I finished my 3 months of coumadin and was referred to a Vascular Surgeon to discuss options for preventing a recurrence in the future. I've been doing a lot of my own research, and as I understand it surgery is the only way to guarantee prevention. So the date is set in November. The procedure will consist of a rib resection (may just shave it back, not completely remove it), releasing the tendon attached to my rib, and releasing the scalenes (muscles). There is no anticipated change in appearance, strength, flexibility, or range of motion once physical therapy is complete. I will be in the hospital for 3 days after the surgery, then out of work for approximately 6 weeks. Once I am cleared by my surgeon I will not have any restrictions on lifestyle, diet, activities, etc.
I will update after I am back to work and life as I knew it.
I hope this information will be helpful to someone in the future. I found few resources from people who actually had Paget-Schroetter's, most of my knowledge comes from scholarly journals. Hope my experience can put someone's mind at ease and help raise awareness!
Was the surgery painful? and how long was the recovery?
ReplyDeleteI am a healthy 18 year old girl, and I have been going through what I believe this is...I ended up getting a PE, and I have been recovering from that. They haven't been moving quickly to figure out what is was that caused it, because they were going to settle for a freak PE....and I thought I was getting better, my arm was going down in size, until a few months later my arm swelled up again. and that happen just this week and I had the PE end of Nov. I went to the ER and I am on coumadin and I don't have another blood clot, but it sure feels like it....But anyway, I am heading to a bigger hospital this wed for more testing, hoping to find some answers. and this is our best guess is that is wrong with me. it is quite the mystery, isn't it?
Anyway I was just trying to find out more about this, and thank you for your blog, it was very helpful!
hmm, meant to reply, but I think i just posted another comment, either way, there's a comment for you below :)
DeleteThe surgery was more painful than I expected, but not immediately... post-op wasn't too bad, but it was very tender for longer than I expected and it took me a good 5-6 weeks to feel like I could do everything again (like exercise).
ReplyDeleteI'm so sorry to hear about your PE! That must have been so scary! It could have been from Paget-Schroetter's, but it's not AS common from the clot to move from your shoulder as it would be if you had a clot, say, in your leg (where there's a lot more muscle movement in that area to dislodge it). But it can definitely happen!
I had an ultra sound (which diagnosed the clot) and a cat-scan (which also saw the clot), but neither were able to see where my subclavian vein had been pinched off to cause the clot. The diagnosis was only confirmed when they did a venous catheterization. I don't know if you're familiar with them, but they basically go in through a vein in your upper arm and using ultrasound and x-ray equipment take a look inside your vein (and remove a clot if necessary) only then could they see where it had been narrowed from the bones and muscles clamping it off. So they used a balloon to open the vein back up. You may want to talk to the doctors about doing a catheterization to make sure this isn't the problem. It should be easier to find someone who knows about this in a bigger hospital, but if you keep getting push-back, keep fighting! Go to someone else until you find someone who will do it! You've already experienced how dangerous this can be, if they can do something to prevent it from happening again then they need to!! Doctors can be wonderful, but you're still the patient and you have to fight for yourself if no one else will. So don't be afraid to speak up!!
Just a head's up... myself and another girl I met who has Paget-Schroetter's both had side-effects from the coumadin- nothing dangerous, just annoying- like migraines and difficulty concentrating. If it happens- you're not imagining it :) we both thought we were crazy!
If you don't mind, keep me updated via this blog so I know how you're making out!
Good luck!!
Hello again!
ReplyDeleteI imagined my comments just got lost in space and never thought to look back till now!
I appreciate what you did with this blog, and how helpful you are in raising awareness for Paget Schroetter Syndrome!
I am interested to hear how you are doing, if you have had any more complications?
I will start from where I left off with my first comment!
After I went to the "bigger hospital" they ran several tests . variations of ultrasounds and discovered that when I would move my arm in a certain way it would indeed pinch my vein...So the dr. told me that he sees this a lot in athletic people who use their arm a lot with using a motion. and that I would need my first rib removed. So after, I forget, like 14 days or something that I had to be off my blood thinners he did the surgery!
It went very very well! No complications during the surgery. I only was in the hospital one night, and recovered at home for like 2 weeks...and the reason for it being that long was because I found out I was allergic to the Oxycontin they gave me, and we didn't figure that out till a week after I had been taking it! But I went to PT to just evaluate where my arm was about a month after surgery and she said I was great, and I had full rotation to my arm, it was just super week because I had hardly used it in 4 months(it is still weak to date)...but I was back to playing volleyball\basketball in less then 2 months with little to no pain...and I have no complications at all since then! I do have pain where my first rib was, but only when it is about to rain.
