Hi I'm an Aussie 35 year old guy with diagnosed TOS. 1st and 2nd ribs are fused so in a couple of weeks the vascular surgeon is going to cut them out. The subclavian vein gets completely occluded, I don't even need to raise my arm to lose pulse - just pull back the left shoulder and it's enough lol. Having said that though it seems tolerable apart from waking up every morning with a numb arm etc. There is a pulsating mass just above my collarbone where the docs say it's being pushed out due to the bone/fused formation.

After reading the horror stories in here it seems like most things get worse after surgery from scar tissue and general weakness etc, hence it's got me wondering if having the op at all is such a good idea if things are going to be like that. Would things get worse if I was to just stay like now? I mean seriously this isn't all that bad compared to what I'm hearing can occur afterwards, can anyone be kind enough to grant some helpful advice because I'm feeling quite apprehensive about the whole thing.

Btw I just got out of hospital a few months back from thyroid cancer surgery, basically they removed the whole thing but given that the thyroid resides just below the skin of the neck it was rather non-invasive and tbh it's nothing compared to the TOS op. Apart from that I'm strong and healthy, no problems at all.

You and your doctor know your case best. I would caution you against refusing surgery when you have venous/arterial involvement because of the risk of gangrene, stroke, and pulmonary embolism. However, the decision is ultimately yours. Make sure you have a surgeon who is really well-versed in Thoracic Outlet Decompression and your odds of having a really good outcome are high as you have a vascular form of TOS and a bony abnormality Those factors as well as not being in a lot of pain/medicated for pain prior to surgery and being younger are on your side.
I just had the surgery myself and though I'm not 100% yet at 7 1/2 weeks post op, my arm symptoms are all but gone. I still have a ways to go but my issues have been more centered around my post-op care than the actual surgery itself. I also have other medical issues that contribute to my symptomology.
I wish you the best of luck! And make sure you know what the risks are of refusing surgery. That is what ultimately pushed me to take this seriously as, at 25 and the mother of a 1 year old, I should make sure I stick around for awhile.

Hello Taki,
Since you have an obvious issue showing on imaging, and mostly a vascular problem, surgery usually has a much better outcome.

With a skilled & expert surgeon of course..

Did the dr mention the risk of clots with vein occlusion?

Usually it is the neuro type TOS with no clear cut cause that makes less than maximum post op outcome.

Or a less than stellar surgeon.
Or just plain bad luck.

Thanks to all you guys for useful replies I didn't realize with bony/vein issues the surgery is more straightforward so thanks for that. As for the neuro thing I can't remember fully but think a nerve is involved since my left hand is numb. Actually when I was first diagnosed they thought it was carpel tunnel until investigating further.

After surgery and healing will I be right to do push-ups etc do you guys think?

It's not that the surgery is more straightforward or easier, it's that there is a clear diagnosis in those cases. You can *see* artery/vein involvement, you can't see nerve involvement. So people who just have NTOS could have one of many diagnoses and it's a matter of determining which one it really is. So some people with bad outcomes from NTOS surgery never actually had TOS at all. Also, if symptomology is from lack of free blood flow and you restore that blood flow, things are corrected almost immediately where nerve involvement=very slow healing and possible permanent damage. When you have a bony abnormality that is another thing you can see and recognize before going into surgery where other people the surgeons just guess that there must be an issue with something and just remove muscle, scar tissue, fibrous bands and whatever abnormal things they find in hopes it decompresses the area.
After healing from surgery, you will probably never want to do another push up. You'll have to be careful not to develop scar tissue in the area and I've been told by PT to never do anything even resembling a push up for the rest of my life. You'll find out what your particular restrictions are, but it's becoming apparent that I will not be able to bring in all the grocery bags at once, I won't be able to do overhead work and I won't be able to do other repetitive activities for any length of time. Others heal better- especially the ones without chronic pain issues. I don't say this to scare you! It could be different in your case, but know that TOS is a rough thing to have and there's likely certain restrictions you will always have to prevent it from reoccurring and to avoid pain.

Thanks for the advice, think I prefer life as it currently is

I'd like to add a word of caution. I have no doubt that you do "prefer life as it currently is". However there is no guarantee that the situation will remain so rosy. My 1st and 2nd ribs are (were) fused, and your symptoms largely match what I experienced during the 1st year of discomfort related to TOS. Things got progressively worse for me from that point, until the surgical option seemed heaven-sent as it represented my last chance at restoring my arm to a degree that it would be able to perform even the most basic activities.

