Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

Jedeye, Thanks for sharing. Wholehearted agreement with the sentiments that conservative, diligent care is the place to start.

Phoebe, I consider myself to be a "high-level athlete", having been a very competitive collegiate NCAA athlete. Sounds to me like you're doc knows what he's talking about and you've explored conservative options, yes? If so, don't worry! Those 16 weeks will fly by in a blink. After ~16 weeks, I was back to bouldering close to my previous limit.

All, as thread initiator, I feel a certain responsibility to also reiterate my respect for the conservative approach, and not overtly encourage surgery unless it's necessary. I think I've had enough input on this thread, and the things that have been the most helpful for my recovery -- distractions, motivations, physical therapy, etc... -- have all been mentioned. Thank you for sharing your stories. It's been very therapeutic for me to share my own and hear yours.

I encourage continued mutual support, here or elsewhere!

Strength to Strength.

Cheers!

(sorry for the essay)

I had a right first rib resection about 3 and half weeks ago for neurogenic TOS . Just a little background: it was quite a journey getting diagnosed, approved for the surgery, on top of constant struggling with my insurance company but I finally got it scheduled. My symptoms included searing pain from my neck, under my collarbone (where the worst pain was) and down my arm to my fingers as well as occasional numbness. This had been going on for years and I had actually had a biceps tenodesis surgery because that's what a shoulder specialist though it was (obviously it wasn't). One day as I was hanging clothes, my arm went completely numb and just fell limp at my side which is when I went to a nueorlogist who directed me to a Thoracic Specialist at NY Presbyterian/Columbia Medical.

Anyway, when the surgeon went in he said it was much worse than he had anticipated as everything was so tightly compacted together in the area that he ended up taking out the entire rib (some people only get a portion of the rib removed) a few muscles and ligaments too. I'm not going to sugarcoat this because we're all adults here... no one could have prepared me for the kind of pain I felt coming out of surgery. Now, I'm not new to pain (I've had 4 previous surgeries, broken numerous bones, etc...) but it was so bad that I could not move any part of my body. They could not lift the back of the hospital bed at all as I would scream in pain at the slightest movement. I was on the highest dose of IV dilauded and even with that, I couldn't eat, sleep, breath, I could barely blink without pain. I would wake up every hour screaming

Even though you are normally sent home the next day, I spent 9 days in the hospital. As it turns out, I had multiple post-op complications. It started with a hematoma (an abnormal collection of blood outside of a blood vessel from a burst capillary, blood vessel, artery, etc..) which was compressing my lung making it very painful to take in air. Then I got pneumonia in my lung that was making it very hard to breathe. And then the kicker, I had a Pericardial Effusion (excess fluid between the heart and the sac surrounding the heart). Now normally, this isn't a big deal and sometimes doesn't have any harmful effect on you but because my body was in such rough shape, my heart was effected. 

I would go into tachycardia (heart beat over 100 bpm) every time I stood up. Every time I would stand up right my heart rate would spike from 80 to about 150 in a matter of seconds. I was seen by about 10 cardiologists at the hospital who couldn't agree on a plan to combat this as they weren't sure if it was being caused by the fluid around my heart or something else. I had so many tests done within that week and still no concrete answer.

They finally decided to drain the fluid around my heart with a chest tube but then decided against it at the last moment as I was in pretty rough shape and it was too risky because they weren't sure how thick the fluid was and if it would drain well. They then told me that I would just have to take it easy and that I can't be alone as of now as they're not sure if my tachycardia could cause something more dangerous. To this day, every time I stand up my heart rate skyrockets.

I'm only 20 and will have to see a cardiologist twice a year from now on because of this mystery.

There's still a lot of pain but nothing like before. Half of my arm is still completely numb from the nerve damage. There is still some fluid around my lung which makes it a little harder to breathe but it is slowly clearing up. Every time I cough or sneeze, it feels like someones taking a bat to my rib cage.I realize I'm only about a month out of surgery so nothing is set in stone as of now. I expect (and hope) a lot of these symptoms will subside eventually. 

