[copied from the intro thread]

I'm a 39 year old male. I gave my self Paget-Schroetter Syndrome from weight lifting. Last summer (6/26/2014) I threw a clot down my subclavian vein. After months of testing, research, and waiting, I found specialists who could diagnosis the problem.

I had a first rib resection last week (5/5/2015) with Dr. Donahue. It went very well, far, far better than I expected. I went off prescription pain meds in less than a week (5/11/2015) and stopped taking Tylenol yesterday (5/13/2015). I am virtually pain free and have full range of motion. I'm now waiting for a venogram and angioplasty.

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Here's a timeline with some resources that I found helpful.

Spring 2014
I increased the frequency of overhead movements. I started doing overhead presses twice a week. I was also doing pull ups, chin ups, downward dog, handstands, and supermans frequently.

6/26/14
My right arm started swelling mid day. It felt like I had just done some high rep curls. It turned a little purple, so I went to an urgent care clinic. I thought it might be a bee sting, though I've never been allergic to bees. I guess I put the bee sting idea into the doctor's head. She gave me Prednisone. This certainly didn't help.

6/27/14
In the morning the swelling had gone down, so I went for a run. At 3 miles my arm was huge. The 3 miles home were very uncomfortable. The swelling got worse. I went back to the urgent care clinic mid afternoon. They immediately referred me to the ER. They said that I had compartment syndrome and might loose the arm!

At the ER they didn't know what to make of things. At first they thought I had a biceps tendon tear. I thought it might be due to an injury I incurred that week doing dips. . . .

Eventually they did an ultrasound and found the clot. They put me on blood thinners and told me to see my PCP. The resident said that this was the kind of thing they see in volleyball players, but he didn't seem to know about Paget-Schroetter.

(I know now that they should have performed Thrombolysis and done a venogram. Thrombolysis is the current recommend standard of care for cases like this.)

6/28/14
I saw my PCP. He emphatically said that this couldn't be due to an injury and that I would have to stay on blood thinners for the rest of my life if it happened again. He referred me to a hematologist for further testing. (I fired this PCP as soon as I could get another.)

7/?/2014
I started doing some research. I thought that this had to be related to weight lifting in some way. I found a helpful thread elsewhere called "Training while on rat poison." A doctor participating on that forum mentioned decompression surgery in the thread. That got me looking into things.

Initially, the most helpful article I found was "Upper-Extremity Deep Vein Thrombosis" by Goldhaber.

7/10/2014
I saw the hematologist. She ran a battery of tests and detected a lump in my testicle. I brought the Goldhaber article and some other stuff. She listened and ordered a vanilla chest and neck CT scan to see if there were any obvious problems.

7/?/2014
I had an ultrasound to see if the lump was a tumor. It turned out to just be a cyst.

The ultrasound revealed nothing unusual. Since it was arms down, this isn't surprising. The radiologist didn't think that they could see compression with the clot in place. (It turns out that he was wrong.)

7/?/2014
I saw an orthopedic surgeon. I thought he'd know something about Thoracic Outlet Syndrome. I even brought the blog post and the Goldhaber article just in case. The orthopedist dismissed the idea since I was pain free. I guess he didn't know that there are vascular forms of TOS. Good grief.

7/?/2014
After having read through a bunch of the literature, I saw that the effectiveness of thrombolysis diminishes greatly after two weeks and that the long term outcomes for conservative therapy (anti-coagulation and elevation) were bad, I made a hasty appointment with an interventional radiologist.

The IR thought that I had Paget-Schroetter. He did the Adson test and a few others. My pulse is obliterated when my arms are raised.

He recommended against thrombolysis though. He said that it was too risky and that everyone he knows has seen things go very wrong during the procedure. (At this point, I really don't know what to make of this.) I think he was excessively conservative, though nice. He didn't even think that I should be running until I was off the Warfarin. ???

He recommended that I simply wait and see if I would have another clot.

At this point, I knew that I would need to find a specialist. So I tried to make an appointment with someone in Goldhaber's group. I made an appointment about a month out to see Dr. Piazza at B&W.

8/1/2014
I finally got in to see Dr. Piazza. He ran a huge battery of tests an ordered an MRI with my arms in a provocative position. Finally!

The MRI took about 45 minutes. My hands went numb. They did imagining with my arms up and down.

Piazza called me on Saturday with the results: Thoracic Outlet Syndrome on both side. He immediately referred me to Dr. Donahue at MGH for decompression surgery. Piazza said that he had seen excellent results in his referred patients.

8/3/2014
I started working out again, avoiding any overhead movements.

11/5ish/2014
I had a CT scan in preparation for my appointment with Dr. Donahue.

11/17/2014
I finally got in to see DR. Donahue. I was worried about the delay at first, but I'm so happy I waited. He went over the options and recommended a first rib resection to avoid damaging the vein further and to head off possible nerve damage. He was booked until late February, but that wouldn't fit my schedule. So I had to wait until May.

