Hi all,

Thought I'd share my story with you all because it took me a long time to decide to have surgery for my condition. I am a 32 y/o healthy and active female who had been working in public health and medical research consulting for the past 8 years. I am now 4 weeks post op for venous and neurogenic TOS - I had a 1st rib removal and anterior scalenectomy. My symptoms started 16 months ago with progressive tingling, numbness and weakness in my left hand. A little over a year ago my left arm swelled suddenly to a point where I went to the ER and was diagnosed with an upper extremity DVT and 2 PE's. After hospitalization for clot and PE's and 6 months of warafin and multiple consultations with every kind of dr. I started to learn about TOS. Initally I thought my arm pain was because of the clot and now I realize that the clot was caused by the TOS - the venogram I had was the most telling and conclusive test - I could literally see how the blood flow stopped when my arm was abducted away from my body. I resisted surgery (even after the venogram) b/c of the lack of conclusive medical evidence that surgical intervention would improve my condition and not exacerbate or contribute to long term biomechanical and structual changes in my body-- I consulted with 5 different thoracic/vascualr surgeons -- ultimately I decided on surgery bc of the risk of another DVT. A DVT can kill you - especially with the associated risk of PE's. I am very glad that I chose the surgeon I did - Dr. Dean Donahue at MGH - I had consulted with drs at Johns Hopkins, Georgetown, Cleveland Clinic, Kansas, and Suburban. Each had a different diagnosis, surgical protocol (some suggested a stent!!! can you imagine?) etc. My surgery lasted just under 5 hours and after 7 days int he hospital I am recovering well at home with almost full range of motion in my shoulder and arm. I would be happy to talk to anyone with venous TOS who is considering surgery - I was scared to do it but am really really glad I did.

Moxie,

Glad to hear of a TOSer who is doing well after surgery. I have some specific questions about docs and treatment options that I sent to you via e-mail.

Glad to hear that you are doing so well after your surgery- I know first hand that it is a difficult decision to make- and congratulations on your research and recovery!!

I have ATOS- surgery in 11 days- the same surgery scheduled as what you had done. However, I have not yet had a DVT (or at least one that they have found.) Would you mind posting comments regarding your hospital stay? And coming home? I would love to read your up to the date information.

Thanks so much, and speedy healing to you!
Jocelyn

Moxie,

Thank you for sharing your experience and it's nice to read you are recovering well. Would you be willing to share your selection process and why you chose Dr. Donahue over the others?

I've only heard good things about him.

Warm regards,

Anne

Jocelyn,
Happy to share my experience - feel free to ask any questions as well as share your experience once you've had surgery. I found it really hard to mentally prepare for the surgery because I didn't have anyone to talk to who had gone through the same procedure.

Re: hospital stay and coming home

Hospital stay was 7 days. Was ready to go home after 3 but ended up with air in my lung (common after surgery) that was exacerbated by my vomitting bc of pain medicine. Very helpful if you know what pain medicine you tolerate and which makes you nauseous. If not, it's trial and error, and in my case it took awhile to find a pain med that worked without making me sick. Fortunately I only needed narcotics for 2 weeks total. I am 5 weeks post op now and don't need any narcotics. I am on coumadin and occasionally take a low dose advil for the achiness in my shoulder. My surgery itself was a success - Dr. Donahue found lots of scar tissue around the subclavian vein and 1st rib and clavicle area. He had to make 2 incisions because of the amount of scar tissue that needed to be removed to get to the 1st rib. The incisions look awesome after 5 weeks! The pain I feel now is very minimal and is more of a deep muscle ache. The mobility is good and while it will be another 2-3 months before I will use my arm fully (ie. lift or pull with it) I can wash dishes, do laundry, drive, etc. - also, I feel better! Despite right after surgery feeling like I was hit by a truck, I feel better than I have in 2 years. More blood flow and more energy. Typing is still a challenge but getting better each day. I'd be happy to chat more with you if you like - just let me know!

Hi Anne,
As I mentioned in my post it was a hard decision for me to have surgery - quite honestly if I hadn't met Dr. Donahue I wouldn't have had surgery. I just didn't trust/like the other surgical opinions that I recieved. I strongly believe that he is one of the most thorough, competent, and accountable surgeons out there - as well as he has a great human, compassionate, caring approach to each of his cases. I am post op now but he is always available to me via phone or email anytime I have a question. I feel so fortunate to have found him.

Didn't get an email from you...try again? Happy to share any info!

Thanks for sharing your story, Moxie!

Live in CA, but have family I can stay with in MA, so if Dr. Donahue is so wonderful maybe I'll try to get in with him.

According to the doc I saw today, I have arterial, venous, & neurogenic TOS. I'd previously been diagnosed as just venous and neurogenic (I've had it for 10 years), but he said it's definitely arterial as well -- he showed us how my pulse stops and my veins pop up in certain positions. Apparently the only question is whether the level of compression and the pain/quality of life problems I have warrant surgery.

How long did it take to get on his surgery schedule? How long to get in for the initial consult?

Emma - My initial consult with Dr. D was by phone. Since I live in DC I wanted to chat with him first before heading up there for a consult (driving 8 hours used to be excrutiating) - he called me 2 days later and talked to me for an hour - did a lot of listening and then asked me to mail any records I had for his review. The same day he recieved my records he called me to discuss my case. He thought my case clearly pointed towards surgical intervention (especially with the venogram showing obvious venous occlusion) and suggested we meet in person. His assitant, Pat, followed up with me to schedule a consult at a time that worked for me to travel to Boston, and I was in his office within a month- could have scheduled surgery sooner than when I did, but I needed more time to think about it. What I like the most about Dr.D is that he is conservative and honest about surgical intervention. I believe 100% that he would not have recommended surgery unless he thought it would benefit me and my quality of life - did NOT get this feeling from the 4 other surgeons I saw. If you truly do have a venous or arterial compression than he is def. qualified to give you his opinion. This is a life-changing condition and surgery and I would not have gone through surgical intervention if I didn't have a surgeon with the expertise, experience, and professionalism that Dr. D posesses.

Moxie- would you mind to please respond with your experiences- glad you are doing SO well- in the thread POST OP - 1st RIB REMOVAL?? Those answers right there would be so helpful to read your story!! Thanks!
Jocelyn