Even though this process, surgery and recovery was an absolute nightmare, it will all have been completely worth it if it can get rid of the pain I was experiencing before. The goal of this post is not to scare people away from this surgery, it's to let you know that it's not a black and white procedure. Granted these complications only happen to a very small percentage of people, they can still happen and while the post-op pain was brutal, it's not forever and I would do it again if I had to. 

Side note: thank you so much for creating this forum. It feels really good to have people know what living with TOS is like and to not feel so alone dealing with it. :)

I am 60 and have had this for decades but after the surgeon was done that was it. 10 times worse than when I started. I thought this was the answer and for weeks after both left and right TOS, pec minor tendon release, no one will help me. So I get the fact it was neurovascular and had extra scalene muscle most people don't have, neurovascular TOS looked like it was working so did the right side due to subclavian artery compression. Still left to the wolves. Every time a surgeon does his thing, that's it. But now my hands are discolored again and swelling and I can't get past the "assistant". I think the pain mgmt doctor was not the one he would have referred me to so I can't get through to him I will never implant something in my spine when there is obviously some adhesion or nerve damage but at least he can do is run some tests. I mean I am sure if he had to do surgery again he would probably pay attention but you are so young I feel bad for you. I don't know what I will do but am "burned" from middle of thorax to under my chin and across my upper back but only after the second surgery. I feel like I was made a guinea pig and I have to just wait it out. I will use Patients without Borders and leave the US because I can't get a doctor that doesn't want to run up the bills and when they get all they can they dump you. Try holistic measures, CBD oil that is cold pressed and frankincense or you will never be the same if they get you starterd on Lyrica or neurontin. Although my upper body strength hasn't been there half my life I at least had a life. Good luck to you. Wanted to add watch the drugs. Most will put you on HBP, anti depressant like Cymbalta for "Pain" and they all cause horrible side effects. You had a bad deal though. There should have been a drainage tube put in before surgery. They should have kept it there so lymphatic fluid could drain properly. You would never have had the pericardial fluid build up like that.Most thoracic surgeries always put a drain tube in to avoid a second surgery. So very sorry you had to go through that. I know numbness bothers you but feeling the nerve pain is worse. Just look up all drugs, where they are manufactured, what fillers they use, and if you have to take three to offset side effects from one. There are many natural products but If it were not for the vascular issue I would not have done it. They never see people that have gone through this much pain this many years with so many wrong diagnosis' but I just want help. I don't want anything but relief. I would like to not drop everything or feel so spastic so you have youth on your side but get second opinions. All your doctors look up Dollars for docs. I was desperate and couldn't work and now I will never be able to even ride in a car. I don't want to see the same for someone as young as you. I have a strong pain threshold, natural childbirth, passed my share of kidney stones , but nothing compares to burning nerve pain that doesn't go away. See if you can get a cold ice machine. One was given to me and insurance rarely pays but I got it two days ago from a friend and it beats the leaky iceberg like ice packs. The tens unit only help so long and not for chronic pain. Later on try a muscle stimulator as it will help fluid move and keep you in shape but ask your doctor first. I got a cheap one At a drugstore and still can't get one ordered for me that's decent but 10 weeks out 2nd surgery and no return calls so I assume it won't hurt but I'm a bit of a cynic at my age and have seen too much. Keep reading med journals and if interested I will share some natural remedies that may help. 

Linda Kyle wrote:

I am 60 and have had this for decades but after the surgeon was done that was it. 10 times worse than when I started. I thought this was the answer and for weeks after both left and right TOS, pec minor tendon release, no one will help me. So I get the fact it was neurovascular and had extra scalene muscle most people don't have, neurovascular TOS looked like it was working so did the right side due to subclavian artery compression. Still left to the wolves. Every time a surgeon does his thing, that's it. But now my hands are discolored again and swelling and I can't get past the "assistant". I think the pain mgmt doctor was not the one he would have referred me to so I can't get through to him I will never implant something in my spine when there is obviously some adhesion or nerve damage but at least he can do is run some tests. I mean I am sure if he had to do surgery again he would probably pay attention but you are so young I feel bad for you. I don't know what I will do but am "burned" from middle of thorax to under my chin and across my upper back but only after the second surgery. I feel like I was made a guinea pig and I have to just wait it out. I will use Patients without Borders and leave the US because I can't get a doctor that doesn't want to run up the bills and when they get all they can they dump you. Try holistic measures, CBD oil that is cold pressed and frankincense or you will never be the same if they get you starterd on Lyrica or neurontin. Although my upper body strength hasn't been there half my life I at least had a life. Good luck to you. Wanted to add watch the drugs. Most will put you on HBP, anti depressant like Cymbalta for "Pain" and they all cause horrible side effects. You had a bad deal though. There should have been a drainage tube put in before surgery. They should have kept it there so lymphatic fluid could drain properly. You would never have had the pericardial fluid build up like that.Most thoracic surgeries always put a drain tube in to avoid a second surgery. So very sorry you had to go through that. I know numbness bothers you but feeling the nerve pain is worse. Just look up all drugs, where they are manufactured, what fillers they use, and if you have to take three to offset side effects from one. There are many natural products but If it were not for the vascular issue I would not have done it. They never see people that have gone through this much pain this many years with so many wrong diagnosis' but I just want help. I don't want anything but relief. I would like to not drop everything or feel so spastic so you have youth on your side but get second opinions. All your doctors look up Dollars for docs. I was desperate and couldn't work and now I will never be able to even ride in a car. I don't want to see the same for someone as young as you. I have a strong pain threshold, natural childbirth, passed my share of kidney stones , but nothing compares to burning nerve pain that doesn't go away. See if you can get a cold ice machine. One was given to me and insurance rarely pays but I got it two days ago from a friend and it beats the leaky iceberg like ice packs. The tens unit only help so long and not for chronic pain. Later on try a muscle stimulator as it will help fluid move and keep you in shape but ask your doctor first. I got a cheap one At a drugstore and still can't get one ordered for me that's decent but 10 weeks out 2nd surgery and no return calls so I assume it won't hurt but I'm a bit of a cynic at my age and have seen too much. Keep reading med journals and if interested I will share some natural remedies that may help. 

Hi Linda and other TOS sufferers .

I had a 1st rib resection 17 years ago on the left side . I obviously tried every possible alternative medicine for a period of 5 years before the rib resection without success . Rib resection was the only option to eliminate the constant  burning pain in the arm and shoulders . The operation is very invasive and knocks you down for a long time . The decompression worked and the pain subsided in the arm and shoulder but my neck started to became very unstable and extremely weak . I still have periods of pain and need  regular neck manipulation to reduce pain . I am not near the man i use to be .

Lets be honest , the operation do help with the pain and symptoms but is NOT a cure for TOS . 

After 17 years I can honestly tell you that if i get a 2nd chance , I would not do the operation and do the following which assisted me over the years to reduce pain . 

The best treatment I found was with regular Acupuncture "Chinese"  . It reduce the stress for long periods of time . Stress is the  killer . Regular Chiropractor visit also assist in pain relief .

Think twice before doing this operation . Try every possible alternative . 

Herman Breytenbach · moments ago · Unknown Hometown · Joined 5 hours ago · Points: 0

I had the first rib resection in late August 2017. I had been climbing for about 3 weeks with an arm that would swell up as soon as I got on the wall. I thought it was maybe an injured muscle or tendon or some kind of allergic reaction; either way, I probably shouldn't have been climbing. But I didn't have any pain associated with it, just a full feeling in my arm like it might explode due to the pressure in there. My wife convinced me that I should go to Urgent Care real quick to see what they thought was going on. They sent me to the ER to have an ultra sound because the doctor thought I had a blood clot. I was diagnosed with a DVT in my subclavian vein and sent to a hematologist. He thought it was strange that a healthy 25 year old had a blood clot, but he just prescribed blood thinners for 3 months and said it would go away. We believed him that it would just go away with the blood thinners and I would never have a problem again; after all, he's the doctor not me. We started to do our own research on the issue and found that it could be Paget-Schroetter. Several months and seven doctors later, we found two surgeons that confirmed that it was definitely venous TOS. I decided to go through with the first rib resection surgery.