11/17/2014 - 5/5/2015
This was a long wait. I became obsessed with the surgery. Some of the horror stories on this forum scared me more than anything. That's the main reason I'm posting now.

To prepare, I tried to gain weight and increase my strength. I went from a body weight of 191 lbs. in July after the clot to 220 by March. At the time of surgery I weighed 217. I was stronger than I've been in my entire life. As part of my routine, I did a ton of inverted rows, 3 times every two weeks. Otherwise, I did a Starting Strength linear progression.

5/5/2015
I had a first-rib resection at MGH. It went great. Dr Donahue's team is fantastic. They even called my wife mid surgery to let her know that things were going well. MGH was excellent and the Thoracic unit is great.

The surgery took about 3 hours. I was out of recovery in less than two hours. I woke up pain free. They gave me toradol, an excellent anti-inflammatory that lasts for about 6 hours. It tastes like nail polish remover when you breath it out.

I was hooked up to a morphine drip that I could control with a button. It did nothing but make me nauseous. So I stopped pressing the button. The next day, I started on a low dose of Oxycodone and Tylenol. I only took 5mgs of Oxycodone every three hours.

The pain on the second and third days was worse, but mild. I've had far worse pain from post exercise muscle soreness.

5/7/2015
On Thursday, the drain had stopped filling and I was discharged from the hospital with a prescription for Oxycodone and a set of simple exercise to perform three times a day.

5/11/2015
I stopped taking the Oxycode.

5/13/2015
I stopped taking Tylenol regularly.

I'm now waiting to schedule a venogram and angioplasty.

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I wish I could have found Dr. Donahue sooner. If I had known who to talk to, I would have been able to get in earlier and have had the surgery during the winter break.

In any case, I'm very happy with the results so far. We'll see what the venogram shows in a few weeks. They expect the vein to be very damaged.

I'll chalk my speedy recovery up to the skill of Dr. Donahue and his team. I'm not sure how much my strength training contributed.

It's been a week and two days and I'm now down from 217 to 209. I expect to drop another 10 pounds in muscle, as I can't workout for some time. . . .

Welcome Smuts.

Smuts - Thank you so much for all this detail!! And, glad to hear the operation went smoothly. I have just a few follow-up questions if you don't mind...

* Did Dr D do a neurolysis of the brachial plexus? Did he mention anything about having to remove scar tissue from the nerves?? This may not have been necessary given that you had venous TOS.

* Did you have the full rib removed? For vTOS, some docs remove just the anterior portion of the rib (the most problematic section for venous compression), while other docs remove the full remove. Each approach has advantages and disadvantages. What did you have done?

Thanks again for sharing your experience, and hope to hear back from you.

I don't think so. I'm not sure what this is. I don't recall reading anything about neurolysis during the surgical proceedure. You can find Dr. D's 10 page description of the procedure via Google. I can't post links yet. Just search for "first rib resection." It's one of the initial results.

For people with nTOS I think they do Botox injections and PT for a while before considering surgery. This wasn't an option in my case.

I had no nerve pain at all before the surgery. After the clot, occasionally when reaching my right arm over my left shoulder, I would feel a little irritation, but that's it.

I was pain free before the clot, showing no symptoms. After the collateral veins formed, I'd say in about a month, I didn't have any pain from the clot.

My right hand has been dusky ever sense. And my right arm swells a little bit during vigorous activity. The collaterals can't keep up.

Yes, the surgery took about 3 hours, a little longer than normal. There was a lot of scar tissue in the area. He expects that the vein is very damaged. We'll see when I get the venogram.

The nerves were slightly irritated after the surgery. I had a mild tingling in my little and ring fingers for about 2 days. It's completely gone now.

Yes, the full rib was removed. You don't want parts of it growing back. This is standard from what I've read. They expose it and then cut it in half in the middle. Then they yank out the two pieces.

I've had a little irritation in my upper back since the surgery. It's fading now. Again, the discomfort is minor.

The surgery was performed via the supraclavicular approach. No major muscles were cut. This is more technically demanding than the transaxillary approach, from what I understand. But recovery seems to be better. I don't think they can get in from the arm pit without cutting through some muscles. But I'm not sure.

I am almost in the same situation as you described. Got a clot in subclavian vein November 2013. After a few months, no pain or any issues with the arm apart from slight redness at the end of day.

I still can't decide whether to do the surgery or not. Would you do the other side as well?

I suppose I am afraid of developing pain after the surgery and as I have zero pain now it's a hard decision. Btw I am still on Xalerto and will be till I decide whether or not have a surgery. I also have a lot of collaterals developed but it seems they also get compressed when I raise my hand.

My surgeon said there is no harm in waiting and that it won't affect the outcome of the surgery if I wait. I am in UK, btw.

I had the surgery for a few reasons.

1. I wanted to be able to raise my arms above my head. This limitation is seriously constraining my weight training and is a general pain.