I'm just 2.5 weeks post-op so I cant add any details from personal experience (yet). But my surgeon was far more optimistic when describing the possible outcomes than a lot of the stories I've read on this site. Don't despair if that's what things come to. If you do opt out of surgery make sure not to ignore any additional symptoms that may develop over time.

-Ben

Thanks for your input Ben. What really annoys me is that both vascular surgeons I've consulted say that things will be fine and rosy again after surgery and like I'll easily be back to work within a few weeks etc etc. Even the doctor and the physio said the same thing. Then I come here and read the real-life accounts that some are in serious pain etc after 3 months and even 6, furthermore that in some cases normality is never restored and it puts me in a double mind, I would tend to believe the real accounts over the 'optimistic' surgeons who basically run a business where I'm their potential customer.

Further weighing on my mind is the size of the fused ribs - that will require a fair bit of cutting and gap to get access and get them out, surely that has to present bigger scar tissue problems and complications as well.

How about you Ben did they need to cut away a lot more given it was 2 ribs and how do you feel right now? What did they advise you to do about the scar tissue??

I second this. At the very least, talk to your doctor about your clotting risks. You may not even know you have one forming and those can get very serious, very quickly. Vascular forms of TOS are usually not something to ignore.

I really think that the ones that had very successful surgeries are usually not posting on forums ..

This info is in our useful sticky thread-
pubmed - 2009 surgery results study

[From PUBMED.
[J Vasc Surg. 2009 Mar;49(3):630-5; discussion 635-7. Epub 2009 Jan 14.
Surgical intervention for thoracic outlet syndrome improves patient's quality of life.
Chang DC, Rotellini-Coltvet LA, Mukherjee D, De Leon R, Freischlag JA.
Source

Division of Vascular Surgery, Department of Surgery, Johns Hopkins Medical Institutions, Baltimore, MD 21205, USA.
Abstract
OBJECTIVE:

To assess long-term quality of life outcomes in patients following transaxillary first-rib resection and scalenectomy for thoracic outlet syndrome (TOS).
METHODS:

This was a prospective observational study using the Short-Form 12 (SF-12) and Disability of Arm, Hand, and Shoulder (DASH) instruments between February 2005 and March 2008 in patients with TOS presenting to an academic medical center for preoperative surgical evaluation after failing physical therapy protocol.
Surveys were conducted preoperatively and then again at 3, 6, 12, 18, and 24 months after surgery. Longitudinal data analysis was performed with population-averaged models using generalized estimating equations (GEE) method for average rate of recovery. Kaplan-Meier method was used to analyze time to return to work.
RESULTS:

A total of 70 out of 105 eligible patients (66.7%) completed the study protocol (44 neurogenic; 26 venous), returning 243 valid SF-12 surveys (162 neurogenic; 81 venous) and 188 valid DASH surveys (124 neurogenic; 64 venous).
Half (50%) of the neurogenic patients and 77% of the venous patients returned to full-time work or activity within the study follow-up, with half of them doing so by 4 months and 75% of them by 5 months. There was no statistically significant difference in return to work between the neurogenic or venous patients. Neurogenic patients had baseline SF-12 Physical Component Scores (PCS) similar to chronic heart failure patients and were significantly worse than venous patients (33.8 vs 43.6, P < .001).

In contrast, no difference existed in Mental Component Scores (MCS) (44.5 vs 43.5, P = .78). In follow-up, on average, PCS scores for neurogenic patients improved 0.24 points (P < .001) and MCS scores improved 0.15 points per month (P = .01); while PCS scores for venous patients improved 0.40 points (P = .004) and MCS scores improved 0.55 points per month (P < .001).
Additionally, neurogenic patients had baseline DASH scores that were similar to patients with rotator cuff tears, and they were also significantly worse than venous patients (50.2 vs 25.0, P < .001). DASH scores, on average, also improved 0.85 points (P < .001) for neurogenic patients and 0.81 points (P < .001) for venous patients per month.
CONCLUSION:

The use of the SF-12 and DASH instruments in patients with TOS demonstrated significant improvement in patients postoperatively. Venous TOS patients typically improved both physical and mental scores in shorter periods of time than their neurogenic counterparts.
Neurogenic and venous TOS patients returned to full-time work/activity within the same length of time postoperatively. However, neurogenic patients required more secondary interventions. We conclude that in appropriately selected patients with either neurogenic or venous TOS, surgical intervention can improve their quality of life over time.

PMID:
19147319
[PubMed - indexed for MEDLINE] ]
http://www.ncbi.nlm.nih.gov/pubmed/19147319]