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

40 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

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.

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.

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.

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.

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

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.
I am 52 now and just had another clot in the right arm. They did thrombolysis and had me on heparin and now eliquis. Turns out I have factor v leiden and it sounds like I will possibly be on blood thinners for good now. The doctor said he is not sure whether I am a candidate for surgery because of the long time damage to the vein anyway.
My question is whether you are still on anticoagulants and if you have a genetic clotting disorder? Also, from everything I read and what the doctors have said, this is not a life threatening condition but more of an issue with the function of the arm in the future. Is this your understanding as well?

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.

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.
Your stories have given us great insight & understanding into my daughters ongoing progress. My daughter is 16 years old, has played a lot of softball, volleyball, lifted weights & crossfit, so all that translates into... put a lot of work & stress on her right arm. In January 2018 her hand swelled up playing softball, went to the hospital, did an ultrasound and found a DVT in her subclavian vein. I had her on a birth control to help control her acne break outs, which also puts you at a higher risk of clots. She was put on Eliquis & baby aspirin, but her arm stayed swollen but never had any pain or numbness. We saw a vascular surgeon and he recommended TPA to blast the clot soon. We went to the hospital a few weeks later, had the 4 inch clot blasted & got word that the vein was open. While the catheter was in the vein, doc tested the compression on the vein & noticed the rib and scalene muscles were "contribution" to the "traffic jam" and clot also. In March she had right rib resection with incisions above and below her clavicle. Went though PT & recovery went well. I noticed she still continued to look blue caused by her prominent collateral veins on her shoulder. Another ultrasound was performed, found the vein had occluded. One vascular surgeon said it was the scar tissue compressing the vein, but the next one that we were further referred to, said it was the old clot, it was extremely frustrating. Even more frustrating, the vascular specialist we were referred to, said he didn't think there is anything further that he recommends to do because he thinks the vein is just going to close up again & is too damaged.
So now as we stand, she is still on blood thinner & her arm is a little swollen. She has blueness on her right shoulder/chest/clavicle area from her collateral veins, her right side bicep measures 14" and her left 13". She has no pain & great strength. We don't go back to see the vascular specialist til December (not sure if he is going to do anything any way). My daughter goes to high school where they do performance training, she tries really hard to do all the work outs like bear crawls, sit ups and push ups, but her arm starts to swell up more and her fingers throb a little bit then she has to stop activity, raise her arm & take a break. The vascular specialist said she can't hurt anything but recommended her to get a compression sleeve to help with circulation, which she is trying to work with wearing.
Sorry to be long winded, but I have had a hard time getting explanations and comforting answers to understand her ongoing care and prognosis from the doctors.
So my questions for any of you: Did your arm measure more than the other for a while? Did your arm slowly get less swollen? Did you use a compression sleeve? Do your arms measure the same now? Can you still see your blue collaterals? Have you returned to your fully active lifestyle? Are you still on blood thinner?
Here is another site I have found useful: https://patient.info/forums/discuss/first-rib-resection-understanding-side-effects-after-surgery
You have all been such a blessing to us, I am so glad we found you and are praying for your continued recoveries and health! Jennifer

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.

Jennifer link

10/12/2018 12:10:17 pm

Hello Sverre,
I am so sorry to hear about your recent dvt, I wish they would have been able to identify your clotting disorders back then and maybe this second clot could have been avoided. I hope you are finding some answers, pray that you are feeling relief and get back to your normal life soon, you are not alone and you have our support! I am curious, do you know if your clot was in the subclavian again, same place, or is it in one of your collaterals?
Initially when Lauren, my daughter, went in for tpa to blast the clot they had told us that she had no clotting disorders, but I am going to ask specifically for reassurance. In her case, they told us in a round about way, that the vein failed to stay open. Contributing possible factors include: damage to the vein from all of her arm related activities (effort thrombosis, Paget‐Schroetter syndrome), old residual clot, scar tissue from the rib resection and b.c. We are from Wisconsin and were referred on to a Vascular Surgeon at Froedtert Medical Hospital in Milwaukee. His options: (1) do nothing, her collaterals are strong and let them keep growing stronger, use compression sleeve for the edema, (2) blast and angioplasty, he thought it would most likely reocclude, (3) reconstruct the vein, not recommend because it meant cutting all of her collaterals that are working okay for her and chancing that the reconstruction might fail, (4) stent, not recommend because it is in a complex hinge. I am hoping her collaterals keep getting stronger and grow to eliminate the edema that she is experiencing. Did your edema and discoloration improve through time? Or did it stay relatively the same through the years?
My understanding is that compression sleeves help reduce Post-thrombotic syndrome (PTS), but the research is ongoing. Sleeves (“gauntlets”) help reduce swelling or pain. In my daughters case she has no pain but it is helping with some the selling.
I really appreciate you sharing your story, knowledge, questions and this site. I understand (somewhat) how stressful a clot can be after seeing my active, strong, tall and physically fit daughter go through it. I have found your story and other's stories reassuring, helpful and hopeful, and am thank to have found you! Don't give up, you are a blood clot survivor and warrior!
Praying for your continued recovery Sverre! <3 0:)
Jennifer
Here are a some websites that I have found helpful, have chatted with others on their dvt issues and have information on factor v leiden:
https://patient.info/
https://www.stoptheclot.org/
https://www.froedtert.com/
https://www.ncbi.nlm.nih.gov/

