Originally Posted by wlcasa

I'm happy to share some more info - its a long story! My diagnosis was Neurogenetic TOS after a long road of the unknown. My symptoms started several years after I was in a bad car accident in 2005. For the following 7 years I suffered from many symptoms including sharp nerve pain shooting from my neck all the way down to my fingers, constant pain in my shoulder, neck and arm, stabbing headaches on the left side, numbness and tingling in my hand/fingers, loss of strength, and often I couldn't hold anything in my left hand without dropping it.

I went to every kind of specialist imaginable - an orthopedist, neurologist, infectious disease specialist, rheumatologist, acupuncturist and a natural/homeopathic doctor. Diagnosis theories varied greatly over the 7 years, but nothing ever "stuck" and "made sense" --- everything from carpel tunnel, a musculoskeletal problem, herniated disc, fibromyalgia, lyme radiculitis, brachial radiciulitis secondary to lyme disease, and a cervical strain. With every different diagnosis, came a different medication, physical therapy regimen, x-rays, MRIs, EMGs and blood tests.

When nothing improved my condition and tests led to dead ends, I finally gave up on the doctor visits and learned to live with the pain. Most important regarded my posture. I ordered a special office chair for work that was tall with a headrest and armrests. If I wasn't sitting tall and straight all of the symptoms drastically worsened. For a period I wore a kind of brace that you put on your shoulder like a shirt sleeve, and it had velcro straps that essentially held my shoulder back, thus keeping that brachial plexus area open; that was helpful.

After a year, my symptoms worsened and I decided to hit the doctor trail once again. My primary doctor sent me back to the neurologist. After hearing how many diagnosis's had been "eliminated" over 7 years, he quickly said he suspected TOS. I failed all of his tests with flying colors. Rather than getting a surgical consult from my local vascular surgeon as he had recommended, I started my research which led me to Dr. Julie Freischlag at Johns Hopkins who is THE expert. Luckily Baltimore is only 1.5 hours from me. I had to submit an application to have a consult with her. I mailed them 7 years worth of medical history and test results and they accepted my application to visit Hopkins. Unfortunately, Dr. Freischlag is in high demand and couldn't see me for three months. Dr. Ying Lum was then highly recommended as he studied and worked directly with her. My consult with him went very well. He was extremely knowledgeable and personable. He said because I had already eliminated everything else and failed his in-office tests like the adson test, he agreed I did likely have TOS and was a good candidate for surgery. But first, I had to do another round of physical therapy as a last ditch effort before he would cut. The PT went horribly wrong and increased the pain immensely. I subsequently made two more trips to Hopkins for a left upper extremity veous duplex test and bilateral arterial/venous TOS evaluation, then a scalene block injection. When the scalene block proved successful, surgery was scheduled within the month. While I was going back and forth to Baltimore from Philadelphia over 6 weeks or so, Dr. Lum was always easily accessible by phone and email for any questions I had.

Dr. Lum performed the surgery in July 2013 with a transauxillary approach. My incision is 3-4 inches wide just below my armpit. My first rib was removed as well as the scalene muscle. I stayed in the hospital one night, then returned home. I was unable to lay down for several weeks and had to sleep in an arm chair as I had referred pain in my back at my shoulder blade. 10 days post-op I returned to Hopkins for a follow-up with Dr. Lum and he said my recovery was right on track, although I begged to differ because I was in a lot of pain. I knew the recovery would be long and hard, but it was worse than I prepared myself for, which in turn made it very hard emotionally.

2 weeks post-op I started PT twice a week for 12 weeks. I also had to do exercises everyday at home on my own. I returned to work after 6 weeks at home. Sitting at a desk all day was not comfortable at all, but Dr. Lum said I could go back as long as I promised to get up, walk around and stretch my arm out every 20 minutes so I wouldn't stiffen up, and allow a higher probability of scar tissue to form, which would in turn make the surgery worthless. I am now almost 1 year post-op and the difference in my life is really amazing. After the surgery, I was completely numb between my armpit and my elbow (on the under side of my arm). It was the weirdest feeling and very annoying. Dr. Lum said that could be a result of the surgery that might not improve - and it never did - but I've gotten used to it. I only really notice it now if I've excessively used my arm in a day, and even then, it just feels like a big fat lip when you've left the dentist.

I still had a fair amount of symptoms from the surgical recovery for a good 6 months. But now, I no longer have the shooting pains or headaches. My hand gets slightly tingly still and occasionally I'll have a quick feeling of tweezers pinching my arm. However, compared to everything I've been through over the years, I'll take it! I am still very conscious of my posture. Keeping your back and neck straight, and your shoulders back makes a big difference. I still use my hand weights and resistance bands on occasion to keep everything loose and to gain more strength in my arm and hand. I do still avoid lifting anything too heavy - for one, I don't have the strength I once had and two, it only makes my arm angry because it remembers it is still recovering from nerve damage and a serious surgery. So, I take it easy in that department, but my daily life is no longer constantly interrupted. I am so happy I finally got an accurate diagnosis after such a long road and was able to find a wonderful surgeon who really knew TOS, inside and out. That was extremely important to me, and I couldn't recommend Dr. Lum anymore! Best of luck to you!

Originally Posted by Akash

Thanks for this informative post. Even my TOS started after an accident. I sent you a PM. Can you let me know which brace you used - that would be very useful.

Originally Posted by YanaO

I had very similar story and had surgery performed by Dr.Lum with similar results.It looks like you are my TOS twin brother or sister.
I can recommend using creatin supplement while you are working on restrenghtening your muscles.
Yana

Originally Posted by soccy

Hi, everyone. It has been a while since I posted and I wanted to follow up with a response on how I have been post surgery. I underwent surgery for a first rib resection and scalenectomy back is September 2014 with Dr. Lum at Johns Hopkins followed by venoplasty 2 weeks later. It took me a really long time and many doctor consultations, each with a different surgical approach before I finally decided to have the surgery, and am very happy to have decided to have the surgery with Dr. Lum. The surgery took about 2hrs from the time I was taken into the operating room. The incision was made tranaxiallary (armpit) and is about 2-3 inches long. . I was pretty soar all over after the surgery not just around the incision but pretty much my whole upper body, but I was able to manage with the pain medication I was given. I didn't get much sleep while in the hospital but I was able to walk around my floor throughout the night which I think helped in my recovery. I stayed in the hospital overnight and was released the next day in the early afternoon. The first week 2 weeks post surgery I was pretty soar but was able to do all activities of daily living just being cautious. I did experience some numbness in my armpit and the back of my arm, but that has gotten better over time and has pretty much disappeared. During my surgery I also experienced a small pneumothorax which caused my breathing to be a bit labored for a few days post surgery, but that also healed on its own and did not require a chest tube. I started physical therapy about 3 weeks post surgery and returned to work 5 weeks post surgery with a restriction of 10lb weight limit. I am extremely happy that I chose to have surgery with Dr. Lum and cannot say enough good things about him. He was always very easy to contact through email and always answered any questions that I had.
I know it is a difficult decision to make to have surgery and ,I would be happy to answer any questions anyone may have about my surgical experience.