Ok so I've been going through the ringer and back for almost 2 years now.

It all started when I bought my first house. I had to repaint the whole thing first with oil based primer and then with the regular paint of my choice. the house is about 1300sqft. About 4 hours into painting on the first day I realized that my left arm was hurting. I was using the roller to paint and just figured that I was just over working myself because I needed to get it all done within a week, so I was moving fast. But by the next day I realized I wouldn't be doing anymore rolling, and so I began trimming everything and called in an army of friends and family to help me finish by my deadline (was getting new carpet installed). This was May of 2009, I will be turning 26 on the 17th of January 2011.

Over the next few months weird feelings in my left arm would come and go but what would bother me the most was numbness in my hand and a deep throbbing pain through the whole arm. And I soon realized that no blood pressure machine was able to get a reading from the left arm. Finally I couldn't take the pain anymore and told my mother who is a nurse in August about this, she suggested I see a Neurologist because of the numbness. He did a nerve test and told me I had a slight pinched nerve in my left elbow but that wouldn't be the cause of the symptoms. He also ordered an MRI of my shoulder and neck. Results came back and he said he saw nothing out of the ordinary and referred me to an orthopedic doctor.

I called a local group I knew (and was comfortable with) and scheduled an appointment. The first doc I saw in the group did some X-ray's and gave me some hydrocodone 5mg and said follow up in a few weeks. My mother (who like I said is a nurse wasn't happy about this and didn't like that doc) suggested I see another doc in that same group who's better with shoulders and necks, so I went and saw him.

This doc ordered another EMG and that one said I did not have the pinched nerve in the elbow. He also requested my records from the Neurologist but this doc pretty much refused to get off the MRI results, and we fought and fought for them. I didn't and my insurance didn't want to pay for another one. But I went on for several months with the new ortho - he suspected Thoracic Outlet Syndrome on the basis of my symptoms and he held my left arm out to the side had me turn my head to my right and he lost my pulse in the arm. So he ordered for some hard core PT and put me on hydrocodone 10mg. In PT they did rib manipulation, which is by far more painful then both of my childbirths combined, not the actual procedure but about 2 hours later, I cried for about 4 hours. I went a few months in PT trying to condition the muscles around the arm and neck to be 'stronger'. (We still had not gotten the MRI reading from the Neuro yet) PT ended up making my life so miserable. I went I did my routine and the exercises they told me to at home, but at this point this was taking over my life and work and school. Did I mention I'm a mom to 2 daughters they are now 7 and almost 3. So when this all began my youngest was just a little over a year old
I told the Ortho that I couldn't go on with PT anymore the pain meds just weren't strong enough anymore and I couldn't afford the PT and, if I wasn't at PT I was at home doing PT. My life revolved around popping pills and burning $$ at PT that made me pop more pills. Finally I told the doc something's got to give he said ok to stop PT and he would look into some things for me and until then to stay on the pain meds and just call him when I needed refill. I would call every 10 days (sometimes sooner in the event of a weekend) and request a refill like he told me to. His nurse mouthed off to me one day and said Dr. XXXXX said if you are going to keep getting pain meds from him you have to sign a contract, I said ok that's fine I'll come in and sign it. She got mad at me for agreeing and said no you can't do that, you have to go to pain management so I said ok where do I go. She tried to refer me to a clinic 30 minutes from my house and work and his office. I told her I knew there were several closer places, and she said well that's the only one we refer to, and if you want pills you have to go there. I told her no I want this to stop I want the pain to go away I want to be fixed, and I knew there was a PM clinic along with a rehabilitation and PT all in one facility one floor below them in the same office and to please refer me there. She refused so that ended my relationship with them.

Then I began to think maybe I didn't have TOS maybe it was Lupus my grandmother had it, so I went to a rheumatologist. This lady was a real quack job, she ordered about every blood test in the world for me. And once they all came back negative she said you have Fibromyaligia. Well I knew that wasn't true b/c that is on both sides of the body and above and below the waist. And my pain is only in my left arm, hand, shoulder, girdle neck area, neck, and back shoulder blades. I told her that, she didn't listen. She prescribed me Cymbalta and said even if I didn't have Fibro that it could help with my pain. UGH! Fine I thought I'll take it, if it will help with my pain. It didn't! And b/c she diagnosed me with that, it's like a permanent F on your college transcripts that you can't get off. The insurance companies look at it and you are automatically put into this outrageously high risk category and your premiums go through the roof. (I'm self employed so I have a very small group health plan and we have the world's worst health insurance and we pay an outrageous amount, the adjuster told me it was b/c of my health records pertaining to this issue). Needless to say I moved on from her b/c clearly she didn't know anything, and just wanted to diagnose me with something!