2. I didn't want to be on blood thinners for the rest of my life. The risk of some kind of bad car accident, fight, head injury in the next 40 years is too great. And the long term side effects of this stuff isn't that well known.

My surgeon said that having a vein as damaged as mine was a clot risk. It might throw a clot at any time. I could go off blood thinners, but it would be risky. And I didn't want to risk an embolism.

3. I wanted to prevent further damage to the subclavian vein. It might still be salvageable. If so, it puts me at a lower risk of clots. And if the vein improves, my arm won't fatigue so quickly.

My surgeon thought that it would be a very bad idea to wait. He wanted me to have the surgery as soon as possible. Waiting was just going to worsen the vein damage and the long term outcomes.

4. I also wanted to avoid suffering nerve damage. During an office visit, my surgeon detected a slight bit of weakness in my right little finger. I have trouble keeping the finger spread out, palms up. If I didn't have the surgery or waited even longer, I risked damaging my nerves. I might have ended up with a very weak hand or nerve pain.


My greatest fear in having the surgery was that I'd suffer some kind of serious nerve damage resulting in chronic pain or paralysis. The nightmare scenario is a damaged phrenic nerve. . . . But the risk is very low, depending on who is doing the surgery. My surgeon has never caused serious nerve damage in a case like mine. He does 5-6 of these operations a weak. And he comes highly recommended. In the weeks prior to surgery I had total confidence in his team and little doubt that I would be fine (though I did have a few nightmares about being dead. . . .).

The risk of serious injury is much higher if you have an inexperienced, unpracticed surgeon with a poor track record. Looking around, there are only a couple of surgeons in the US that I'd even consider. If I moved all the way across the country, say to LA, I'd still come back to Dr. Donahue at MGH to do the left side if it needed to be done. . . .

Right now, it doesn't look like the left side will need surgery. We'll know for sure after the venogram.

Maybe this is what you are referring to...
http://www.optechtcs.com/article/S15...003-7/abstract

http://www.sciencedirect.com/science...22294212000037

Yes. You got it. There's a nice PDF linked to from the first page above. Be warned, you might learn more than you really want to know! It's got to be pretty hard to crack through a rib with the equivalent of surgical bolt cutters. . . .

Thanks for the reply.

My thoughts are very close to those lines you wrote. What anticoagulant were you taking, do you still take it? I was on warfarin for 7-8 months and didn't like it. Since I switched to xalerto I have zero issues.

I don't have any neural symptoms I am aware of.

The reason why I asked you about the other side is because I don't want to do the surgery and still be in the position I am better taking thinners as the other side is risky too.

I had MRI and venogram and they can see compression on both sides when I raise my hands. The affected vein is damaged but not that bad - still has around 60% flow.

My surgeon did around 80-100 of these surgeries in his life. I suppose that's a good number for someone to be considered as experienced for this.

I will most likely be making my decision around sept when I am again to see him. My haematologist (who tracks my blood with thinners) says she is perfectly happy with me either doing or not doing the surgery as she doesn't see the problem with taking the thinners other than risk of something like car accident or similar..

Please keep us updated.

How are you feeling right now? As this would be my first surgery ever (if I decide for one) I am very nervous about the anaesthesia, pain management, being paralysed and all that stuff..

I've been on rat poison for a year now. I have no issues. My INR was very stable. I only tested every 5 weeks. Shaving can be a little irritating, but otherwise I never notice.

The worry is both the risks associated with living, car accidents and the like, and God knows what side effects these things might have in the long term. I don't trust them. I've seen some stuff suggesting that Warfarin might lead to significant bone density loss in just a year. . . . I don't know about Xalerto, but I wouldn't trust it either. I'd risk surgery before taking this stuff for 40 years.


Right now, I'm fine. Thanks. I haven't taken so much as a Tylenol for over 3 days. The only pain I feel is if I take a maximal breath and then tighten my abdomen. I'm going to have to work on stretching that out.

I'm sure I could drive without any problems, but I'll wait. . . . I've been going for daily walks of 3 to 6 miles. No issues at all. I did a bunch of pointless body weight squats yesterday just to see. No issues.

I was terrified by the surgery for months, November through April. Then I just stopped worrying. It was a strange moment. . . . In retrospect, I was far too worried. The nTOS cases on this forum were the main cause of concern.

I had a small surgery when I was 17. I hated coming out of sedation. This time it wasn't nearly as bad. The Toradol they gave me tastes awful, but it works very well. My throat was seriously irritated for a few hours, but that's it. They gave me some saline mist via a nebulizer. It helped. The risks of modern anesthesia are very low. It's not like they smash an ether soaked rag on your face until the light goes out of your eyes.

The chances of paralysis are extremely low. The only serious concern is long term pain. But this seems like much more of a problem for nTOS than vTOS. There's some reason to think that the idiopathic nTOS cases shouldn't have this surgery. The horror stories here are mostly, if not exclusively, of that kind.