I find that sometimes I do panic that I am going to have the same thing happen again, I don't know if that is normal...But the other day my shoulder was hurting down to my fingers, and I was feeling anxious,and I was short of breath and had a cough....which is all signs that I had last time that lead to a blood clot! But it turned out that it rained the next day, and that is why it was hurting...but it is strange where your mind will go with things like that!
Anyway, thank you for sharing your story, it sure helped with my story!
So glad to hear you're doing well and back to normal activity!
DeleteI still panic too! My clot happened while I was swimming, so although I love to swim, I've been sticking to the doggie paddle for fear it will happen again! I don't get pain when it rains, but certain shirts, bra straps, even seat belts bother my shoulder and cause pain... sometimes all the way down to my fingers. Unfortunately I think this just may be the new normal for us!
Overall though I'm doing better. I even swam a few laps the other day (but immediately checked my arm to make sure it wasn't blue :))
Thanks for sharing! Best wishes!
Hi,
ReplyDeleteMy sister was recently diagnosed with Paget Schroetter and we're having a difficult time finding a surgeon who will recommend, let alone perform, surgery for her condition. In fact, one told us that 86% of surgeons opt for the conservative approach (meaning Coumadin). Did you have a similarly difficult time finding a surgeon who would perform surgery? Why are they so reluctant to do it if it is the only real treatment? My sister is 28 years old and lives in Tulsa. The nearest doctor who seems willing to perform the surgery is in St. Louis.
Any insight as to how and why doctors decide to correct the condition surgically would be greatly appreciated.
Thank you!
Sorry to hear about your sister, glad to hear it was diagnosed though!
DeleteIt is standard to be on coumadin after the clot is removed by cardiac catheterization. If it is small enough, the body could break it down on its own, but subclavian clots are usually quite large. I was giving myself 2 lovenox (blood thinner) injections until the coumadin level was therapeutic.
You're right though, the standard treatment is removal of the clot, anticoagulation (coumadin), then prevention of further clots (which is either to release the tendons and muscles around the vein, or to remove the first rib). The literature I've found has been in agreement on that. This condition is a musculoskeletal problem (we're built tight in the shoulders) and will not be prevented with medications unless it's accompanied by a clotting disorder.
Look for vascular surgeons, they are used to working within and around vessels and should be quite comfortable with this procedure if they're up on the latest research. Most major medical centers should have a physician who is willing to do the procedure. I'm sorry there's been so much difficulty though.
Please keep us updated on her progress! I'll be keeping her in my thoughts in hopes for a good surgeon!
Our town didnt even know what it was....keep searching in the vascular surgeons, we ended up going to a university hospital where they do at least one a week....keep searching....when we found a surgeon that knew alot about PSS it was such a relief, even the way they do ultrasounds etc are so different...maybe you could call UW Wisconsin hospital see who they could recomment..my daughter had Dr. Acher...sure hope you find a good surgeon for your sister.....
ReplyDeleteHe knew she needed surgery otherwise it would keep happening, because when she raised her arm over her head there was NO pressure..we knew Mackenzie didnt want to live with the fear of another, or having to stay on blood thinners her whole life.....it was just a physical problem....there are risks in the surgery...one young man had them ALL the same week Kenz had her surgery.....Mackenzie had none....
ReplyDeleteI completely agree with your two above posts! I think in general the benefits out weigh the risks, but some people get the short end of the stick. Larger medical centers are the way to go! Keep looking! :)
DeleteThanks for all your advice. We've recently spoken to Dr. Brantigan in Denver. He works at the University of Colorado and specializes in thoracic outlet syndrome. We've also spoken to Dr. Thompson's office in St. Louis (affiliated with Washington University). Have any of you seen either of these doctors?
ReplyDeleteI'm glad you found someone! I have not seen either of those physicians, I'm in Philadelphia so I've been working with the docs out here. I just quickly looked them both up- both board certified in vascular surgery and are affiliated with large hospitals... both sound good!
DeleteSince you'll have to travel quite a bit to see them, maybe narrow it down by infection rates and number of Paget Schroetter/Thoracic Outlet surgeries they have performed to date. Another great question is will they try to leave the rib if possible? I was able to keep my rib (shorter recovery time, less pain) because my surgeon released tendons and muscles then moved my arm around on the OR table to see if that took care of the compression or if he had to continue with the rib.
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ReplyDeleteMayo clinic in Minnesota has great surgeons if you live close to Minnesota. I currently live in NC and have a great surgeon Dr. Williamson in Asheville. Surgery is only way to ensure won't happen again even with blood thinners it can still clamp blood flow and cause same issues so keep fighting to get permanent help. Good luck ladies and gents.
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