wordy, as usual:

Dr Phil,

If you meet a person who has Thoracic Outlet Syndrome, you are meeting someone with two lives. The first life, pre-TOS. And the second, life with the TOS beast. I know this because I am one of the many who suffer with this little-recognized condition.

TOS is a compression of the nerves, arteries or veins between the base of the neck, the first rib and the collarbone. From here the network travels, branching and separating, to serve the muscles of the shoulder, arm and hand. Most TOS cases are a result of work-related repetitive strain, whiplash trauma from auto accidents, the physical demands of professional athletics or weightlifting, anatomic anomalies such as an extra rib, or a fractured clavicle. My case is anything but usual.

I was happy with my pre-TOS life - married 17 years, 2 darling daughters, teaching 2-yr-olds at my church's model preschool program. I went to my Dr for a routine exam needed every 2 yrs for my employment, and agreed to his recommendation of a tetanus booster, as I couldn't recall when I'd last had one - I knew it had been years.

That decision heralded the end of my old life and the introduction of PAIN. I had a hypersensitivity reaction to the tetanus shot - either to the tetanus toxoid or to one of the other ingredients. ( I suspect it may have been the thimerosal, as I already would have had a substantial body burden from dental amalgams and smoking for many years.)

Within 3 days my right shoulder dropped an inch and a half. A few days later I began to develop numbness and tingling in that arm. Then my hand wd suddenly become icy cold due to loss of blood flow, at first a few times a day. 2 1/2 weeks after the tetanus shot was given, the PAIN struck. My immune system, roused to fight the invading toxin, attacked the nerves of the brachial plexus as well. I've given birth twice, and I can't describe how horrible this pain was. It had me on my knees, on the floor. No pain meds touched it.

Within 2 1/2-3 wks the initial pain had come down somewhat, from a 10+ on a scale of 1-10, to a 6 or 7, more like an 8 at night. Sleep was very hard, a few hours of broken sleep was it for more than 3 1/2 YEARS. The reaction, brachial neuritis, was diagnosed, and I started my first round of PT. But PT has always made me worse, at least when it comes to trying to strengthen the muscles that weakened and atrophied as a result of the nerve damage.

At 6 months, I was no better, and my pain was getting worse again. I was then diagnosed with Thoracic Outlet Syndrome and Reflex Sympathetic Dystrophy. The RSD was due to the nerve damage, and as a result of the high pain I suffered, my spinal cord had undergone a change in the way it processed or perceived pain, this was explained to me as central sensitization. Because of this, my Dr said even if somehow the nerve damage could be undone, I would still continue to have chronic pain for the rest of my life.

I've had 2 surgeries to relieve the nerve compression (TOS) by Dr Steve Annest in Denver, a 1st rib re-section and a pec minor tenotomy. Both helped relieve symptoms and pain - but also made the RSD pain flare badly. I had tried stellate ganglion blocks and the other treatments available to me locally for RSD, so sought a referral to Dr Robert Schwartzman in Philadelphia. I first went through an IV-Lidocaine in-patient procedure, which I didn't tolerate. Then in Sept '05 I returned for the IV-Ketamine in-patient treatment, which went very well. My pain was reduced for several months, but the travel for booster treatments and battle with the ins. co. over payment for the Ketamine treatment (which I lost) were so stressful that the benefits didn't last as long as they might have otherwise. And without insurance coverage for the ketamine outpatient boosters, I wasn't able to afford to continue.

By late summer '06 my pain was back to it's former level, or higher. With few options remaining, I chose to have a spinal cord stimulator implanted. The trial went fairly well, and the permanent one was implanted in November '06. It has been almost 15 months and the SCS has been a great blessing. It allows me to sleep better, go out to eat or to see a movie, to help my daughters with their homework. It doesn't take away all the pain by far, but enough of the TOS pain in my arms that I am not constantly distracted. I can't do more with my arms than before, as that wd increase my pain and I can only turn up the stimulation on the SCS so far before it becomes irritating instead of helpful. But I can participate in a conversation, concentrate on what I'm reading, or enjoy a couple hours with friends. It's a whole lot more than I had the first 3 years and 9 months of this second life!

I did apply to the Vaccine Injury Compensation Fund, and in July 2006 the Special Master found in my favor, that the tetanus booster was responsible for my brachial neuritis, RSD and TOS. I recently agreed to a settlement, although we had a damages hearing lined up, because this whole process takes so long, and I want to be done with it and move on!

I would really love an opportunity to be on your show! Because TOS NEEDS to be talked about, the public educated, friends and family helped to understand it. People with TOS need others to take an interest, to raise funds for research, more Drs to train in this area - it's VERY difficult to find a Dr with REAL knowledge!

Dr Phil, I could really use some of your wisdom on how to go about building a "new" life when the first one has been swept away by a medical condition. My career, hobbies, my health - it's as though I'm a completely different person now. My condition means I am fairly limited in the use of my arms - or else I will pay dearly for it with high pain - however I would still like to live a life that has meaning, a life that is rich and as full of satisfying activity as possible given the circumstances. I think this is true of most TOSers. But it is daunting to start a new life in middle age, a life completely different than the one you lived before!

TOS - maybe if we spread the word we can prevent some people from living two lives - keep the beast away from a few doors - wouldn't that be a GOOD thing?

Peace,
beth jones