Venous Thoracic Outlet
 

Hi All. New here and have a question or two for all you with TOS experience. After FINALLY being diagnosed with TOS I am scheduled for surgery April 10th. The doc says that that they are not going to fix the subclavian vein as it is compressed beyond repair. There was not clot. Good news is that I have developed numerous collateral veins to assist in circulation. They are going to remove my first rib and resect the anterior scalenes. But, I am wondering if this is even going to help. I just can't understand why they can't repair the portion of vein that is damaged. I suppose they are doing all this the just make more room for the collateral veins. Either way, I just want this over with. 7 weeks out of work and looks like at least 7 more. Too much time to sit around and stew about this. Any words of wisdom are appreciated. Thanks.

I had surgery in Oct 2012 for VTOS, my subclavian vein was replaced with a frozen donor vein. My circulation improved immediately, I would question your Dr about not having a vein replaced.

Also, my vein was occluded with no clot.

Regis

Was it clearly established from imaging that the ant scalene & rib were what caused the vein damage?

If so then addressing those structures will reduce ongoing crowding in the area.

Please be sure you have the best surgeon you can get, just to be sure you have the best outcome possible.

Thanks for the replies. The surgeon did not specifically say what was compressing the vein. She saw where it was (as did I) and stated it was right there where the first rib and scalenes were. I did ask her why they could not bypass the vein, and her answer was something to the effect that too many collateral veins had formed. She stated that the decompression should allow more room for the collaterals. My concern is that if they can't fix the vein (according to her) why am I going to go through this surgery. Almost seems like PT/OT and cortisone injections would relieve the pressure. Maybe I'm wrong.

Oh, and did I mention that I am completely terrified??!!

Usually they remove expendable structures to give more room, sometimes PT just can't do it ( or it may take years & extreme dedication/focus to see the results from it).

Do you know how you might have acquired TOS?

Being a long time firefighter? that could do it, or any injury from the past could factor in too. Sometimes internal scar tissues/adhesions form in the in the areas of past injuries.

You can use the search link or explore other posts here for more surgery information.

One good question to ask is how many of these has surgeon done , like per year or such.. Basically you don't want someone practicing on you.
In case they get in and find more issues than imaging can show. They need to have the experience /skills to fix any surprises.

Well, she said (as well as the doc that did the venogram) that this was chronic and had developed over many years. First, I am a pretty small guy. I have learned to adapt and compensate upper body strength using less that perfect body mechanics especially when I was working as a FF/EMT. Second, I was a scuba instructor for 10 years. That's ten years of breathing through my mouth (using the accessory scalene muscles) and vigorously swimming all day every day. Couple that with a lot of computer use and poor posture. Then, I did some heavy yard work in which I pulled (bad idea) a very heavy trash can behind me. The next day, I pulled a patient up out of bed incorrectly and then after that went to the shooting range and beat the crap out of my shoulder shooting a rifle. 2 days after that is when the symptoms got bad. One doc initially diagnosed me with tendonitis in the scapula region and swelling of the bursa under the collar bone (coincidently right near the brachial plexus).

BTW Jo*Mar....... My surgeon has done NONE since getting out of residency. She said she did a lot in training though. :eek: The brighter side is that the head thoracic surgeon will be co-piloting this procedure.

well, as long as the head t surg is in the room during the op all should be good.
He will take over if needed I hope..

:eek:

All this after reading about PE's, pneumothorax, nerve damage, chest tubes, etc.

Maybe I could just learn to be left handed. Scared would be an understatement at this point.

After reading several threads I am seeing something that I did not connect before. I have also had chronic tightness/pain discomfort around my right scapula. That and since all this happened I have also had discomfort in the lateral pec region. Man, I really screwed something up!

One word of caution, in doing my research it became apparent to me that I needed a Dr who performed this surgery a lot and often. This is a major surgery.

Also, the issue about too many colaterals is the same reason I was not operated, when my injury was first diagnosed. Current Dr said this was not an issue to correct the occuled vein.

Best of luck

Regis

Thanks. Good to know. Problem now is trying to find a doctor here that agrees.

What you describe seem to be common neurogenic symptoms.

In my case I was able to isolate the lateral pec pain to the pec minor and subclavius muscles. When the rib is resected so is the subclavius muscle. After my rib resection surgery and physical therapy, I no longer have the lateral pec or scapular pain which you describe.

You may need to find a therapist which can properly mobilize your remaining ribs to get rid of the scapular pain as rib dysfunction is possibly the cause.

What part of the country are you in, there are many people that can assist you with finding an experienced surgeon if you want?