10/12/2018 04:13:45 pm

Hi Jennifer,
With my initial clot in 1985, the doctor did mention the surgical option but he didn't recommend it because 1) there will always be a tendency for a clot to form in the same place because of the damage and 2) he said it would destroy the collaterals that had been doing such a good job. Then, if another clot formed, I wouldn't have any collaterals to help out. And this was before they discovered the clotting disorder. This time around, the vascular surgeon kept going back and forth about surgery. He seemed to think it was not a good idea because of the existing damage and the clotting disorder. Plus, this is such a rare occurrence that I got the impression that he and the other surgeons in his practice did not have a lot of experience with it. The hematologist indicated that the only reason I should even give surgery a second thought was if I wanted to for cosmetic reasons. The extensive vacularity on the right side. I could care less about that. My clot was in the right subclavian vein. Both instances were in the same spot. The first time around, they only treated with heparin and then coumadin. This time I had heparin, thrombolysis, and now eliquis. The hematologist didn't even wanted to do thrombolysis and the vascular surgeon overruled her. She just wanted to treat with anti coagulants.
I always had some swelling and discoloration since the first clot but nothing that interferred with any of my activities. The only thing I avoided was lots of heavy upper body weight training. I rarely gave the arm much thought over those years and had no issues other than less than perfect circulation to the right arm.
Thanks for your kind words and support. I found this blog and found it extremely reassuring and comforting after the initial shock of the clot coming back. When I was 18, it barely phased me. Different story when you are 52. Very stressful. If your daughter doesn't have a clotting disorder, most of what I read seems to say that she will probably not have to be on blood thinners long term. I am not a doctor, just what I have read on the subject. I hope this helps. I wish the best for your daughter and your family. It's a shock to have something like this flair up because most of us have never heard anything like this before until it happened to us.

10/12/2018 04:39:15 pm

Jennifer,
I realized I wanted to address a couple of things you mentioned and didn't in the last post.
I read about compression sleeves but nobody has recommended them to me as of yet. It makes me a little nervous because I wonder, if we already have a compromised vein, if the compression is a good idea or not? Just a layman's perspective but I wondered if it would be helpful or potentially harmful. I worry that the compression sleeve may put pressure on the damaged area. Obviously, if the vascular surgeon says it's ok, I assume it is.
One thing I do is I will elevate my arm up on some pillows once in a while watching tv.
I live in Illinois, just south of Chicago. Maybe this is a midwestern affliction.

10/18/2018 07:09:02 pm

Hello again Sverre,
I hope you are getting better each day, how is your progress? I must say Wow, you have quite the story with all that you have gone through. Shocking, yes, I agree with you there! I'm glad to hear that the doctor's are communicating together to come up with the best care for you. I feel like I leave the doctor's visits with more questions than I had before we walked in and that I have to pull the answers and explanations out of them, I think that is why I've been so frustrated as a parent watching my kid go through this. You have given me great knowledge and hope for my daughter, I hope it is just a matter of time and her young strong body will compensate and recover. I know the inactivity through the processes has been very frustrating for her, which I completely understand.
As for the compression sleeve, the vascular surgeon recommended it for the edema that she told him that she feels (she gets more pressure or pulsing in her hand) when she is working out. She said it is helping her and she doesn't have to take as many breaks. It goes from her arm pit down to her wrist and she also wears a fingerless glove. I wanted the doctor to explain the sleeve and it's purpose but didn't get the best info from him.
Thank you again for all of your help, it has made a huge difference in understanding all of this. We wish the best for you and your family also!
Midwestern affliction, hmm...maybe a football thing, we live just south of Green Bay :)

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.
I wish the best for your daughter. It's unfortunate but hopefully won't limit her much.

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.

