I would like to see a show done on the impact of chronic pain on family and friends and how to deal with it on an emotional as well as a practical level.

I was born with 'extra ribs' which in my mid 30's caused a compression of the brachial plexus. (known as Thoracic Outlet Syndrome) After 4 surgeries to correct the problem (I had to travel out of state to find competent care) I have only slight improvement of the condition. My arms are weak and I have marked loss of dexterity. The pain is severe on a near daily basis. I currently await a favorable SSD/SSI award, then Medicare will help with paying for pain management clinic - but finding a clinic that can cope with my rare and complicated condition will be hard.

You can read about my condition here:
http://www.nationalpainfoundation.or...etSyndrome.asp

I utilize publically funded talk therapy and group therapy but find it difficult - if not impossible - to alienate everyone around me because my under-addressed pain and how drastically my life has changed. From being a productive, working member of society to being a near shut-in handicapped and destitute. It's enough to make a person want to end it all. Nobody wants to befriend a person in pain. And not being able to afford phys therapy or pain clinic, my healthcare team can only throw class II pain pills at me. It's a slippery slope.

There may be many of your viewers out there in similar dire circumstances who may gain encouragement from others in my situation. They could learn how to utilize the public resources in their area, and learn how to take control of their medical care. I can tell you many stories of mis-diagnosis with this condition. It is extremely rare and many hospitals simply have never seen a case of it so either say it does not exist, or say it's beyond their scope and send the patient home under or over medicated.

Please consider this as a show. It could help so many and bring this condition to the Medical community's attention.

Best regards,
Anne M. Stern

Tam, It does sound great. I hope that someone on his staff takes an interest in this when they read it. Linds

Please everyone, find his question, do you have a medical problem, and put your thoughts down!

You can cover your face with disguises,

or even be filmed in the shadow.

Let's at least try. My MySpace topic did get done, and done well.

Come on kids, let's try!!!

Come on now!!!!

I've heard you girls say that you would love to see us on t.v. and get out our message!!!

To prep your message, it's easy:

I got neurovascular neurogenic (and/or vascular)j(or whatever you doc wants to call it today) TOS simply by using by computer keyboard for too many hours, (or whatever fits there as causation)

and then I became progressibly disabled to the point that now I can or can't "blank."

I miss my old life and want to warn others.

My family has been impacted by this injury in the following ways. I could use some help with (family, depression, types of therapy, surgery, or ?)

In between some of these you might have a personal crisis or two to impart, the would make your story unique, or sadly, not unique. I do think there are inadequate warnings in the computer industry to fully educate people on what might happen to their health if they do not follow very rigid policies on ergonomics, time and work load. I would have been one of the fanatics on that - I never would have risked my entire health on a job. Never had, never would have with two tiny little girls with only ME in the world to take care fo them...

So that's my "template" if you will for a Dr. Phil suggested story. It's about the thid prompt in.

PLEASE join in. They've just got to stop using up people like we were throwaway paper towels!!!!

Just wanted to bump this up. I have always felt this should be talked about. I, as I know everyone else, has been treated likethey were psycho or a hypochondriac. I have run into medical professionals who have understood but that was rare. I don't know what angle Dr P could take with this. There are so many, Medical, Insurance, family, career.

It has affected ALL of our famlies and our lives. I used to keep a journal, but, it got too depressing to read. I have tried to keep up with it but have not been very successful. I would like to keep this information so it is written of all that has happened to me. It's sad, but, I do have somefunny stories. Hope everyone is well. Love, Linda

I agree....a great idea. I'll log on and write a letter. If asked to be part of the show, I'll be there...Whatever it takes, people need to be better educated about the term affects of long hours and bag ergonomics can do to a body.



Ann

I agree....a great idea. I'll log on and write a letter. If asked to be part of the show, I'll be there...Whatever it takes, people need to be better educated about the long term affects of long hours and bag ergonomics can do to a body.



Ann

Hi i just wrote in to Dr Phil and told them part of my story and why i think they should do a story about tos and all the stuff we have to deal with and how many doctors don't believe in it and others that are afraid of the insurance companies so why so many of get used and tread like fools and how some have lost there homes and the list goes on and it is time this gets out so every one will now and be prepared if this should every happen to them and may be we can help others you know that kind of stuff i hope that i have not stepped on any ones toes by just doing it but i just wonted to get some stuff off my chest so like i said i am truly sore if i did somthing i shouldn't have

MucKer, YOU DID GREAT!!!!!

You are part of us, we are part of you, we are a group.

Anything you felt like writing was RIGHT.

And thankyou for writing. If I get any response, I will try to get as much help for anyone that I can. I am trying to remain hopeful.

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