[MaryG]

First, I want to say thank you for all the useful information I have found here. I find myself more optimistic since finding this board.
My Journey thus far... 5 years in the making
My symptoms started in May 2009 while performing ultrasounds. My hand would go completely numb within the first few minutes of the exam. This made doing exams extremely difficult, as I needed to utilized both hands for exams. I am right hand dominate and that was the hand going numb. I also was having terrible headaches that began at the base of my skull and had shooting pains to behind my right eye. Pain that went from my shoulder to the elbow to the pinkie side of wrist. I also had pain to the right of my spine between my shoulder blades. It was such a sharp pain at times that it hurt to breathe. I also had muscles knots (trigger points). I was having pain in my lower right back that radiated to my hip and knee. ( Which I had prior to new symptoms in the arm). I also was having trouble sleeping at night because I was constantly waking up with numbness in my arm. Hard to get comfortable to fall asleep. I not only did ultrasound, I also preformed X-rays and Cat scans. I had a 8 month old son and 8 year old daughter at home. My husband was deployed in Afghanistan. I was finding that my hand was going numb while feeding my son, drying my hair, driving and talking on the phone. Essentially any activity that my arm was abducted or elevated. I was advised to file work comp and go to my doctor. I first put on ultrasound restriction, however was able to preform CT and X-rays. I was sent to ortho doc. He thought that it was possibly TOS. I had C-spine X-rays and MRI, a shoulder MRI, Brachial Plexus MRI, and an EMG. I was started on PT for Thoracic Outlet. I did not find that PT was helping much. PT told me that my right clavicle sat higher than my left. She would try pushing downward on it. That hurt like crazy. She would tell me to breathe the whole time she was doing it. So painful. All my tests were negative except EMG showed the start of carpal tunnel syndrome. Ortho doc sent me for consult with cardio thoracic surgeon. I had a positive physical exam for TOS. The doc sent me for an ultrasound of my arm. That study was negative. My employer through work comp sent me to a work comp physician. The physician concluded that I should not be out on any restrictions because my job was not one of repetitive motion. (Which is not true) My employer was forcing me back to ultrasound and I asked them to please hold off to give PT a chance to help. I was still currently working in my other two positions. The cardio thoracic surgeon said that I didn't have tos because all of my exams were negative and that I didn't not have a cervical rib. I was at a loss. I was sent to head PT person (mind you that I was doing PT through the hospital at which I was employed). He said that trigger points was my problem. (Side note, I was young and had blind faith in doctors. Hindsight is that I should have done more research). Since I was reluctant to go back into ultrasound ( the pain and numbness were still in full force and I did not feel that it was good patient care to have a tech whose hand was not properly functioning), my director pulled me into the office. I was told that as of now I was placed from full time to prn status ( as needed with no guarantee of hours). I had the option to sign resignation papers with a severance package. I was angry and upset. Never have I been " let go" from a job. I take pride in my job and work ethic. I never call in and was always there. We could not afford not to have a paycheck or health care coverage and they knew that. So I signed the papers for the severance package which consisted of 4 months of full pay and healthcare coverage. (Hindsight I should of hired a lawyer) I felt defeated. No help for symptoms and thought that I was just going to have to live with it. My Pt ended with no relief. I went on job hunt and was able to obtain a weekend overnight position (that I still have) doing CT and X-ray. I just lived with pain and numbness for the next 4 1/2 years. I finally had enough and started the journey for an answer again. The symptoms have gotten worse over the years to a point that I have ringing in my ears, numbness in lips and tingling on right side of scalp and face, sharp pains around C7 on right side of neck that is tender. Headaches have gotten tremendously worse. I now get numbness in my right foot. I had a MRI of cervical and thoracic. It showed a minimal bulging at C5-6 C6-7. Was sent to spine doctor. She said that the symptoms were not caused from spine and referred me to a rheumatologist. After physical exam with rheumatologist, she said she was going to run labs and really didn't think it was a rheumatological issues. She said I had a positive physical exam for TOS at which point I explained the prior venture with this and how I was told that bc I didn't have an extra cervical rib and tests were negative that I didn't have tos. She said that it didn't have to be structural that it could be functional. She sent me for an EMG. I had that this week with results showing only mild carpal tunnel syndrome. I have been doing my research. For the first time in years I feel optimistic that I may have an answer. My husband and I decoded that going to a specialist is the right thing to do. I am tired and frustrated with being passed doctor to doctor. Expensive test after expensive test. I set up an appointment with DR. Thompson at Barnes in St. Louis. I read so many positive reviews on him from this board. Della was super nice. She asked for my symptoms and said it sounds like neurogenic TOS. I have my appt set up for April 9/10. I pray for some answers and a light at the end of this long exhausting tunnel.....
Sorry this was such a long post and than you for taking time to read. I appreciate any feedback.