11/8/2018 10:36:48 pm

Hi Kim,
I feel for you and your son. This website has been a great comfort to me as well. It sounds like you are having the same issue of no real consensus on treatment and after care. I would recommend reading every thing you can get your hands on. We have such easy access these days via the internet to so many medical journals and websites that I find it useful. Let's face it, it's no more important to anyone but us who have the condition or one of our loved ones. Does your son have any of the genetic clotting disorders?
I would have replied sooner but for some reason I didn't get the notification this time. I hope for the best for you and your son.

11/14/2018 10:03:00 am

Hello Kim,
I'm sorry to hear about all that your son has going through. And I feel for and understand your frustration as a care giver for your son, the no real consensus on treatment and no good explanations is completely debilitating. I think Sverre said it well with getting everything you can get your hands on, websites like this, blogs and med. journals have helped me a lot with helping support my daughter physically and emotionally cope with all that she is going through.
I found these to be very helpful, you could search what information they have on TOS or chat with people about their TOS stories:
https://patient.info/
https://www.stoptheclot.org/
https://www.ncbi.nlm.nih.gov/
https://www.BloodClotRecovery.net
My daughter's blood clot was from venous TOS; she right rib removed to alleviate the compression on the subclavian vein to help reduce her chances of possible clots in the future with the plans to get her off blood thinners for life. It sounds like your son has the neurogenic TOS. In my daughter's case, her vascular doctor said after she has a few "good" check ups with him, he foresees she will be able to return to an active lifestyle. She is working her way to getting back to "her normal" active lifestyle, but it is taking some extra time, patience, healing, rehabing, etc. but she has had some setbacks also.
So, in my observation as for "needing to adapt to living without your rib", my daughter was very determined and dedicated in physical therapy after the rib resection surgery and has made a full recovery with strength and mobility, and doesn't even notice her rib is gone.
I will note though that her PT was big on retraining and educating her. Her PT gave her exercises that strengthen and stretch her shoulder muscles to open the thoracic outlet, improve her range of motion and posture. Here's a good article relating to that:
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/diagnosis-treatment/drc-20353994
I wish the best for your son and am praying for his continued recovery... and you also! Hope some of tthis helps!
God Blessings!
Jennifer

Christina

1/17/2019 09:53:22 am

Hi Jim,

My 15 year old daughter is a competitive swimmer in Canada (currently ranked top 10, 15 yr old) and was just diagnosed with TOS. Her nerve studies were great, but her vascular tests not so good. She has a cervical rib on the right side and blood flow is slow on that side, but is also slow on her left. Her sports doctor suggests surgery to decompress the cervical rib.

She has been seeing an Athletic Therapist for 5 months and having acupuncture, but the pain is still there. We see the surgeon for a consult in 2 weeks. She only has pain when she swims-no other time.

She swims 17 hours a week and has definitely gotten stronger and bigger over the last 2 years. She also does 4 hours of dryland a week.

Swimming is her life and she has hopes to make it to a University team (of course her dream is the Olympics!). My worry is, if she has this surgery, will she ever get back to swimming? What if she doesn't have it? Is there any other therapy that you've heard of for this?

It's a shot in the dark to reach out, but thought I would.

Thanks,
Christina

1/22/2019 09:30:01 pm

Hi Christina,

Im sorry to hear about your daughters shoulder pains. Thank you for reaching out. While I cannot provide medical advice over the web, I will do my best to provide some general information.

The only options I know of are Physical Therapy (including soft tissue work, dry needling, strengthening, etc...) and surgery. I do know that the surgical options are changing and improving with TOS. Anytime someone is diagnosed with a 'syndrome,' it simply means a collection of signs and symptoms consistent with pain in a specific region. My advice would be to find a provider who can help diagnosis where the cause of the problem is arising from prior to having any surgical procedures done. Additionally, I will say that swimming has been one of the toughest activities to return to (I don't want this to scare you, but just giving honest feedback).

If you have further questions, I do offer phone consultations for 30 or 60 minutes as an option. All the best, Jim Heafner PT, DPT, OCS

12/1/2020 08:35:17 am

Hi Christina,

My daughter is experiencing similar symptoms as your daughter. She plays competitive as it highly national ranked player. I wonder which was the course of action you chose for your daughter?

Hope to get any helpful insight from your experience.

Thanks in advance.

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...?)

I often get a weird painful twinge in my neck when opening my mouth to speak or turning my head suddenly. It seems to have gotten worse since the clot. Has anyone else experienced this? I think based on where I feel the pain that it may be a spasming scalene, but I'm not sure.

Thanks,
Sophie

8/31/2019 09:19:40 pm

Hi all,

Jim Heafner here (author of the original post). For those interested in a TOS educational handout, please check out the link below:

http://www.heafnerhealth.com/tos.html

My Experience with Thoracic Outlet Syndrome

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