I had a friend refer me to another orthopedic doctor in another group (hey 3rd opinions don't hurt right?). I went to this guy, gave him the run down and he looked me straight in the face and said ok first things first lets get you off the Cymbalta b/c you shouldn't be on it, second what pain meds help you because you need something to get you through the day w/o tears, third there's not much I can do for you except refer you to another doc. But he's really good and he can really help I think and I really hope this is the last time you are referred to anyone.

That 'last doc' is my current Pain Management doctor. I've been seeing him since April 2010. Initially he went though everything got all my records from everyone I just listed above (except that NEUROLOGIST B/C HE STILL REFUSED TO HAND OVER THE MRI REPORT OR RESULTS!) He did trigger point injections on my first visit and ordered a cocktail of drugs to put me on and PT. I did everything he told me to, to a T. At this point and all these docs nobody knows what's wrong with me, everyone is TREATING ME LIKE I'M FAKING IT TO GET PILLS, BUT I'M BEGGING THEM TO NOT GIVE ME NARCOTIC PILLS AND TO FIX ME INSTEAD. However the PM doc never drug tested me, didn't make me sign a contract, and he looked at me through my tears in that first appointment and said I believe you and I'll do my best to help. Since then I've been switched off the hydrocodone to 5mg oxycodone then 7.5 oxycodone. He's put me on Morphine cream to rub on my skin (didn't help) he's got me on gabapentin, METAXALONE, TOPIRAMATE, valium, oxycodone, and fentanyl currently. It seems like every few hours I'm putting one of these in my mouth. There have been many adjustments over the past almost year with him. We've done a few sessions with trigger point injections. Once in my back only, once in my neck only and once in both areas. On my last visit he tells me some amazing news, well not amazing bumming but amazing also, THAT NEUROLOGIST WHO REFUSED TO GIVE ANY OTHER DOC MY MRI RESULTS OR THE ACTUAL SCAN STILL DIDN'T GIVE IT TO HIM. However he was able to somehow get into the hospital's system where I had the MRI done at and see them for himself and he tells me that I do in fact have the cervical rib. I was blown away I do not remember if he said that it's only on the left side or both. The only time I even see the slightest symptoms on the right side is if I try to sleep on my right side I have pains in my neck area, but I have much more flexibility on the right side in my neck then I do on my left so I'm thinking I only have it on the left. He said it's above my collar bone up in my neck at the base of my neck.

I'M LIKE BLOWN AWAY THE 2ND ORTHO I WENT TO SUSPECTED THIS, AND IF HIS NURSE HAD NOT HAVE BEEN SUCH A YOU KNOW WHAT TO ME OVER THE PILLS HE TOLD ME TO CALL IN FOR A REFILL FOR, THEN I COULD HAVE SAVED MYSELF A YEAR AND THOUSANDS OF DOLLARS IN COPAYS AND TESTS AND PRESCRIPTIONS AND LOST WORK FOR ALL THESE APPOINTMENTS.

NOW GET THIS THE DAY AFTER CHRISTMAS I FELL IN THE ICE AND SNOW OUTSIDE OF A MALL WHO DID NOT CLEAR THEIR PARKING LOT. I STARTED DOING A FOOT SHUFFLE OF SORTS AND KNEW I WAS GOING DOWN SO MORE OR LESS I WAS TRYING TO FALL ON MY RIGHT SIDE SO I WOULDN'T CAUSE MORE DAMAGE TO THE ALREADY SCREWED UP LEFT. It didn't happen I went down hard with my left arm extended above my body, the amount of pain that rushed through my body was so intense I cried from then to my car (I'm right handed so I tucked the arm between my breast and lap and drove home with my right arm) all the way home about a 15min car ride. Called my mother and the on call PM doc. My mom came picked me up we went to the Urgent care center and got X-ray's and nothing was broken in the shoulder, that's what they X-ray'd. (That was Sunday) Wednesday morning I woke up (in the recliner I have been sleeping in the recliner because laying flat causes to much pain) and was unable to move my neck at all it was stuck straight ahead. I called the ortho doc (YEA THE ONE WHO'S NURSE WAS "SO" NICE TO ME. BUT HE'S THE ONE WHO SUSPECTED THE TOS SO I TRUSTED HIM) He did more X-ray's of the neck and collar bone and shoulder again no breaks. However he said this is probably my new level of pain my new norm.

I CANNOT LIVE LIKE THIS. I cant turn my neck to the left AT ALL if my left arm hangs at my side for more then 3 seconds it's unbearable pain (I'm not kidding I timed it) I have to sleep in the recliner in the living room with the arm brace on and a pillow under me from the shoulder to the arm. My back is feeling like it constantly needs to be cracked and it feels like a bone is about to pop out the back of my neck.

