Hello YanaO,

Thank you for the response, I met with Dr. Lum am getting the same feeling, I like his personallity, he is very attentive and answers all my questions. Do you mind sharing what your recovery was like post surgery, how long was the hospital stay? Were there any complications such as collapsed lung, and how long before you were able to feel better and return to work?

Dr. Lum
 

Hello,

I was recently diagnosed with venous&arterial TOS by my local hospital and my surgeon wants me to get half of my 1st rib and scalene muscles removed. Someone spoke with me and told me that Dr. Lum is the best surgeon for TOS surgeries so I recently met with him for another opinion. His personality was great and explained my two pages of questions. At first he wants me to get lidocaine injections in my scalene muscles to see how that goes before we schedule surgery to remove the entire rib and snip the two scalene muscles. I'm trying to make the decision to either get surgery close to home, or travel hours to JH to get Dr. Lum to do it.

For those who did get their surgery by him, how was the surgery/post surgery and your stay at JH?

I would suggest rather than deciding whether to stay close to home or travelling hours to JH for surgery, that you make your deciding factor be the surgeon's experience performing this surgery.

I met Dr. Lum last December, and really liked him. Felt he knew he stuff, and he is also great about getting back with you by email right away with any little question you have. He had me come back for the scalene block, then we scheduled surgery for the end of January. In the mean time, I met with a thoracic surgeon here(I'm in KY) who I didn't like as much, but, he acted like he knew what he was doing, and we went with the local guy, just for the convenience of not having to travel for surgery. Boy, was that a mistake. My surgery had a lot of complications due to the fact that the surgeon just plain did not have enough experience with it. I will have some permanent disability from the botched surgery. Point is, take it from me, go with your gut. If you feel like Lum is the best guy, then it is worth travelling for.

Most now prefer to take the whole rib as the "stub" sometimes will cause problems later on.. Rubbing, entrapment, regrowth were concerns with a stub being left..

Where is home?

Rich Neville is a vascular surgeon at GW - I have seen him for my TOS and surgery recommended but I'm holding out for now. I was told he has the most TOS surgical experience by a couple of my other docs.
He also has a very objective and thorough diagnostic procedure to definitively say if vascular involvement in TOS.

Successful surgery with Dr. Lum at Hopkins
 

I had a first rib resection and scalenectomy performed by Dr. Lum at Johns Hopkins on July 29, 2013. I live outside of Philadelphia and did A LOT of research and was lucky to find specialists in TOS so close by in Baltimore. I would highly recommend anyone to go to JHS and see Dr. Lum. Although I had been suffering with symptoms for 7 years, I did not have an accurate diagnosis until May 2013. I made the trip to Johns Hopkins a handful of times for various tests and ultimately a scalene block which sealed the deal of scheduling the surgery. Dr. Lum was fantastic - super knowledgeable, helpful and extremely personable. I stayed over one night in the hospital and was out of work for 6 weeks. I began physical therapy 2 weeks post-op and continued twice a week for 12 weeks. When I was released from PT I continued the exercises at home with my own hand weights and resistance bands. It is a long and hard recovery ---- but it is all worth it, I promise. For 7 years I was in awful pain and my life was drastically affected. Now, almost one year later, I am so happy with the results and able to care out daily activities unlike before - and I can ride my motorcycle again if that is any indication of my surgery's success!

Thanks for letting us know of your successful outcome. So happy for you!

I am wondering if you might share a few more details...
Does Dr. Lum use transaxillary approach (thru armpit) ??
What diagnostics tests did Dr. Lum use?
Did you have neuro or vascular TOS? Or perhaps symptoms of both neuro and vascular?
Would you mind sharing some of your main symptoms prior to surgery?

I think I might have neuro TOS (common/disputed form, not true neuro) but I'm still in the process of ruling out other possibilities. I've been doing PT for a while but haven't progressed as much as I would like, so I'm also starting to look into surgery more seriously. It would be great to hear back from you...would really appreciate it. And, thanks again for taking the time to post!

My TOS Story
 

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!
:):)