![]() Well I'm down to 23 ribs... In 2010, my entire right arm started to swell. I went to the Doctor and initially was prescribed antibiotics for MRSA. I had been paint-balling 2 days prior to the incident and had a few open wounds that were potentially infected. The Doctor said to follow up in a few days if I did not improve. My arm continued to swell and became even worse with activity. At the second visit, I was told to go to the hospital to get a venous doppler for a suspect DVT. The doppler revealed a ~4 inch blood clot in my subclavian vein. I was immediately admitted to the ER, placed on blood thinners, and underwent a surgical procedure to remove the clot. Following a 3 days hospital stay, I was diagnosed with Thoracic Outlet Syndrome (TOS) and sent to a specialist at Barnes-Jewish in St. Louis. Fortunately the vascular surgeon I met with, Dr. Thompson, is one of the national leaders in TOS. After a long discussion on the pathology, we discussed treatment options. Due to the severe fibrosis of my subclavian vein, Dr. Thompson highly recommended a first rib resection to open the thoracic outlet space. Additionally, he would perform a vein graft on my subclavian vein.* Other treatment options would have been conservative and severely limited my activity level in the future. Although my case did not allow for this, other treatments include a pectoralis minor release or scalene release.
So why did this happen to me? Growing up I was always involved in athletics, specifically sports that involved overhead activities (mainly swimming and water polo). In addition to practice, I would supplement my training in the weight room. With only limited knowledge of training at the time, I excessively worked my mirror muscles (pectoralis major, biceps, rectus abdominus). This rounded shoulder posture coupled with overhead motion, significantly reduced the space in my thoracic outlet, specifically between my clavicle and first rib. Things to consider with future patients? Thoracic outlet syndrome can be a compromise of any portion of the neurovascular bundle in the thoracic outlet. I should note that I was completely asymptomatic prior to the day when my arm swelled up. While I presented with Venous TOS, >95% of cases are neurogenic. For vascular TOS, common initial symptoms can include a loss of pulse, arm swelling, cyanosis, and a "cool limb." With neurogenic TOS, patients will complain of paresthesias in the entire hand. This may vary depending on the exact location of compression. Common examination tests include: Roos Test, Costoclavicular brace test, and the Hyperabduction test (Check out our TOS tests page for more information). If anyone has any comments or questions, feel free to write below or email me at jheafner@slu.edu. -Jim *Previously vein grafts were taken from another vein in your body (often the saphenous-- the vein had to be double sutured over to size appropriately as the subclavian), but Barnes-Jewish had a "vein bank" where they harvested veins from stem cells. **The fistula rerouted my artery and vein at my distal forearm to circulate the blood ~10 faster back to my heart to reduce the risk of a subsequent clot. Ten weeks after this surgery, I had a second small procedure to reverse the fistula and return normal blood flow. Reference:
Sanders RJ, Hammond SL, Rao NM. Thoracic outlet syndrome: a review. The neurologist. Nov 2008;14(6):365-373
44 Comments
Kyle
11/30/2012 12:14:03 am
Jim,
Reply
Paul
9/12/2022 01:58:02 pm
How long did it take until you could life weights post surgery? Ive been dealing with tos symptoms for 3 years now driving me insane I have tried multiple pt clinics and I never get better. If I were to get surgery how long would it take till I can liift?
Reply
Jim
12/2/2012 03:26:31 am
Hey Kyle,
Reply
Hi Jim,
Reply
Kim
5/15/2013 01:47:52 pm
Hi Jim,
Reply
Jim Heafner
5/20/2013 06:31:40 am
Kim,
Reply
Karlene Hadley
1/29/2014 01:13:32 pm
Jim,
Gemma
12/26/2015 03:12:07 pm
Hi All,
Chris
9/22/2013 11:31:23 am
Kim,
Reply
Sverre
7/26/2018 06:40:12 pm
I was wondering if you ever did end up seeing a doctor regarding your sub clavian thrombosis? Also wondered if you had been tested for any clotting disorders. Your story is similar to mine.