I pray someone reads this whole thing because I know it's long and I'm sorry...I'm just rejoicing that there are people out there like me, who have going through hell and back just to find out what's wrong with them, bc of TOS. I know I have the cervical rib and it's compressing the artery b/c my pulse is lost ALOT my fingers get cold quickly and swell pretty fast too. I have no clue what to do.

MY PM DOC IS GREAT HE'S VERY HELPFUL AND NICE AND TRUSTS ME, IT'S SO NICE TO HAVE A DOCTOR TRUST YOU AND BELIEVE THAT SOMEONE MY AGE WITH THE RARE FORM OF PAIN IS REALLY TELLING THE TRUTH. EVERYONE ELSE JUST ASSUMED I WAS LYING TO GET PAIN PILLS. I HATE THESE THINGS, AND BECAUSE OF DOCTORS AND THIS TOS AND CERVICAL RIB, I KNOW MY BODY IS ADDICTED TO THEM NOW, I'VE BEEN ON THEM FOR ALMOST 2 YEARS NOW!!!!! I WANT OFF BUT I NEED TO BE FIXED FIRST BEFORE I CAN GET OFF OTHERWISE DETOXING AND STILL HAVING PAIN WILL BE UNBEARABLE

Who do you guys suggest that I see about this. I know PM doc is only doing his job my giving me meds to take away the pain, that's his area of expertise and he's great at it. However I want the surgery, I want this thing out of me. I'm over it. I'm 26 I want to be able to play with my kids and run my company and write an email or a paper without stopping several times. I want to sleep through the night just once without drugs helping. I want to go to bed at a normal hour and not stay up all hours of the night because my meds make me awake.

But more then anything I don't want my 2 almost 3 year old daughter to look at me anymore and say 'mommy hurt? mommy got bo bo?' I want her to come to me and ask me to do something for her not my husband, because she knows I can't!

I honestly cannot tell you the last time I picked up my kids. I think the last time I held my youngest in my arms to comfort her after a fall or hug her tight because she needs mommy's love was the week before I moved into my house. On our vacation this year (my husband wasn't able to go because of work so it was just me and the kids and my dad) I had to take my best friend because I was seriously scared for my kids life. If they were in the pool playing or on the beach and got in the water to far I couldn't get to them because of this. I had to take my best friend with me to the beach to take care of my kids. I did nothing, she cooked dinner each night and cleaned up, she bathed them, she got them ready each day for the beach or pool and made sure the bags were packed and the sunscreen was on. I couldn't!

WHAT DOC IS THE BEST DOC TO SEE TO DO THE SURGERY? A NEUROSURGEON? (NOT ANYONE AFFILIATED WITH THE IDIOT WHO KEPT THOSE RECORDS FROM ANYONE OBVIOUSLY!) A THORACIC SURGEON? OR A VASCULAR SURGEON?

MY MOTHER BEING AN OR NURSE HAS BEEN ASKING AROUND AND FROM WHAT THE DOCS SHE KNOWS ARE TELLING HER NOT MANY IN MY AREA WILL EVEN MESS WITH THIS B/C OF THE RISK ASSOCIATED WITH IT. AND I LIVE IN RICHMOND, VA. THE MEDICAL COLLEGE OF VIRGINIA IS IN MY CITY.

PLEASE PEOPLE HELP ME OFFER ME SOME GUIDANCE, I'LL TRAVEL IF IT'S NOT TO FAR....

OMG I KNOW THIS IS LONG I HOPE SOMEONE HAD THE PATIENCE TO READ IT ALL...AND PLEASE DON'T MISTAKE MY CAPS FOR SCREAMING....IT'S MORE MY FINGER HIT THE BUTTON AND I DIDN'T WANT TO RETYPE IT ALL....OR I WAS JUST TRYING TO REALLY GET MY POINT ACROSS BUT I REALLY WASN'T YELLING AT YALL!!!

THANKS!!!!


LEISA!

RICHMOND, VA

I think a top THORACIC SURGEON or a top VASCULAR SURGEON.
Please be sure to only see the best - not a surgery for beginners to practice on you.

check our Drs list here-
DOCTORS & PTs List and saved PT info threads
http://neurotalk.psychcentral.com/thread135.html

possibles-
http://www.hopkinsmedicine.org/surge...lty/Freischlag
[Dr. Freischlag is recognized nationally and internationally as an expert in the
diagnosis and treatment of thoracic outlet syndrome.]

http://musom.marshall.edu/medctr/fin...Rebecca&INIT=S.

some of these were just found by searches and may be outdated- but will give you some names and such to search or call and ask for names or referrals
some times you just may have to go out of state.
and there's the ins issues from that - but this is not a time to settle for a mediocre surgeon.

