Blood clot in arm

Recently I was diagnosed with a subclavian DVT in my arm. I came to realize that I should have it checked out because every time I would climb, my one arm would get super pumped very quick and turn a deep reddish blue. I was prescribed blood thinners for 3 months, and all my blood tests came back negative for any genetic predispositions for any clotting factors. I am also a healthy 25 year old male. The clot was dissolved within a month, but I am still dealing with swelling in that arm after two months since being diagnosed. There seems to be a gap in any research on how to get back to athletics (climbing) after something like this happens. I am wondering if anyone has had anything like this happen or could offer any helpful information.

Hi, this is called post-thrombophlebitic, or post-thrombotic syndrome and it is common after venous thromboses. Someone your age should speak with a hematologist re: this issue. I really can't emphasize that enough.

So I have already seen a hemetologist and he was little help. He thought climbing was a stupid sport and suggested that I never do it again to avoid the risk of getting another subclavian clot. I have also seen a doctor at the CU sports medicine complex, and he was also little help. Neither had any explanation of why it occurred or what caused it. Right now I am doing some physical therapy. We are working on reducing the swelling in my arm (lymphatic drainage massage, cold therapy, compression, etc., but it still seems like I'm having to tell the doctors about my own research since they aren't familiar with it. I did read the article about Paget-Schroeder syndrome a while ago, and I am aware of this as a possibility. 

I guess my biggest question is how do I get back into climbing. I am on blood thinners for another month. My doc has cleared me to start climbing in the gym, and yes I know the risks associated with head trauma while on blood thinners; I'm just sticking to really easy stuff. I'm curious if this is a good idea to start getting some mobility back, or is it detrimental to the vein healing process. It is my understanding that my arm is still inflamed because they stretched out due to the pressure when I did have the blood clot.Although my arm is inflamed, it is much less than when I had the clot. Is cold therapy a good idea? Climbing? Stretching? Thanks for the great replies already!!

Sounds similar to an incident I had about a year ago. Thoracic Outlet Syndrome/Paget Schroeder, etc. I found cross training with jogging and other things that dont strain the shoulder as much but still get the blood flowing helpful. A better hemetologist who isn't as bised against climbing definitely seems to me to be a reasonable path.

Not a doctor, but definitely recommend you find one who's familiar with the symptoms and understands your need to keep climbing. Also recommend renewing your focus on good posture and opening up the subclavian space. Yoga with a cautious teacher who's willing to advise against certain movements/positions is always nice, imo. The standard climber hunchback doesn't help the syndrome. As a motivator to say psyched on the physical therapy, you can search for the 1st rib resection recovery story thread here on MP... the surgery and recovery is also no fun and worth trying to avoid if possible.

Cheers!

Last week, I was indeed diagnosed with Thoracic Outlet Syndrome, more specifically Paget-Schroetter Syndrome. It has been a nightmare trying to find a trustworthy doctor, but I have high hopes for the new doc this week. 

Brent, thanks for sharing your story and reaching out to this thread. From all the research that I have done, it seems like surgery is the most effective treatment for TOS. However, it is quite disheartening to read through your past thread and hear from other people who had the surgery that they are still having residual pain after the surgery. I haven't had any tingling, numbness, or pain in my arm/fingers. My only clue was a subclavian DVT, and from there it seemed like I had to self-diagnose via published articles and then try to seek out doctors that were in the TOS field to get proper treatment. Did you have neurological TOS and venous TOS?

I feel like I have great posture, and I train, or was training, muscle groups to help open up my chest. Because of this, I am concerned that any amount of yoga, stretching, etc. wont be able to change my anatomy. But I could definitely be wrong. 

Only thing I know for sure was I was diagnosed with TOS, which also manifested in subclavian DVT. So I was definitely experiencing venous TOS. (I'm not always the best patient when it comes to clearly communicating my symptoms and concerns, but I also pretty much had to lead my medical team into the conclusion that there was something seriously wrong...)  Likely some neuro TOS/general compression too, but that hasnt been an issue much more than general discomfort every now and then that hydration and aspirin seems to help resolve.

My limited understanding is that venous TOS without major neurological symptoms is a sign of compression more on the sternum side of the chest than the clavicle side. I also think it's critical to recognize that TOS/PSS is a syndrome, which is a diagnose based on presentation of symptoms, and does not explicitly identify root cause(s), unfortunately. Which i think makes the situation and medical care all the more frustrating and confusing.

My unprofessional suggestion would be that, if you havent already, you seek a consultation primarily with a knowledgeable cardiovascular doc/surgeon, as well as an ortho if they know this issue. 

And in general, best personal advice Incan offer from my experience is, don't be disheartened. Keep carefully working towards whatever resolution keeps you moving and stoked :)

Brent, your support is keeping me from getting disheartened alone!