[jkl626]

Thanks for sharing-you are not alone!-so glad you are going to see Dr. Thompson and hopefully get some answers.Good luck to you and let us know what he says. JKL

[curby]

You are doing the right thing in seeing a TOS specialist. These forums are an invaluable source of knowledge, too, so be sure to check out the sticky threads. It's a shame it seems to take most people so long to find the proper doctor and the correct care or treatment, and the suffering goes on for so long! Hang in there.

[JR1977]

I'm glad you got lined up with Dr. Thompson. I also found Della nice and helpful. I think you will find that you can really trust his opinion. I definitely felt in good hands once I got to them.

[abegins]

Do you have any lower spine issues? Any explanation about
a possible connection between tos and foot numbness??
thanks and good luck!

[MaryG]

I do not know yet if there's a connection. I know my EMG of my right leg this week was negative. However, when My pain is intensified on my upper, my leg is worse too.

[MaryG]

Thanks everyone for words of encouragement. I am so hopeful. I am only 31 but feel way older!
Abegins: I am not sure if my lower issues are related to my upper issues. I do know that when my upper is worse so is my lower. The days at work when I have to move a lot of patients, it causes severe pain. Both upper and lower seem to be on equal terms pain wise if that makes sense.

[Jomar]

Originally Posted by MaryG

First, I want to say thank you for all the useful information I have found here. I find myself more optimistic since finding this board.
My Journey thus far... 5 years in the making
My symptoms started in May 2009 while performing ultrasounds. My hand would go completely numb within the first few minutes of the exam. This made doing exams extremely difficult, as I needed to utilized both hands for exams.
I am right hand dominate and that was the hand going numb. I also was having terrible headaches that began at the base of my skull and had shooting pains to behind my right eye.
Pain that went from my shoulder to the elbow to the pinkie side of wrist.
I also had pain to the right of my spine between my shoulder blades. It was such a sharp pain at times that it hurt to breathe.
I also had muscles knots (trigger points).
I was having pain in my lower right back that radiated to my hip and knee. ( Which I had prior to new symptoms in the arm).
I also was having trouble sleeping at night because I was constantly waking up with numbness in my arm. Hard to get comfortable to fall asleep.

I not only did ultrasound, I also preformed X-rays and Cat scans. I had a 8 month old son and 8 year old daughter at home. My husband was deployed in Afghanistan. I was finding that my hand was going numb while feeding my son, drying my hair, driving and talking on the phone. Essentially any activity that my arm was abducted or elevated.
I was advised to file work comp and go to my doctor. I first put on ultrasound restriction, however was able to preform CT and X-rays.

I was sent to ortho doc. He thought that it was possibly TOS. I had C-spine X-rays and MRI, a shoulder MRI, Brachial Plexus MRI, and an EMG. I was started on PT for Thoracic Outlet. I did not find that PT was helping much. PT told me that my right clavicle sat higher than my left. She would try pushing downward on it. That hurt like crazy. She would tell me to breathe the whole time she was doing it. So painful.

All my tests were negative except EMG showed the start of carpal tunnel syndrome. Ortho doc sent me for consult with cardio thoracic surgeon. I had a positive physical exam for TOS. The doc sent me for an ultrasound of my arm. That study was negative. My employer through work comp sent me to a work comp physician. The physician concluded that I should not be out on any restrictions because my job was not one of repetitive motion. (Which is not true) My employer was forcing me back to ultrasound and I asked them to please hold off to give PT a chance to help.
I was still currently working in my other two positions. The cardio thoracic surgeon said that I didn't have tos because all of my exams were negative and that I didn't not have a cervical rib.
I was at a loss. I was sent to head PT person (mind you that I was doing PT through the hospital at which I was employed). He said that trigger points was my problem. (Side note, I was young and had blind faith in doctors. Hindsight is that I should have done more research). Since I was reluctant to go back into ultrasound ( the pain and numbness were still in full force and I did not feel that it was good patient care to have a tech whose hand was not properly functioning), my director pulled me into the office.