Sverre
7/25/2018 06:10:23 pm
I was wondering how you are doing? I too have a basically non functioning right subclavian. My first clot was in 1985 and my second one was in June, 2018. I am getting different opinions regarding surgery or not. The vascular surgeon says I may not be a candidate anyway because of the damage and the fact that I have a genetic clotting disorder as well. I definitely want to avoid surgery.
Reply
Hisham
4/23/2014 12:54:55 am
Hi Jim,
Reply
James Heafner
4/30/2014 07:39:05 am
Overall, I am doing very well. I am still highly active: participating in crossfit, boxing, weightlifting, running, and anything else I want to do. While I do have a increased swelling in my arm with activity, I have noticed my collaterals have become much stronger over the past 2 years and the swelling subsides quicker after activity. Occasionally I will wear a compression garment in the evenings which temporarily decreases the resting swelling, but it is not necessary.
Reply
Jake
7/9/2014 05:04:17 pm
Hi Jim,
Reply
Todd
10/30/2014 07:46:57 am
Hello Jim very interesting post. I was diagnosed with a DVT in my subclavian vein in 2011 and was treated with anticoagulants for 6 months. Surgery was not suggested or offered. I resumed my athletic pursuits ( Brazilian Jiu jitsu, running and weights) after I stopped the anticoagulants. About a year later I had a second DVT in the same spot but this time the vein was damaged beyond repair and is almost totally occluded. This was figured out after my hematologist decided to send me to a vascular surgeon. My collaterals are actually doing a great job and I have very little discomfort or swelling so that is really not a huge deal right now. What is a big deal is that they are recommending anticoagulant therapy for life because I had a second event. This is a huge lifestyle change. I personally think that this might be unnecessary and that the doctors are being overly cautious for liability reasons. After your surgery did you continue with anticoagulants? Can you think of any reason why it might be necessary? Thank you for the post.
Reply
Christy
1/4/2017 02:57:40 pm
Todd, I don't see a reply from Jim, but I had rib resection surgery Aug '16 and had my subclavian vein angeo open after and my blood flow resumed pretty normally so I did not have to continue on blood thinners.
Reply
Sverre
7/31/2018 11:31:26 pm
Did the hematologist test you for any clotting disorders? If you have a clotting disorder, they typically just keep it in mind in the event you have some type of surgery where they will want to keep an eye on your coagulation. However, if you have a clotting disorder and have had a clot or two, they you are likely to be put on lifelong anticoagulants. I am in the same boat.
Reply
christopher conroy
1/12/2015 03:25:59 am
Hi Jim,
Reply
Teresa
2/6/2015 04:11:29 am
Hi Jim, I'm glad to have found your story. I have ATOS. I have the cervical rib on both sides, a compressed subclavian artery on the right, and when I raise my arm the subclavian vein becomes compressed as well. My right pinky and ring finger have been going numb for 6-7 years. It started during a pregnancy. A yr and a half ago I started Crossfit. I was doing great, other than I couldnt do a snatch because my arms would go numb and tingly. I started to have a lot of neck pain and went to a chiropractor . He gave me whiplash! And its been downhill since then. First I couldnt lift overhead, then I couldnt do any cardio at all because my scalene muscles would bulge out of my neck and the vien inside my collar bone bulges out and its too painful. I believe the whiplash triggered it, and not resting, improper streching made it get worse. I have seen 2 vascular surgeons who say surgery may or not help me. They would remove the cervical rib, and the scalene muscles, and maybe some of my first rib. I am 40 yrs old and I am trying everything I can to avoid surgery. I do not have a clot or swelling in my arm, but I cant use it. I cant open things like a door, a jar, or a bag of chips, I drop things a lot, and its constant numbing and tingling and pain. My arm is cold a lot, my neck swells up with the slightest activity, and the pulse in my arm goes away. My right arm has become so weak in the last 7 months that its drooping, and my right collar bone appears broken if you look at it straight on. (never had an injury other than the whiplash) Oh and I wake up several times thru the night with one or both arms totally dead. I am on month 2 of a very specific PT and just started accupuncture. It has helped a little, they say it could take months to see improvment. I am so happy to hear that you are doing crossfit after all you went through. My question for you is... is there any paticular movements you stay away from, and is there any stretches or strength building you would recommend. I have been reading everything I can on this and you are the first person I have seen do Crossfit after TOS surgery. Good for you! I would appreciate so much any additional advice or resources you have for me. Thank You!!