I found an excellent doctor and I am scheduled for the rib resection on Aug 29th. The doctor I am seeing has deals with this issue about a dozen times a year, and he seems extremely knowledgeable in the TOS/Paget-Schroetter Syndrome field. He actually trained with the doc who developed the method of doing surgery through the armpit instead of on the chest.

I'd like to ask you about your PT after the surgery. Did you see a PT that specialized in TOS, or did you see a sports medicine PT? Do you wish you did something different with your PT? I just want to make sure that I am on the right track after surgery to get back into climbing.

the more definitive care is the surgical approach, which you've already gotten on track for. good luck!

I've actually had a blood clot in my arm as well (DVT) about a decade ago when I was in my mid 20's as well.  The treatment was super annoying since it took 3 months for mine to go away.  I was similarly otherwise in great health with no family history of similar incidents.

I really don't know what the cause was, which is really annoying.  I didn't climb then but I did do martial arts and was doing a ton of pushups without a lot of cross training to balance things out.  My only guess would be that maybe a some trauma caused some swelling which pinched a vein and caused it, but I really don't know.

It was a one time thing and I've never had any clotting issues since then.

Hi Mitch,

I wish I'd sought more focused PT help, but couldn't afford it. I did general PT based on my surgeons recommendations, previous PT sessions, and my own research and responding to good vs bad pain. I still have aches and pains, especially if I get dehydrated, hungry, or overly stressed, but focus on posture and whatnot seems to help.

Hope you find a great PT! Sounds like your surgeon might have some good recommendations?

-Brent

Brian Shaffer wrote:

Someone your age should speak with a hematologist re: this issue. I really can't emphasize that enough.

This is absolutely correct. (edit: although reading further it sounds like in this case the issue is anatomical rather than hematological) 

Hi all, thanks for all the support and the comments. If feels really good to know that the climbing community really is like a big family and not just a bunch of arrogant people. It makes me so happy that all of you have responded to this issue and have contributed to my situation in a positive way. 

A quick update; I had the first rib resection surgery yesterday in Loveland, CO and the doctor said everything went very well with no complications. I'd say that's pretty good since it was the first surgery I've ever had. He said that the subclavian muscle was pinching the vein pretty good. As soon as that was removed, the vein popped back to normal size. He even scrapped off the scar tissue on the vein that had developed. I spent last night in the hospital for good measure, but will be released in a few hours. I will come back in 10 days for a check up, and then will have another venogram in 4 weeks to make sure all is well and I don't need a balloon angioplasty to expand the vein. At that time, we will also discuss if the other arm will have to be operated on or not. 

I have also scheduled my PT with a therapist that specializes in TOS after the rib resection. Since he is a bit of a drive away, I'll see him a couple times, then he will send his protocol to my usual PT so that I may continue his program closer to home. I would suggest this approach to anyone else. It seems like therapists are willing to share their protocols with other therapists pretty willingly and easily. 

Overall, this has been a long journey, but I'm thrilled to finally be on the road to recovery. In the end, I saw 7 different doctors, with only the last two accurately diagnosing me. I'm glad that I did my own research, as well as received advice from this thread, and didn't take the first doctor's word for what was going on. Although we think of doctor's as these people who know all things medical, it's not the case. Most specialize in a certain field and know very little outside of that field, depending on the doctor of course. I'm not upset with any of the doctors I did see that misdiagnosed me, as this is a rare condition. I have followed up with many of them and discussing what I was diagnosed with so they know the symptoms if another patient comes in with similar problems.

Overall, it appears that climbers are at a high risk for TOS since we spend so much time with our arms above our heads. If you ever feel like you get pumped way too fast and your arm turns a reddish or bluish color, go get it checked out immediately. Waiting only makes the problem worse. 

Thanks again for all the support and comments!

Mitch. Can you comment on how your recovery is going?   I was diagnosed 4 weeks ago with Paget-Schrotter after a bouldering session resulted in a clot and I plan to have the same surgery in a month or 2.  Thanks.

Hey Ben, yeah my recovery from the surgery went extremely smoothly. I spent one night in the hospital and was released the following day. From there, I spent a week at home taking it very easy; most of my time was spent laying and sleeping. I was prescribed some heavy duty narcotics, but I never had any pain. The only 'pain' I had were very tight and sore muscles near the incision site. All I wanted to do was to hang on a bar and stretch everything out, but that would have opened up my incision and who knows what else. After a week, I started PT with a therapist who specialized in TOS. He was a huge help and I would highly highly HIGHLY recommended finding someone who has experience with this. He did a lot of manual massage and I began to do some light stretching as well as some nerve glide exercises. After a month, I was mostly healed up and even started to climb again!

