My VTOS
 

I think at this point we've all realized how unique we are and how uncommon TOS is. Many of us are better versed than many medical professionals. I actually had a resident call me an "urban legend" and med school myth. I really just wanted to say thanks to everyone who contributes, even though most of the time I don't comment. Besides the tips and advice it's a huge comfort to know you are not alone.

Here's my story in case is provides insight or comfort. I started having horrible pain in January in my left shoulder and back, which quickly encompassed everything from my sternum to left arm. I was (mis) diagnosed with rotator cuff tendinitis. Thinking back I realize I still had full range of motion, but they're supposed to be the experts! So, I went through 4 weeks of physical therapy- no improvement. Then March 2 I came home from work and felt a tingling I my left arm. I immediately felt it swelling. Within 4 minutes my entire arm from fingers to shoulder had swollen 3 times and turned completely blue. I could tell no blood was leaving my arm, but was rushing in. After an ambulance ride and night in the ER I was admitted to the hospital. There were two blood clots in my upper shoulder/chest region. Two days later they ran the catheter and balloon angioplasty. Two days after that I had my (first) first rib resection. I am 33 and we had no idea. It was not until this we discovered I've had TOS my whole life. My surgeon, who has been a God send, was able to see on my CT scan the problem. He could tell the scalene triangle was smaller than it should be. He immediately knew we were going into surgery. About 2 months later my right side started experiencing escalated symptoms as well. I know you are familiar with the pain I'm describing. I had the right first rib resection surgery May 2. They also stretched the tendon, which can be known to cause additional compression. These are two major traumas in a short period of time. While people will hope for a speedy recovery remember most of them have not gone through this. It's most important to listen to your body. There is scar tissue at the base of my neck from second surgery which has been causing lots of pain. My left side healed beautifully. Keep in mind every experience is different, as is every surgery and all pain. It is very real and has been a whirlwind life changing experience for me. I am back at work part-time now. I've been blessed to be on disability. I still have to manage my activities and know my boundaries. One event too many in a day can cause a severe flare up. My therapist has advised, while painful, this is actually a normal part of the healing process. I hope you all are well with less pain. I am here if I can help- or just listen. This site has done so much for me. Thanks

CT Scan
 

It is interesting that the c-scan was able to show what your problem was. i have not heard of too many people getting one. I am curious if anyone else has had conclusive results with a ct scan?

Who was your surgeon?

I agree- most tests show no compression which makes diagnosis difficult. But I remember in the hospital he showed me the scan, pointed to the area and said "see it's supposed to have more space here. You dont have enough room and you're getting compression on the subclavian vein." He knew it was TOS, which made me very lucky. Dr. Dennis Bandyk, Vascular Surgeon and Professor at UCSD. He did mention later we went straight to surgery due to the DVT, but for him to see the problem was a huge relief for me.

Laur3d, I too have VTOS and compression of the subclavian vein. My doctor has recommended surgery and I was wondering if the compression of the subclavian vein was the clear deciding factor that you needed surgery. I am terrified and would love to ask you a few more questions about your experience if possible!

Hey starlight- I sent you a private msg.

I came via ambulance to ER, and my left arm was completely blue and huge. Since DVT is so uncommon in upper extremities they ran every test. No one had any idea what could be causing this until DR. B. Once I told him they ran a CT scan he immediately left to get results. I think he suspected it before reading.

Thanks, Laur3d!

Well, I am set up to see an expert on Sept 17th. I think some of you are familiar with him- Dr. Richard Braun. He's written "A Physician's Guide to Diagnosing TOS". I've had ongoing pain in my neck and chest following the right rib resection. It could be difficulties or complications due to having bi-lateral resections in 3 months time, but who knows. I think Dr. Braun is my best bet in San Diego to getting further in my recovery process and cutting back on the pain (I'm still in pain every day).

To add to the stress, my company forced me to go back on a medical leave for 60 days a few weeks ago. Since I was unable to work full-time and travel I was causing an undue hardship. (I had actually just hit my 10 yr mark with this company.) Thankfully- I have some good news here. I found out today, I am eligible to apply for Long Term Disability through my company. If my short term elimination period had not passed during that 60 days, I basically would have been unemployed. This is the reason I waited to share the news until now. I am also able to continue collecting short term disability until long term kicks in, so there is no down period. I feel like this is a new beginning- for therapy and recovery, and professionally. A huge weight has been lifted and I can now focus on really healing instead of trying to make every other part of my life fit into TOS. I just wanted to share- but will update again after my new consult Sept 17th. Thanks! Lauren

Laur3d, I still have pain in my neck and chest as well. I too was just recently approved for disability from my pension. I have not worked in a year and a half and it has been difficult to deal. I am glad to hear that you have some issues resolved because I know how that can cause stress

Thanks. Have you gotten any updates as to what could be causing it? My vascular surgeon keeps saying Musculoskeletal. I'm actually having the new Dr also complete papers for my long term disability- I think he may have more insight. My Vascular surgeon said a few weeks ago he didn't see why I still needed therapy. And I've had two rib resections in 3 months! I'm just concerned I won't get coverage for all the time I need, but my appt is before my paperwork is due. Thank God! I'll keep you posted what his diagnosis is too. Wouldn't that be great if we could help each other?

I see my surgeon on Monday. I will let you know how it goes. The last couple of days I have had less neck pain, but shoulder still hurts and I am having trouble lifting it

Good luck- I'll be sure to check back in. Yes, for me it's very odd. It almost seems now like the right side is digressing. Pinching in shoulder, chest, some numbness in hand. I know my clavicle is pushing into my throat, so we'll see. Had therapy today so I am feeling pretty ok right now! She did some light mobilization and taped my shoulders back. It will help for a few days at least. Better than nothing!

Laur3d, thank you for sharing your story!

I have VTOS also, but mine is afecting the artery, not the vein. My main symptom is the "white hand", it gets really pale several times a day. My hand does not recieve enough blood due to the arterial compression. As you, I also had clots, on three main arteries of my right arm, and I also had the surgery with the catheter and ballon. My VTOS is caused by a cervical rib, which I will have removed the 1st of Sept!! :) I am very optimistic about this surgery. I will tell you how it goes.

Catalina- good luck! I'm sure its a relief its finally here. Keep us posted on how your recovery goes. I have gotten the best tips and support from these members myself!

Can you share what symptoms you experienced when you had clots in the arm? Also, how did they detect the cervical ribs? x-ray, ct scan, something else?

Thanks.

Hi Chroma- the clots were actually found because they blocked the vein completely. I felt a twinge in my bicep and immediately could feel my forearm swelling. I looked down and could see it expanding. I checked my arm in the mirror and saw 2 large blue spots on my bicep. I pushed on them to see if they were bruises, but they didn't hurt. My entire arm started swelling and turning red/purple. By 4 minutes my arm was swollen 3 times and blue from fingers to shoulder. I don't have cervical ribs- it was my first rib compressing. My vascular surgeon determined TOS by the CT scan. He could see the interscalene triangle was too small. (Where first rib, clavicle and scalene muscle cross.) Hope this helps.