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Introduction
Hey everybody I'm new to the forum. This seems to be one of the only forums that I can find that is fairly active on the subject of TOS so I figured I would sign up and tell you all a little about my history. In march of 2011 I started having aching pains in my left shoulder from out of nowhere and swelling in my arm, I went to a local clinic and was told it might be something vascular and that I needed to go to the ER immediately. After spending a long night in the ER and after an ultrasound they discovered a clot in my subclavian vein. I was promplty started on lovenox and coumadin and spent a week in the hospital, after which I was released and told to keep taking coumadin and follow up with my doctor. Fast foward to August 2011, I finally got an appointment with a vascular surgeon at UCLA medical center named Dr. Hugh Gelabert who has expertise in the area of TOS and Paget Schroetter's. After some exams I was diagnosed with Paget Schroetter's syndrome and told it was likely due to physical strain that had exacerbated the condition I already had and never knew. On Sept 29 2011 I went in for first rib resection surgery (transaxillary) and 2 weeks after had a venogram and venoplasty done on the subclavian vein. I am currently having some issues with the right side and am having a venogram done tomorrow to see if the same conditions exists there. If anybody has any questions in regards to the surgery, recovery, or any other related things I would be happy to answer them.
John |
Has your left side fully recovered? Dr. Gelabert is great. Good luck with your right side!
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Hi John, Thanks for sharing your TOS story. I do have some questions for you. I have a 16 year old with Venous TOS, just today we were given Dr. Gelabart's at UCLA. We are trying to decide who to go to for Surgery. Our choices are Dr. Sanders in Denver, Dr. Thompson in St. Louis or Dr. Gelabart at UCLA. How long was the surgery, are you happy with the outcome of the surgery? Have you been able to resume life where you left it. What is a venoplasty? Did they remove just the rib or was the muscle removed also? Did you have blood clots before the surgery? Sorry to ask so many questions, I am just so confused. |
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I'm sorry to hear your teen was diagnosed with this so young, I will try to answer your questions as best I can. The surgery was just under 4 hours from the time they wheeled me away until I was out of recovery. They did the rib resection and scalenectomy, while they are in there they can get a better idea of the associated structures that are causing the restriction(fiberous bands etc) and go from there. I did have the blood clot before surgery, before that my symptoms had not been severe enough for me to think anything was really wrong. I have been able to resume all of the activities I was able to do before I got the clot like lifting weights etc, and I have full range of motion. The only lasting effects from the surgery have been a very small spot right behind my armpit and the incision site are still numb but I don't even notice them. In regards to the venoplasty, two weeks after surgery I went back for a venogram to check blood flow and while they are checking they use a balloon on the end of a catheter to expand any of the scarred areas of the subclavian vein that are still slightly restricted. All in all I can say I am very happy with the results and would recommend Dr. Gelabert from my own personal experience. I hope these answers are helpful, if you have more please feel free to ask. I wish all the best for you and your family. John |
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Dr. Ahn told me he used to follow this same approach but will now perform scalenectomy only, in some cases. I think Dr. Ahn would have to strongly believe that your problems are due to scalene hypertrophy only to take this approach. He said that even then, he may have to take the rib once he gets you open and sees everything that is going on. I recommend you undergo Ahn's angiogram/angioplasty test to see if you are truly a candidate for scalenectomy only. I was not a candidate as I failed the scalene block so I didn't bother going through with Ahn's angioplasty. Dr. Angle convinced me to just lose the rib because we don't need it anyway and there was no real advantage to keeping it. Also, women here in LA get the lower ribs removed for cosmetic reasons all the time. If you really don't want to lose the rib you could go to the neurosurgeons who treat this, Dr. Aaron Filler or Dr. Justin Brown. But, what do these guys do if they open you up and find out you need your rib removed, or have some other vascular complication? I heard Filler sends you back to Ahn for a second surgery. I guess Brown would send you over to a vascular surgeon at UCSD. The only surgeons I felt comfortable with cutting me were Gelabert and Angle. My surgery was with Angle. Gelabert and Angle told me Ahn is a great surgeon but his bedside manor simply doesn't compare to the other two. |
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I am actually doing better the past couple of days .The shoulder brace and the neuropathy cream are helping me. Joyce said I was moving bettter too, so all this surgery talk might be premature for me anyway. We'll see. i am going to give it another month or so and then my PT coverage runs out. |
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This is just my opinion (definitely run all of this by Dr. J). You should seek a positive result from the scalane block/botox (I didn't want to go through the angiogram either). You may even want to get an eval by Dr. Ando. It may be possible that you can avoid surgery by working with Joyce and/or Ando. Ando told me surgery is not necessary for TOS in most of the cases he sees. Ask Dr. Jordan about Ando. Ando says he refers many of his TOS patients to Jordan for botox. Hopefully you don't need surgery at all!!! :) Quote:
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