I was told that as of now I was placed from full time to prn status ( as needed with no guarantee of hours). I had the option to sign resignation papers with a severance package. I was angry and upset. Never have I been " let go" from a job. I take pride in my job and work ethic. I never call in and was always there. We could not afford not to have a paycheck or health care coverage and they knew that. So I signed the papers for the severance package which consisted of 4 months of full pay and healthcare coverage. (Hindsight I should of hired a lawyer) I felt defeated. No help for symptoms and thought that I was just going to have to live with it. My Pt ended with no relief.
I went on job hunt and was able to obtain a weekend overnight position (that I still have) doing CT and X-ray. I just lived with pain and numbness for the next 4 1/2 years. I finally had enough and started the journey for an answer again. The symptoms have gotten worse over the years to a point that I have ringing in my ears, numbness in lips and tingling on right side of scalp and face, sharp pains around C7 on right side of neck that is tender. Headaches have gotten tremendously worse. I now get numbness in my right foot.
I had a MRI of cervical and thoracic. It showed a minimal bulging at C5-6 C6-7. Was sent to spine doctor. She said that the symptoms were not caused from spine and referred me to a rheumatologist. After physical exam with rheumatologist, she said she was going to run labs and really didn't think it was a rheumatological issues. She said I had a positive physical exam for TOS at which point I explained the prior venture with this and how I was told that bc I didn't have an extra cervical rib and tests were negative that I didn't have tos.
She said that it didn't have to be structural that it could be functional. She sent me for an EMG. I had that this week with results showing only mild carpal tunnel syndrome. I have been doing my research. For the first time in years I feel optimistic that I may have an answer. My husband and I decoded that going to a specialist is the right thing to do. I am tired and frustrated with being passed doctor to doctor. Expensive test after expensive test. I set up an appointment with DR. Thompson at Barnes in St. Louis. I read so many positive reviews on him from this board. Della was super nice. She asked for my symptoms and said it sounds like neurogenic TOS. I have my appt set up for April 9/10. I pray for some answers and a light at the end of this long exhausting tunnel.....
Sorry this was such a long post and than you for taking time to read. I appreciate any feedback.

Glad you contacted a TOS spec dr.

If you had any previous whiplash, sports, falls, hits or those upper body type of injuries, you might consider an expert chiropractor.. one that has a mix of skills and uses a variety of modalities.. the chiro I found was the most help for me.

for any head/shoulder hits or bumps, the c1 c2 can become misaligned, and that may throw off shoulders, hips , knees etc -
more info- www.upcspine.com
SIGN / SYMPTOM CHECKLIST - http://www.upcspine.com/self.htm

We also have a lot of self care posts and tips mentioned on the forum here.
How is your upper body posture? head /shoulders forward?
That is something easy to work on while waiting for appt.
Maybe these might help-
http://neurotalk.psychcentral.com/album.php?albumid=422

[MaryG]

I have tried a chiropractor, however, no an expert. He does do manual manipulation and then uses a computer to see where there is misalignment. While visits feel good, it doesn't last. He did adjust my right rib, when it slid into place that provided some relief. I have also tried acupuncture, myofascial release massage, and trigger point injections. My insurance doesn't cover chiro or massage, so those are out of pocket
The only accident or potential injury would have been when I was 15. I was in a roll over car accident and was unrestrained.

[elap]

MaryG, So sorry you've had to go through all this. I relate to much of your experience: the clueless - even incompetent - docs, failed PT, most of your symptoms. The headaches are a killer, I know. It sounds as if you're now in good hands. Please let us know about your experience with Dr. Thompson. It wasn't until I finally saw Dr. Donahue at MGH (after dozens of docs since symptoms began in 2009), that all the bizarre symptoms made sense. Good luck!