[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?

[pixified]

I saw several surgeons, one of whom advised the supraclavicular approach. He said that for his patients with venous symptoms he also makes an incision below the collarbone to take out as much behind the vein as possible. I would ask your surgeon about this.

Will you be having a post-op venogram to expand the vein if necessary?

Yes, it will be painful but if you are medicated well you should be fine. Just speak up if your pain isn't managed well.

[Mcmanisport]

Hi! I'm sorry, but when you say "to take out as much behind the vein as possible" what are you referring to being taken out? Rib or muscle? I believe I was told the entire rib would be removed.

I had my second venogram 2 weeks ago and was told by the looks of it the vein will probably need to be expanded with angioplasty during surgery.

One dr told me I'd need 2 days in the hospital and one said about 5-7. How long were you in for, if you dont mind me asking?

THanks!

Originally Posted by pixified

I saw several surgeons, one of whom advised the supraclavicular approach. He said that for his patients with venous symptoms he also makes an incision below the collarbone to take out as much behind the vein as possible. I would ask your surgeon about this.

Will you be having a post-op venogram to expand the vein if necessary?

Yes, it will be painful but if you are medicated well you should be fine. Just speak up if your pain isn't managed well.

[Jomar]

Some have gone home in 2 days but most tend to stay a bit longer, so much of it depends on travel time, home set up, how much help you may have at home, and mostly how you are feeling each day.
Many have said they end up sleeping in a recliner for awhile since getting up from laying flat is strenuous on the upper body/neck muscles.

Either way have lots of pillows or something to make into padding and support for arms and such.

I can't remember if anyone had mentioned a specific preference or reason for the surgical approach location, I think it mostly is whatever that surgeon prefers.

[welshgal32]

hi, i am 3 weeks post op of the removal of my first rib and had the subclavian approach as my consultant prefers this way he believes there is less nerve damage this way.

[pixified]

Originally Posted by Mcmanisport

Hi! I'm sorry, but when you say "to take out as much behind the vein as possible" what are you referring to being taken out? Rib or muscle? I believe I was told the entire rib would be removed.

I had my second venogram 2 weeks ago and was told by the looks of it the vein will probably need to be expanded with angioplasty during surgery.

One dr told me I'd need 2 days in the hospital and one said about 5-7. How long were you in for, if you dont mind me asking?

THanks!

I'm talking mostly about the rib, but the subclavius tendon and costoclavicular ligament can also impinge upon the vein.

I was in the hospital for a little over a day. Thankfully I didn't have any complications so I was able to go home quickly. Although I wouldn't have minded staying hooked up to the PCA for another day or two!

[Sarah21]

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?

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.

[since 1990]

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?

i have experience with under the arm (since 1990) and i can def. say no this procedure...one of my dr.'s states this is now considered outdated and primitive...never heard of thru the chest...heard of thru the neck though...

[Mcmanisport]

Oh no- outdated and primitive? thats not good. I have never heard that, In fact I thought it was more the reverse. My one dr told me the armpit route is how the east coast med schools teach the operation and the neck and or chest is how the west coast schools teach it. And then he said you know, like the whole east coast/west coast rappers thing? I was like oh... ok.
LOL!
Thanks for your advise!

Originally Posted by since 1990

i have experience with under the arm (since 1990) and i can def. say no this procedure...one of my dr.'s states this is now considered outdated and primitive...never heard of thru the chest...heard of thru the neck though...

[Mcmanisport]

Sarah thank you so much for taking the time to tell me a bit of your story. I have never heard of Ehlers Danlos I will have to look it up. Scary about your lung collapsing! I will bring a pillow for the ride, no doubt.

Originally Posted by Sarah21

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.