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First rib resection due to DVT

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Simurgh
Simurgh

Hello to you all, 

 

I need advice from good people here J 

 

Here is my story.

I am a health 27 male.

 

Last year, after training for a half-marathon I experienced some pain in my shoulder area. At the time I ignored the symptoms and continued with the training. 

 

This continued till one night my arm went purple and very swollen. I went to A&E and was diagnosed with subclavian DVT. They put me on Warfarin and sent me home. The next few months I continued with taking Warfarin and my arm improved pretty much to normal appearance within 2-3 months. After they checked all the blood work I did (and all was ok), they sent me to do MRI scan with the dye injected. 

 

After that I saw a vascular team once and they said I have significant narrowing of the subclavian veins only when I raised my hands. Both arteries look fine. This is the case on both sides. After that they offered me a surgery, but didn't really push for it. They said it is surgery (first rib resection on both sides) or I would need to down my training and to be careful with any future intense physical activity + to keep taking warfarin.

 

I must say I don't have any pain or any other significant symptoms. Sometimes when I run (I still do), I feel some pain in my shoulder area but it's not too bad. (3 or 4 out of 10).

 

Reading all the experiences on this forum, I found that most people do the surgery because of the pain or other symptoms. I didn't have any symptoms apart from DVT and I have very occasional pain in shoulder area.

 

What are you thoughts on this? I am mostly afraid that I would feel much worse after the surgery than now. But on the other hand I don't want to risk getting another clot or bleeding due to taking warfarin. 

 

Any good surgeons dealing with vascular TOS in UK?

0 likes, 22 replies

22 Replies

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  • Simurgh
    Simurgh

    Posted

    Just to add. They didn't see cervical rib or fibrious band. 
  • a26543
    a26543 Simurgh

    Posted

    Well I've just had the surgery 10 days ago and it's very tough. I'm young and fit and was experiencing a lot of pain and numbness down my arm for over a year now. I was misdiagnosed several times and then found the Head of Vascular Surgery at a very distinguished hospital who teaches this procedure and writes papers on it. He told me I needed to have the surgery in order to stop the hardening of the artery and later on to have to replace the artery after lack of blood flow. I had significant blood flow problems and no pulse on that arm when I moved it any way.  The surgery was far more than I had bargained for. They ended up taking my rib out. Also they punctured my lung while doing this which is a common thing that happens which caused incredible pain and fluid in my lungs. The pain in unexplainable. Your neck burns and hardens over the site. You can feel the nerves trying to mend themselves as several times per day I get lightning bolt pain down my shoulder, elbow and wrist. I'm hoping that this gets a whole lot better in another week. It's been a long road when you are used to being active and moving all the time. 

    The good news is I have a restored full pulse on that arm now. No pain like before or numbness. My hand used to always be cold and now it's warm. It did work but wow....what a recovery! Can't wait to feel normal agin.

    • Simurgh
      Simurgh a26543

      Posted

      Dear a26543,

      Thank you so much for sharing your experience. I really hope you will be getting better soon and active. I am sure you will!

      May I aks you in which hospital did you have the surgery, and if you know the doctor's name? I am being seen in St Georges Hospital. They have quite a good team there.

    • a26543
      a26543 Simurgh

      Posted

      I live in Canada so I doubt that will help you. This doctor has also worked and set up this procedure in Saudi Arabia as well.
    • Simurgh
      Simurgh a26543

      Posted

      I see. Well your experience is useful in anycase.

      I dont have the problem with the artery but veins. My arm doesn't lose pulse. Surgeon recommended the surgery but said it isnt imperative or urgent.

      I am still making my mind. Its a difficult descision as I dont have any pain, but I need to stay on blood thinners till I decide.

    • a26543
      a26543 Simurgh

      Posted

      Take your time then. Until you have lots of time to be down and out. It's a longer recovery than I expected. And really people have to do everything for you. No lifting, movement is hard and pain is super tough. 
    • Simurgh
      Simurgh a26543

      Posted

      Thanks for the advice. Keep us updated! hang in there. I am sure it will be much better soon.
    • a26543
      a26543 Simurgh

      Posted

      I certainly hope so. Went back to emerge tonight with a fever and my kings not feeling great. There is a tremendous amount of fluid in the lung that they knicked. Tomorrow am is a CT scan to make sure it's not blood clots. Ughgh. I'm tired of this. More blood thinner injections tonight. They are dreadful.
    • a26543
      a26543

      Posted

      Ooops lungs 
    • eddie25439
      eddie25439 a26543

      Posted

      Hi,

      I see that you had this surgery done about ten months ago, mine was almost six months ago and I still randomly (once a week) feel a sharp shooting pain from chest area down to my elbow (where they went in for the angioplasty), sometimes the pain is just in the chest area, and sometimes in a random area so I was wondering if your pain was the same and if it was did subside with time?

      Best,

    • Jules100201
      Jules100201 Simurgh

      Posted

      Hi, I am new and just searching through discussion so on TOS. I realise your post was a year ago but I have just had first rib resection and scalenotomy two weeks ago after spending nearly a year trying to get a diagnosis for arterial and venous TOS.  Once I was diagnosed it was never suggested to me that I should be on blood thinners whilst waiting for surgery but then I have not had a DVT so I'm not sure if that is the difference.  My surgeon is currently based in Papworth, Cambridgeshire but he is moving to UCH in London next month.  St George's is a great hospital so I am sure you are receiving good care.  It seems to me that not many hospitals have consultants that deal with TOS and it varies as to which speciality deals with it from vascular to thoracic, orthopaedic and plastic.  I stuck with thoracic as I didn't really fancy any of the other specialities messing around in my chest with the risk of pneumothorax on the cards.  Luckily the only complication I had with my surgery was my reaction to morphine and I now have a radial pulse - just waiting for everything else to settle.  Let me know if you need any other info but one of the big take home messages I had from my consultant was to never wear a rucksack or carry any bags on my shoulders. Take care
    • Simurgh
      Simurgh Jules100201

      Posted

      Dear Jules, 

      Thank you very much for your post. Much appreciated! Could you tell me who was the surgeon who did the surgery? UCH is very close to the place I work and I can maybe seek to ask for the opinion. 