I was feeling great, but had experienced one time where I felt like my arm swelled up slightly when doing some digging with a shovel. I went in for a follow-up venogram to make sure that the subclavian vein was open and fully functional now that the first rib was resected. The image showed that the SCV was still occluded and was not passing any blood. The technician tried to do a quick angioplasty, but was unsuccessful.  When I spoke with my surgeon about this, he believed the occlusion was scar tissue that developed inside the vein due to the pinching, physical trauma of my first rib and collar bone. This could have happened slowly over 5 years of climbing, or it could have formed during the three weeks that I had TOS symptoms but didn't see a doctor and kept climbing hard. 

I had two more angioplasty procedures, both were unsuccessful. My surgeon tells me that I have two options at this point; I can either have a very risky vascular reconstruction procedure, or wait this out (many years) and wait for the collateral veins to get larger to accept the new blood flow. Throughout this whole time, my doctor has been okay with me climbing and suggested I wear a compression sleeve on my arm to help with the swelling that happens with climbing. I have found that climbing on overhanging terrain (my bread and butter) causes my arm to swell the most, so I have been sticking to mostly vertical terrain. It's kind of nice because it has allowed me to work on my footwork more and get much better at slab climbing. We even made a trip down to EPC and did El Sendero Luminoso! 

I am now set to see a TOS specialist doctor in St. Louis at the end of the month to see what can be done. He is a vascular surgeon that works with many athletes, weekend warriors and professional alike, and has written numerous published articles on the subject. The surgeon that I have been seeing has been extremely helpful, but only deals with TOS maybe a half dozen times out of the year so it will be interesting to see a doctor that specializes in TOS.

My advice is to seek out a doctor that has experience with TOS. We found that some surgeons will do the first rib resection, but they may only do it once a year, or even less, but they won't tell you unless you ask. Many doctors are just trying to run a business so they will do almost anything to schedule you for a surgery. Also, post-op, make sure that you keep up with your PT after your surgery because it is essential to heal properly. Stay positive and keep the climbing psych high; many people make a full recovery after the rib resection and return to their sport. Let me know if there's anything else I can help with!

Hey Mitch,

I believe I have probably seen that same surgeon in STL. I just had a first rib resection and a vein reconstruction at the end of January this year. I have also had issues with my vein staying open. I’ve just had my second venogram with an angioplasty. I’m hoping this one works. They still have me on anticoagulation and have just added an anti platelet as well. Good luck on the rest of your journey and keep us informed on the progress. I read in Brent’s other forum post about how his vein is still occuded as well. It looks like he was able to get off of the anticoagulants even with the occlusion. I’m hoping to get off of mine soon so that I can get back to my fun. I was climbing for many years and then have recently gotten into mountain biking. I sure don’t want to crash while on blood thinners. 

If anyone has any input on their experience with a still occluded vein, please let me know how you are coping with it. Thanks!

Bryn, 

Did you see Dr Thompson in St. Louis? I am scheduled with him for vein reconstruction in 2 weeks. Did they say why the vein didn't stay open after they did the reconstruction? Also, what was your recovery like from the surgery?

Mitch,

Yes, I saw Dr. Thompson in STL. They aren’t really sure why the vein won’t stay open. It could be because it isn’t getting enough flow due to the collateral pathways that have formed (possible over some time now). As far as recovery goes, I had my rib resection and vein reconstruction at the same time. The recovery was close to your experience already with your first surgery. This was also my very first surgery and I had know idea what to expect at first. Overall, it hasn’t been too bad. I do wear compression on the affected side every day. I’m hoping this recent angioplasty works. Good luck with your surgery. I work at that hospital. It’s the best around for this type of thing. 

I was diagnosed with a DVT in my non dominant arm a couple weeks ago now.  I have never had a blood clot problem in the past.  Not a real fan of the entire experience. It's very frustrating to be doing next to nothing with my DVT arm and have it swell up and get uncomfortable for a day or so. As much as I am trying to avoid causing my arm to swell, it seems to happen much more than I would like.

Question. At what point should I seek medical help if swelling and tightness continue to happen? Or on the flip side... is swelling and being uncomfortable just something I need to accept?

Regards,
Popeye Arm

Patrick - it sounds like  you should find a doctor that is familiar with TOS and have this sorted out immediately. The longer you wait and allow these symptoms to persist, the worse (and longer) the recovery process will be. This sounds like the exact same situation I found myself in last year. I had a DVT, doctor said "that's weird since you're young and don't smoke,"  prescribed me anticoagulants for three months, and said "hopefully" that won't happen again. However, through many hours of research and talking with more doctors, I found myself to be a classic case of TOS/Paget-Schroetter Syndrome. You shouldn't have to accept the swelling/uncomfortableness until you exhaust all your options to fix the root of the problem.

My advice: find a doctor (usually a vascular surgeon) that has lots of experience with Thoracic Outlet Syndrome today. If it isn't TOS, you could have a blood clotting disorder and in that case, a hematologist would be a better fit.