Quote:
Originally Posted by Mcmanisport
As I have posted before, I was diagnosed with Paget Schroetter disease or Venous TOS from a Subclavian DVT incident back in the summer.
I have had multiple opinions from Drs that are very familiar with the surgery (rib resection and scalenectomy).
There are two docs I feel comfortable with, I am trying to decide which to go with. The first does about 30 of these per year and goes in through the armpit. The second does about 12 per year and goes in through the chest. Any opinions as to which route is better?
Also, both Drs say recovery is not too bad, a little painful at first but my pain will be managed well. From what I have read here on this forum it seems they are underestimating the painfulness, yes?
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I had a first reb resection this summer and my surgeon went in under my armpit. I am lucky to live near Boston because the first cardiologist in Rhode Island I was sent to for TOS said that if I didn't live near Boston then he would be having my fly there anyways because he wouldn't let anyone else do the surgery. I was not crazy about the personality of my surgeon, but that's not important, I think he was an excellent surgeon and he goes in under the armpit. My scar is about 4 inches long. It was an extremely clean slice as well, which completely amazed me given where they have to go to get the rib off. I have Ehlers Danlos symdrome as well so my scar has widened but if it weren't for this issue then the scar would be easily concealed.
I'm not going to lie to you, I think surgeons do underestimate the pain levels before surgery as to not scare you. It is very painful so be sure to let the staff know if you are uncomfortable. However, as is a legitimate risk with this type of surgery, my lung collapsed during surgery so I also had a chest tube when I woke up. This was in for 2 days and I found my pain instantly more manageable after the chest tube was removed. I was in the hospital for a total of 4 days. The surgeon did say after the surgery that a 1st rib resection is more painful than open heart surgery so be prepared to take it easy and not stress yourself out. I am a workaholic and tried to take off the lower estimate of time needed. I ended up being out of work for 6 weeks. As others say be sure to have lots of pillows for when you sleep. In fact I had read somewhere before surgery to have a pillow for the first car ride home. This was great advice because you are much more comfortable when your arm is resting on a pillow rather than hanging or just in a sling.
Please don't let any of this scare you. The surgery is tough BUT all of my symptoms have subsided on the side of surgery. There is strange sensation on my underarm but this is completely manageable and it is a weird feeling at times, not a painful one. Before surgery my arm would tingle, lose feeling, turn blue, feel disconnected, painful and I was having severe chest pain if I moved my arm as a result of blood flow being blocked in both directions since I have venous and arterial TOS. My quality of life has greatly improved so although there is no sure thing when it comes to surgery if you are confident in your surgeon you should be okay either way.