Originally Posted by semmons

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.