My Experience with Thoracic Outlet Syndrome

10/16/2012

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.

After several weeks of no activity and giving myself Lovenox injections, I underwent surgery. The surgical procedure took almost 11 hours. The doctors performed a first rib resection, vein graft, and AV fistula at my right forearm.** Because the anterior and middle scalene attach to the first rib, they removed both of these muscles as well. The following 12 weeks were devoted to physical therapy and rehabilitation. Many of the exercises I performed were for scapular stabilization, postural education, and core strength training.

Collaterals!

At 10 weeks post-operatively I returned to have my AV fistula reversed. During this procedure they performed another Doppler that revealed the subclavian vein graft did not take. This was not a huge problem, but because of this I have some residual swelling in my right arm. My collateral veins now have to compensate because I do not have a working subclavian vein.

First Rib Resection Scar

AV Fistula Scar

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

20 Comments

Kyle

11/30/2012 12:14:03 am

Jim,

First of all, thank you for sharing your case. I have had experience with NTOS patients on rotation and because of this I decided become familiar with the literature regarding etiology, presentation, examination, etc. My question for you is regarding the cause. From what I have read about TOS, it is evident a majority of individuals are actually born with abnormalities that predispose them to TOS, but the TOS does not manifest until the individual experiences trauma or, as in your case, repeated overhead activity and training methods. Did any part of your examination, such as imaging, reveal an abnormal alignment of your first rib/clavicle that predisposed you to TOS?

Thank you in advance,

Kyle

Jim

12/2/2012 03:26:31 am

Hey Kyle,

No. None of my imaging showing any congenital abnormalities of the first rib or clavicle. I honestly believe I gave myself TOS from repetitive overhead activity and weight lifting the anterior muscles too much. Overhead activity and poor posturing narrowed the space excessively. If I only knew about the importance of scapular stabilizers in high school.
Additionally, I have been considering the influence swimming has on the scalene muscles. Because these muscles are accessory muscles of inspiration, if they were repetitively being recruited during strenuous workouts, could they have been hypertrophied and shortened? This would further pull the first rib toward the clavicle. I mention this because I have always been an upper chest breather. If I was never recruiting the diaphragm properly, I imagine these muscles were consistently being overworked.
Interestingly, two of my water polo teammates (on a team of about 18) have also had the same surgery. Currently I am in the process of talking with them about their swimming style, type of breather, TOS imaging, etc...
Thanks for inquiring & let me know if you find any new evidence on Thoracic Outlet Syndrome.

Jim Heafner

Kim

5/15/2013 01:47:52 pm

Hi Jim,
I came across your blog while looking for answers about my recently diagnosed venous TOS. I am basically asymptomatic (my arm never swelled up, no numbness or "heaviness" but I am extremely vascular on the side with TOS, my veins bulge out with abduction, and CT and ultrasound definitely show it is there). The first doctor I saw did not advise me to seek immediate surgery so my treatment was delayed. My new doctor (well-recommended, expert in the field and likable) said that I am "lucky" in that my collaterals appear to be compensating for the subclavian vein that is now completely blocked (and probably damaged beyond repair). This means I don't need surgery to relieve compression of the subclavian vein, since it is basically useless:) I have looked online to see if there is any literature regarding people who have no functioning subclavian vein and are "OK" and I can't find any.

How are you doing? Are you still active? Do you find that some activities are too much for your collaterals to keep up with?

I do martial arts (repetitive arm motions) and I do notice that my veins bulge out during workouts but that quickly goes away without actual swelling of the arm. Feeling like I "dodged a bullet" in that I get to avoid surgery but also feeling like it is too good to be true.
Thanks for sharing your experience and I hope you are feeling better!
-Kim

Jim Heafner

5/20/2013 06:31:40 am

Kim,
Thanks for the comment. While I cannot find any information specifically on people without a functioning subclavian, I can speak from personal experience. Overall, I am doing very well. I am still highly active: participating in crossfit, boxing, 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. Additionally, I have increased resting circumference on my right arm compared to my left, with my R biceps being 2.5 cm larger than my L biceps because of the extra resting fluid. I have talked with a lymphedema physical therapist who recommended getting a light medical grade compression garment. I personally have not done this yet, but it is something I am considering in the future.

I think you are very fortunate to have not needed the surgery. My issues with the subclavian vein are mainly cosmetic at this time (size difference and being highly vascular on that side). I have a few other minor side-effects because of the surgery (problems with my sternoclavicular joint, increased scar tissue build-up, etc.) I cannot speak directly to your case, but I would recommend getting a prescription for physical therapy to address any postural deficits and shoulder blade weakness (if you are not doing so already).

I hope this information helps! Good Luck with everything and if you need more information feel free to message back. Also if you do not mind, keep me updated if anything changes. As a physical therapist it is good hearing different people's history with TOS.

-Jim Heafner

Karlene Hadley

1/29/2014 01:13:32 pm

Jim,
Was interested to hear as time has passed since your response to Kim, as to any more information on a person with an active lifestyle functioning without a subclavian vein. I am seeking all options for my recently diagnosed Paget-Schroetter Syndrome before I make a decision on rib resection surgery. I have developed some collateral veins already. I have resumed working out, but limited to no pushups, and definitely no arms overhead. I am an Asst Pro Golfer and was just about to start my PGA program before my DVT. My friend works with a heart surgeon who had the rib resection procedure for his PSS and regrets the decision when he was 19, given what he knows now how a healthy young person can develop collateral veins. I'm cautious on that aspect in making my decision for surgery or not.

