!

Thanks and take care!

The place in Hayward is - Physiotherapy Associates at 22330 Main Street, Hayward, CA.
I'm seeing Steve who supposedly practiced with Edgelow for many years before Edgelow retired.

JKL - I'll defintely post back about my experience. Will probably give it at least 12 weeks first. If for some reason, you don't hear from me or see my post - feel free to PM any time.

Wow! That's a unique way to get TOS. I'd be interested to see more about a possible thyroid connection. With all of my imaging, 2 nodules, which were biopsy sized, were found on my thyroid. I also have a goiter and a larger hyoid area. The nodules are benign, but their location had me do some research on a possible connection, especially in relation to one of the nerves which run through the thyroid.

Good luck to all of you doing the Edgelow Protocol. I've done it for years and now blending in some different things I've learned from a CFMT. I think the biggest struggle with TOS patients is finding everything you need in one PT. Insurance companies don't understand this need as well .

I'll be ecstatic if this thing can "burn itself out."

Yes, that is where Dr. Edgelow was, I did not know he retired. I saw him in December 2012. But it is a benefit to have someone understand what the condition is and what can be done to relieve some pain.

Yes, it would definitely be nice if the pain burned out and went away. If only it worked that way, not sure why some doctors think it will. I had everything wrong with my thyroid as well. I haven't heard of it being connected to the thyroid. The reason I got TOS was most likely from the surgery. I have read that in some cases there is a hyper extension of the neck for the whole duration of the surgery. That in turn, will damage the nerves in the neck, strain the brachial plexus and cause this condition. But this pain as an outcome is unheard of which is why there is so much ignorance in the medical field about the onset like mine. I know a few people who have thyroid issues but refuse to get it removed because they have seen the pain i have gone through. I am sure it rarely happens, but i've seen videos on youtube about these kinds of surgeries and doctors seem to not care about tissue or how they handle it. It's gross for one but it also made me think about how not-so-careful they seem. It's never a sure thing that any surgery will go correctly. It's hard to gauge how a patient's body can handle the medicines and stuff.

I am glad that the Edgelow protocol helped. You are so right, insurance companies do not understand what it is like to have a condition like this. I have had to appeal to them so many times just to get things processed and to allow me to go to the doctors I wanted to. I think the most frustrating thing is not knowing anyone that could understand what I went through and not seeing doctors that believed there was something wrong. Being in pain like that and not knowing was the worst part. Because no one knows how to help, or what can help. It's only trial and error with anything doctors throw at you. Being able to see doctors understand this condition, sadly because they have it or their loved one has it, but they understood the most. I felt better about having the condition because I was validated and started on the path of relief.

I have read that whiplash can cause this kind of condition. The bad thing is I like going to amusement parks but i can only do one or two roller coasters every time I go, it flares up the pain.