Reply
Seth nooe
2/6/2015 04:15:43 am
Jim,
Reply
Don
3/16/2015 09:57:28 am
Hey Jim, happy to hear your doing well. My names Don from LI New York. Had some questions about the condition, did you ever get a lot of pain in your scalenes or experience any winging of the scapula? I had shoulder surgery 6 months ago and am now experiencing symptoms similar to TOS/ shoulder instability. I too, used to lift many weights. Hope to hear from you. Thanks bud
Reply
Claire
4/21/2015 04:16:39 am
Jim,
Reply
Jim
4/27/2015 02:17:16 pm
Thank you all for the comments. I am sorry I have not responded sooner because I have not been receiving each notification. Thoracic outlet syndrome needs much more research regarding conservative and surgical management. I appreciate your comments and questions because these are the first steps towards more research.
Reply
Carrie
5/12/2015 06:58:01 am
Jim - I had a first rib resection almost three years ago and have resumed almost all physical activity (including advanced yoga) but remain fairly cautious about overhead work and things like pull-ups. My husband started Crossfit about 7 months ago and LOVES it. I want to join but I'm a bit concerned about flaring the other side or injuring my compromised vein were I had the rib removed.
Reply
Megan jung
3/10/2017 06:43:01 pm
I had surgery for tos on October 4th and I'm having alot of complications. Extreme pain swelling, vomiting, facial numbness and drooping as well as a paralyzed diaphragm. Your stories are giving me hope that this will not be forever. I have had 2 nerve blocks to help with the numbness and I'm going soon to gave a spinal pain stem placed. Unfortunately the diaphragm there is no fix for. In time breathing will get easier
Reply
Sverre
7/7/2018 06:57:55 pm
I was diagnosed with a subclavian thrombosison my right side at the end of my freshman year in college. I was a tennis player and did lift weights and play baseball. After initial heparin in the hospital and 3 months of Coumadin, I was taken off blood thinners and told that I still had an occlusion and, although the doctor advised against it, continued to play tennis my remaining 3 years in college. I backed off the weight lifting and resorted to more bodyweight strength training. I did have some residual discoloration and slight swelling over the years but nothing major. At the time, the doctor advised against surgery because it would damage my collaterals and there would always be a chance of another clot at the damaged site.
Reply
sverre
7/7/2018 07:02:02 pm
I should add that I really appreciate this site. I haven't given my arm much thought over the last 33 years and now this latest incident has really stressed me out. I have found your story and the people who have responded with their stories reassuring. Thank you.
Reply
Jennifer
10/10/2018 08:58:41 pm
Hello Jim, Sverre and everyone, Thank you so much for sharing all of your stories with your dvt, tos and/or rib resection decompression. I am sorry to hear about all that you have gone through but do pray for your recovery and that you find a skilled doctor or PT or knowledge and a great support group that will help you through this.
Reply
Sverre
10/10/2018 10:49:55 pm
Hi Jennifer. I am sorry to hear about your daughters situation. It is almost identical to mine. I was a college tennis player when my event occurred but I have a feeling that it may have been there for a while. That was in 1985. I was on heparin in the hospital and then 3 months on coumadin. At that time, I was told that I have scar tissue and that the vein would be compromised for good. I was told to keep an eye on it. I played my 3 remaining years of college with no problem and competed in basketball and softball leagues for many years. I mostly stayed away from most traditional weight training but I did lots of push ups, chin ups, dips, etc. I would get more swelling in my right arm and some discoloration and I would elevate it to elviate it a little bit. I passed the marine corps physical with no problem or concerns. It was 33 years until I had an issue again that required hospitalization. When first diagnosed, they had not identified the clotting disorders. Now I know that I have two inherited clotting disorders. Has your daughter been tested? I was able to do anything I wanted to do all these years with no problem. Had they known I had the disorder back then and put on blood thinners long term would I have not had this second event? I don't know. I am more vascular on my right side. My right arm is definitely bigger than left but that is not uncommon for a right handed tennis player so I don't know how much of that is attributable to the blockage. I have never used a compression sleeve because it was never mentioned. My understanding is that if she has a clotting disorder, they are less likely to recommend surgery. I don't know if I will be able to do upper body strength training going forward and I will be on blood thinners for life now. Please feel free to ask me any other questions you have. Good luck to you and your daughter.