Gemma

12/26/2015 03:12:07 pm

Hi All,

I felt compelled to respond after reading this blog and comments. December 3rd 2015 I was diagnosed with TOS of the subclavian vein. A 5p sized clot was found in my neck and a smaller clot found in the vein of my lower arm. I do not do sports, am not overly active, do not drink and do not smoke. I have been told my variation of the syndrome affects 2 in 2million people as there is absolutely no reason why this should have happened to me.

I had my first rib removed and surrounding muscle. A balloon was inserted into the vein to re-inflate the vein and with the use of dye, this seemed effected. The surgery lasted about 7 hours and was conducted 9th December.

Before the surgery was allowed I had a treatment called lysis. This is a strong blood thinner pumped direct through a cafita into the arm and up into the neck, directly pumping into the clot. After 24 hrs in intensive care this evasive treatment if cleared the clot and the operation was allowed to proceed.

After the main operation the surgeon advised the vein was badly damaged and scarred but they were able to re-inflate. Since my operation I am getting more mobile but still have a swollen forearm. I wear a compression sleeve, attend physiotherapy but am 2 weeks out of surgery so have a long road ahead. I have a veinoplasty scheduled for 18th January and hoping the vein is still open. In the UK they do not like to do vein transplants and if the clot has returned lysis is the only form of treatment going forward. Lysis is very dangerous, there is 5% chance of brain damage, 2% bleed to death and after my surgery my lung collapsed so I now have a weakness there also.

It's nice to hear how others are progressing in a positive way and this gives me hope for the future.

Gemma

Chris

9/22/2013 11:31:23 am

Kim,
I had a pulmonary embolism and DVT in my right subclavian vein 22 years ago due to TOS and the four inch clot in my right subclaian never dissolved. I have had it since I was 20....I am now 42. The collaterals keep me going on a daily basis but I do have pain and tingling daily. I haven't seen a Dr. regarding this for probably 20 years but I think I will now as it is more recognized than when I had my initial experience. I hope that you and Jim are both doing well and I hope this helps. Feel free to email me if you have any other questions.
God Bless,
Chris

Hisham

4/23/2014 12:54:55 am

Hi Jim,

Hope you are well now. I'm being diagnosed of PSS or VTOS , dont know the difference. but for sure Actue DVT upper extermity (left side). I'm on my first month now (havent done 1st rib resection yet) but did vengram where they put me on Heparin and clot buster and next day angioplasty. on 11May will do MRA (mutiple postions) to know exactl if its a muscle or 1st rib.

I want to ask you, how are you doing in your active life? Any pain? Do you have to wear compression sleeves, I'm buying sports one soon, since I can do jogging now (not upper body exercise any time soon).
Any limitation in sports. I like to be active, and I would like to know what if you didnt do the surgery since your clot was gone?

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.

I hope this answers your questions. Please let me know what else I can help with!

-Jim

Jake

7/9/2014 05:04:17 pm

Hi Jim,

You mentioned you had some minor problems with your sternoclavicular joint after the surgery. Could you specify those? I had first rib resection for venous tos about 3 months ago and after the surgery I have noticed that my clavicle is now "deeper" / less visible on the operated side. Actually my whole right rib cage is somewhat depressed now after the surgery and this is freaking me out. I have an appointment with my surgeon in 3 months but until then I can only wonder.

Hope you are doing well!

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.

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.

christopher conroy

1/12/2015 03:25:59 am

Hi Jim,

Just read your blog, great to know there are others in the same boat as I. Similar to your story, I noticed swelling/numbness/dis-colorization etc. in my right arm ~ a week ago 2015. I went to the ER and an ultrasound discovered a large clot in my subclavian vein, I was diagnosed with TOS and the surgical procedure was set up. The procedure went well but I experienced major complications with blood thinner meds; specifically Xarelto. The complications were mainly with joints in lower extremities; knees, ankles, toes, hips. It was painful to walk and when I did a cane was required. Since leaving the hospital I switched from Xarelto to Eliquis, which I seem to be doing better on but still not 100%.

Curious as to what blood thinner meds you're on, or were on and for how long? Docs are telling me I need to be on blood thinners for at least 6 months. I questioned why I need to stay on blood thinners if the clot was removed but was told only that I'm at high risk for more clots now (but they did not explain why). I'll be starting physical therapy in a about a week but my concern is really side-effects of blood-thinner meds. Appreciate any feedback you can offer.

Sincerely,

Chris

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!!

Seth nooe

2/6/2015 04:15:43 am

Jim,

I had my rib and scalene muscles removed 2 months ago for neurogenic tos. I was wondering if you still have any issues with pain from the surgery? I'm trying to get a good idea of what to expect down the road.

Thanks,
Seth

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

Claire

4/21/2015 04:16:39 am

Jim,
I suffered from neurogenic TOS for two years, and had surgery about six months ago. My first rib and scalene muscles were removed, and my pec minor was divided. I was wondering, even though our conditions aren't the exact same, if you've had any reoccurring issues? Or if you still have symptoms from it on a regular basis?
Thanks,
Claire

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.

To answer everyone's questions:
I can almost perform all activities 100% pain free. Teresa, I no longer perform deep pectoral stretches (such as the bench press position) due to instability in my SC joint. Seth and Don, I do have some shoulder instability due to serratus anterior, middle, and low trap weakness. This instability does cause some shoulder winging, but it is manageable and I believe could be corrected with proper strengthening. Claire, fortunately I am really not have any reoccurring symptoms. I have occasional mild swelling in my R arm due to the venous TOS, but it is much improving.

Thank you all for your stories. I will be sure to check this post more regularly now that I no questions are out there!

Jim Heafner

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.

Do you have any thoughts/guidance around what CroissFit elements to avoid or modifications that will ensure I avoid injuring the other side or flaring up my weaker subclavian that was damaged?

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

My Experience with Thoracic Outlet Syndrome

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