Regis

+1

If possible, consult several surgeons before choosing and going through with surgery.

Phoenix, AZ. I'm just making call after call. Trying to find surgeons that do this. Problem is each one wants all the info, evals, money, etc. I just want someone that will fix this properly. It took 7 weeks just to convince my doc that this is what I had. I'll be changing PCP after this.

Luckily I'm an Occupational Therapist. Guess that's an upside. Lots of contacts and resources for rehab.

Another forum member in Phoenix is scheduled for surgery with a Dr. Koopot (looks like it is today actually). I am fond of the St. Joseph's health system so I would try and get a consult with him if I were you.

http://www.stjosephs-phx.org/Medical..._Center/199153

Awesome!! Thanks!!

With arterial and venous TOS, outcomes tend to be much better post surgery. Pneumothorax is common during surgery and it is likely that you won't even know it happened if they don't tell you. PE is something they are aware of and will look for- you'll probably be on blood thinners while you're in the hospital to prevent them. Nerve damage isn't really all that common if you have a competent surgeon and chest tubes are just part of the surgery and nothing too scarey.

I just had both sides done at once and am almost 3 months post op. I have other musculoskeletal issues that continue to plague me, but my TOS symptoms are much better and I would do the surgery again.

Deep breath! You'll be okay!

Thank you so much for your words of encouragement!

Curious if any of you had the armpit tightness/discomfort with any of this. Maybe from the swelling, maybe from using my arm differently. Just wondering. Those muscles just seems soooo tight the last two days.

Got me wondering now...... I am curious if that vein is being compressed by the pectoralis minor instead of the first rib (pectoralis minor syndrome). If so, this really changes the game. Had that discomfort, tightness and pain in the side of the chest/armpit area since day one. Hmmmmmm

Yes, I had these symptoms but the real issue was in my thoracic outlet and not under the pec minor. There's something called double (or multiple) crush syndrome. When a nerve is ticked off higher up the line it makes even minor compression lower down the line seem much worse than it actually is. For example, I had the armpit tightness/sensation that a broomstick was being pressed into my armpit and carpal tunnel symptoms. When my first ribs were removed, the other two areas no longer bothered me. It's about figuring out what area is the real issue or if both of them are.

Went to my surgeon to ask about 2 pages of questions today. She said the surgery may do nothing to assist the flow in the collateral veins.........BUT... She said after discussing me with her assistant, if there is no or little improvement after surgery, they want to do a stent . I am so happy that they are going to do this. Maybe there is hope after all!!.

It is my understanding with VTOS that a stent should never be used. Please check this out.

Regis

Like onelessrib stated, a stent should never be used in VTOS and the fact that they are suggesting this isn't a real encouraging sign that they are familiar with TOS at all. :-(

According to the surgeons, the vein never had a DVT. It is actually compressed and has built up scar tissue. I am told this is the reason for the stent. What is the reason for stents no being appropriate? The only negatives I have read about were patients that did not have the decompression/rib resection done.

In my case, the surgery may decrease some compression of the collaterals, but there is no guarantee. The only other option is grafting the vein correct?

I think the stents eventually fail when the 1st rib is intact. I don't know if stents are ok once the rib is removed.

Yeah, that's what I read. Essentially, not removing the first rib and inserting a stent eventually results in the compression (that caused the problems in the first place) of the stent, leading to failure. Once the rib/scalene resection is done however, that should be a different story.

How are you doing post-op?
 

Did you have the surgery? I am 18 days post-op first rib resection. Had it done at Cleveland Clinic by head of vascular surgery. Curious how you are doing if you ended up having surgery.

Been awhile since I have been on here. After essentially firing my first surgeon and cancelling the surgery, I got a second opinion from an experienced surgeon. He wanted to re-do the venogram. Good thing we did. Two days later I went in for the test, and ended up having a heparin drip to try to de-clog the now 5 inch clot. They did angioplasty the next day, and rib/scalene resection 3 days later. Was in the hospital for almost 7 days (good food though). It's been a month now and I feel pretty good. I am still bruised up a bit from the angioplasty and blood thinners but I am getting there. The circulation will never be 100% as it was misdiagnosed for so very long. But, it's much better. Still a bit uncomfortable to sleep, I did quit smoking, and actually feel better than I have in 20 years. The hardest part for me............getting my gut back in synch. That morphine turns your belly into concrete!! I should have been taking Colace the first day in the hospital. You feeling good marlalemons?

I'm so glad the food was good with such a long hospital stay. Congrats on quitting smoking, I know it can be difficult.