North Carolina

Joseph Whitlark
Clinic: Thoracic and Vascular of Kinston
703 Rosanne Drive Suite A
Kinston, North Carolina 28504
Phone: (252)939-9300
Fax: (252)939-9305

Felix A. Evangelist MD
Cardiothoracic
3601 E Independence Blvd
Charlotte ,NC 28205
Phone: (704)563-7788

Pennsylvania

Dr. Robert Young Rhee / Asst. Professor of Surgery
Presbyterian University Hospital
Pittsburgh, PA.
(412) 383 - 7074
E-mail: rhee@pittsurg.nb.upmc.edu

Dr. Allen Togut - retiring soon?
166 Hanover St. Wilkes-Barre, Pa 18702
Phone: (570)824-2500
E-mail: ajtogut@epix.net
fax: (570)824-7910

Dr N. Gupta
UPMC Bower Hill Rd
Pittsburgh, PA 15228
Phone: (412)648-4000

well that will give you some names - i just listed some from the nearby states- but if you have relatives in Denver, Colorado...or California those are states with quite a few too.


I can't believe that one doc wouldn't give a copy of your MRI to you !

You & your ins paid for the testing.
Some places where the actual MRI imaging is done will give/send you a CD or films or copies of the films & report if you ask right at the time of the MRI.

I did pay 10.00 a page for my MRI films - but I didn't ask for copies at the time of the MRI - it was later on. Got them thru the hospital where they were done.


Meds question-
are any of the ones you have extended release {ER}?
most will have a ER med, a short acting /flare up med, possibly an antidepressant (aids in depression as well as boosts the pain meds) and sometimes a sleep med.

You should see a Vascular Surgeon, especially since you have arterial (lost pulse, cold fingers) and venous (swelling) symptoms. It sounds like you have nerve pain, too, but blood vessels are so delicate I think in a case like yours it would be best to consult with a Vascular Surgeon over a Neurosurgeon.

You are geographically fortunate in being so close to Johns Hopkins in Baltimore. As JoMar said, Dr. Freischlag is an expert in TOS, some might say THE expert. I don't know what your insurance requirements are for referrals, but I'd call her office yourself ASAP and ask her assistant what it would take to get in to see her. Make sure you mention you have vascular symptoms and that you have an MRI showing a cervical rib.

There also appear to be some surgeons at UofVirginia who treat TOS: http://uvahealth.com/services/vascul...utlet-syndrome .

Don't give up until you see the right doctor, especially because you have vascular complications. You may even consider going to the ER when vascular symptoms present and get a workup there (mainly a venous ultrasound to make sure there are no clots) and see if the surgeon on-call will at least speak with you.

I'm sorry you are going through all of this. The doctor shuffle is bad enough, but not being able to live your life and play with your kids is devastating, I know.

Your story, and i read it all is true to all of us who have gone through the TOS shuffling to find answers from the pain. Its insane and patients need to be educated before they go to a physician, physical therapist, surgeon before subjecting themselves to "ish" we go thru. Meds and surgery are not the answer for all cases but needed and only perscribed by the educated TOS professional. Pain management cannot help unless you are diagnosed and the clinic/clinician is also educated on the rights and wrongs to treat.

Here is the site of the Thoracic Outlet Syndrome Consortium.

http://surgery.wustl.edu/TOS_Consortium.aspx

These are the best of the best, educated, qualified and most worthy group of professionals from all over the nation who have come together to create a handbook on TOS. There will be a patient handbook piggy backing. It is in the hands for revisions and reviews.

For those who are just now getting diagnosed, the unfortunate ones who are on-going trying to find answers. This is going to be the key to success. Its all about finding the right physician medically educated in TOS, diagnosing, testing, surgical necessity and getting treatment quickly.

Hope this helps.
We are working on a brochure coordinating with the above for not only the patient, friends and family but the medical professional for you to hand to. Kinda like a medical alert 101 on TOS.

Apparently there is a Dr. Lockhart in Richmond who treats TOS:

http://www.ctsnet.org/home/glockhart

Let this be a lesson to all!!! Doc's can not refuse (legally) to share this info, if you need to get a lawyer involved, do so....

Of course we read your posting. I am so sorry that you are going through this at such a young age. Do see that best TOS surgeon. All records of doctors can be obtained, and I am sure someone here on NT will have gone to one of the doctors you need to see. You have been on the gerbil wheel of medicine, just going round and round. I know what that feels like. I hope you find the greatest tos guy around, and can get the surgery and back to your life. I will be thinking about you. ginnie

I find it strange that the doctor refuses to give you your records.
But you should be able to obtain a copy of the MRI results from the place where they did the MRI.