      Basically I had two suregons seeing me. First one was in Royal London Hospital and they suggested a surgery. I was a bit reluctant as they said they don't do too much of those (maybe up to 10 per year). Then I reach to Dr Ian Loftus who I found to have a specific interest in TOS and he himself did over 100 of TOS surgeries. He suggested I don't do anything at the moment as my collateral veins have a bit unusual pattern and there is some risk to damage them if they do rib resection. Also my vein is patent and the stress is only in certain positions. 

      I myself didn't had a lot of problems. Sometimes when I run more than often I get some tingling in my shoulder area and some pain, but it usually goes away in a day or two. 

      I am still on Xalerto and thanks God it works great for me. Since I begin to take it (almost 2 years ago) I had zero issues with it. I didn't like Warfarin. 

      So yeah.. for me it's a bit of a waiting game. There is no concensious on the treatment. I do understand the most important thing is to have someone experienced to deal with it. 

    • Jules100201
      Jules100201 Simurgh

      Posted

      Hi, my consultant is Marco Scarci, but it sounds to me like you can avoid surgery.  I am not sure how many cases Marco has done but it won't be anywhere near 100.
  • sand.county
    sand.county Simurgh

    Posted

    I don't know if this is still active. I am 36, male and active. I am a cyclisst and runner. I was recently discovered to have an upper extremity venous DVT (left side, non-dominant). I have been in a state of anxiety over this. It was discovered early; I basically went to the ER the first day I felt something was not right. My brother is a cardiologist and after describing to him what I was feeling/seeing, he pushed me to ask for an ultrasound, convinced as he was that it was a clot. In the ER, I was not intervened surgically (catheter lys), but rather started on a somewhat conservative anti-coagulation treatment––I wasn't even put on the full dose of lovanox. My blood also never really reached theraputic INR levels on warfarin (never got above 1.6), but my arm got better nonetheless. In two weeks it was back, kind of. Sometimes it still turns red, and I felt nerve-twitches often during the first 2 weeks. I am now on eliquis and it all looks ok, and feels ok mostly. I never stopped running throughout this entire situation, but I have stopped cycling as it does seem to "upset" my arm. I am super nervous, however, moving forward, mostly because I do not want to get the rib surgerey, but I also don't want to give up cycling (I've been riding since a teenager). But I'm also unsure if anything I do will aggravate a recurrence of the clot. I'm wondering if you have had success with manual/physical therapy for this? I'm wanting to know more about the latter. There seems to be a lot of literature for TOS and therapy, though from the perspective of nervous TOS not venous.
    • Simurgh
      Simurgh sand.county

      Posted

      Dear Sand, 

      I was diagnosed almost 2.5 years ago. I have gone back and forth should I do the surgery. At the end I decided not to do the surgery for time being. 

      I don't have any major sympthoms. My arm feels fine 95% of time. I do run quite often, but I don't lift weights. I do excercise withouth lifting from time to time. 

      Having said all that, I stayed on blood thinners all this time. I switched from Warfarin to Xalerto and that was great for me. No side-effects at all, I can eat whatever I want and generally feel better on it. 

      My hematologist is fine with me taking xalerto long term. I understand the risk associated with it (bleeding + there is no quick anti-dote for xalerto). 

      Anyhow for me the decision was not to do the surgery as there is non-zero chance I would be worse after the surgery (nerve damage, vein damage, etc..) 

      My advice is to try not to stress too much over it. Belive me, I KNOW that's not easy. Chances are you are going to be fine either you decide to do the surgery or stay on blood thinners. I recommend you get the second opionon from vascular surgeon and also do venogram. That will tell wheter you have TOS or not. Also it will tell if your artery is fine. If artery is compressed that is the most serious problem.

      "Excellent news" for you is that you don't have pain that is assocated with nTOS. People tend to have much more problems with nerves compared to veins. 

      Take it easy - day by day, week by week. It will be fine. 

      Let me know if you have more Qs.. 

       

    • victoria93724
      victoria93724 sand.county

      Posted

      How are things going now sand. county? I am also a runner and am very active. I suffered a DVT in subclavian vein in April 2015, and am still on thinners. My shoulder/neck pain started to worsen when I started getting into triathlons, and eventually ended up with a subclavian DVT while travelling. I have been on Xarelto since ( they took me off after 4 mths but I ended up with small clots while travelling again so they put me back on it ). Basically the discussion of surgery has been ongoing and I decided to have it done on Jan 11, 2017 so it's coming up! I'm super nervous, and hoping I'm making the right choice as I want to continue to be active. The pain I experience is bearable, but it does affect my daily life as I feel that it holds me back. Also, I am an optometrist and am doing alot of overhead motion through the day. I have only been practicing 4 years, and want to have a long career, so the doctors felt this was the best option. I'm just wondering your progress.

      Thanks, Victoria

      Victoria

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