Hello Sverre,
Reply
Sverre
10/12/2018 04:13:45 pm
Hi Jennifer,
Reply
sverre
10/12/2018 04:39:15 pm
Jennifer,
Reply
Jennifer
10/18/2018 07:09:02 pm
Hello again Sverre,
Reply
Sverre
10/24/2018 08:01:27 pm
I think the most frustrating part, for me anyway, is that I can't seem to get a straight answer about what I should do and what I shouldn't do. Maybe they just don't know. After my first clot, the doctor said my athletic career was over. I went on to play 3 more years of college tennis and continued to compete in tennis and other sports to this day. I am getting more and more convinced that they really just don't know the answers to what to expect with this condition. Which is understandable but frustrating. Couple that with the lack of a consensus on whether surgery is the right thing or not, it makes for a confusing situation.
Reply
Kim Corbett
10/31/2018 09:56:00 am
So glad to find this thread. My son had his first blood clot experience at 16, was given blood thinners, was misdiagnosed. Last fall, when he was 20, had another blood clot opposite side. Then diagnosed with TOS. They removed ribs, one each side. Didn't eliminate the compression problem. During 2nd removal when they realized it didn't work, they looked around for answers, accidentally tore a whole in the lining around his lung, supposedly no big deal. For me it is. He's been through a lot, ICU, 2 surgeries, this error and no resolution. Now they want to do an MRI next month and surgery again through the neck, even more of a risk. I'm thinking we need a 2nd opinion but after our experiences and now reading this, I don't think that's the answer. My son wants a break from all this and plans on going snow boarding in January. This concerns me a lot. I've heard once 2 ribs are removed one needs to adapt to living without them. That he's at more of a risk for example of whiplash. I'm at a loss and quite honestly, terrified.
Reply
Sverre
11/8/2018 10:36:48 pm
Hi Kim,
Reply
Jennifer
11/14/2018 10:03:00 am
Hello Kim,
Reply
Christina
1/17/2019 09:53:22 am
Hi Jim,
Reply
Jim Heafner
1/22/2019 09:30:01 pm
Hi Christina,
Reply
NT
12/1/2020 08:35:17 am
Hi Christina,
Reply
Sophie
8/27/2019 10:16:43 am
I was just diagnosed with bilateral TOS after being hospitalized for a huge blood clot in my right brachial, axillary, subclavian, and internal jugular veins. I was incredibly lucky not to have much swelling or any severe pain, and I'm now on eliquis for a few months and considering the rib resection surgery. My biggest question that no one seems to talk about is the effects of rempving the scalenes. I'm a singer and I know they assist with breathing, so that concerns me. But I'm also prone to headaches from tension in my neck and I wonder if losing some of those muscles could make it worse (or better...?)
Reply
Jim Heafner
8/31/2019 09:19:40 pm
Hi all,
Reply
Good day Jim and All.
Reply
Hugo
12/16/2022 11:37:46 am
Hello, I recently underwent vTOS surgery on my right arm and I'm having a hard time finding good information on how to strengthen the shoulder girdle after the surgery. I'm a big lifter and really want to get back to it, so I'm wondering if anyone can share what they found worked for them.
Reply
Leave a Reply. |
AuthorsJames Heafner DPT, Chris Fox DPT, and Brian Schwabe DPT, CSCS are recent graduates of Saint Louis University's Program in Physical Therapy. Archives
January 2015
Categories |