The 2.5 hour surgery went very well as there were no complications. I spent the night in the hospital eating ice cream and enjoying the 'luxurious' of the hospital. The next day I went home and spent the next few days mainly laying down. Somehow, I had no pain. At the hospital, they only had me on high strength ibuprofen. The surgeon prescribed some nasty narcotics and we picked them up, but I never needed them. The surgeon said I would probably have unbearable pain in the first rib since they cut a section out of it and you can't numb bones. However, the only 'pain' I had was tight muscles in my armpit near the incision site. At two weeks, I went to a PT that specialized in TOS. He started to stretch me out and get my range of motion back. Everything seemed to be going really great and I seemed to be healing exceptionally fast. I even started to ease back into climbing at four weeks!

Five weeks after the surgery, I went in for a venogram to make sure everything was good to go. The imaging showed that I still had an occlusion in the subclavian vein. The radiologist attempted to perform an angioplasty, but it failed as he couldn't pass a wire through the occlusion. The surgeon said the occlusion was scar tissue that formed on the inside of the vein at the site where it kept getting pinched between my collar bone and the first rib. One option was vascular reconstruction where he would harvest a vein from my leg and replace the damaged subclavian vein. He didn't want to do this as it had too many risks associated with it. This left two options; I could wait it out and hope the collateral veins would eventually dilate to compensate for the larger amount of blood they had to pass, or have another radiologist try the angioplasty.

Last week, I had my second angioplasty. The radiologist seemed very optimistic about the procedure when we chatted beforehand. The plan was to go in through the basilic vein in my arm and try to blast through the occlusion. If that didn't work, they would go in through the femoral vein in my groin and try to go pass a wire from the other side of occlusion. I would be conscious for the procedure, but I had the option to have the RN give me some conscious sedation meds if I wanted them. Long story short, it didn't work. When they inserted the catheter in my arm, the wire they used to try to pass the occlusion would always find one of many small collateral veins right next to the occlusion. He then decided to try going through the femoral vein. I will never forget the feeling I got when the catheter passed through my heart; it skipped a beat or two and I felt like Neo in the Matrix when that mechanical worm was inside him. The same thing happened on that side of the occlusion.

I am now scheduling for another angioplasty. The radiologist said since that procedure didn't work, there is one more procedure to try where they pass a needle through the occlusion. If the needle won't pass, it has a heating element on the tip so that it can burn through the occlusion. This procedure will be a bit more serious as I will be fully sedated and my surgeon needs to be on-call in case something goes haywire. Right now, I am still able to climb, but my arm still swells slightly and turns red. If the next procedure doesn't work, I will be playing the waiting game and will wait for the collaterals to enlarge. 

The lesson I've learned from all this is that you need to do your own research. I cannot fully trust the medical system anymore. Although there are bad doctors, most are pretty good, but the system is flawed. How is a doctor going to figure out my condition in a 15 minute appointment? There is a ton of research out there that can be accessed for free online. It is also great that I found this forum because I was able to find someone else in Colorado with TOS and he recommended his surgeon to me, so I cannot thank him enough. It's easy to feel very overwhelmed and want to just curl up into a ball and ignore the whole thing. But it is better to be very proactive and keep bugging the doctors about appointments and results and anything else you need. Being stagnant will not solve anything. After all, I want this to be a small hiccup in my climbing career and I want to get back to where I left off.

Alex Rogers wrote: I'm interested in finding out whether TOS is progressive, and how many people manage it through stretching / physical therapy? I'm pretty sure I have mild TOS. Have been upping my climbing for last 8 months, and over that time have increasingly being getting tingling sensation & numbness in right little and ring fingers, sometimes a bit on palm and base of thumb as well. When it is bad, it goes all down my arm, and source seems to be top of right shoulder near base of neck. Very mild on left side, much more prevalent on right side (dominant). Sometimes wake up at night with completely numb hands. Always worse after training/climbing, never really severe, no loss of strength. My doctor knows nothing about TOS, suggested carpal tunnel / RSI, but that's not right. Found out about TOS from Julian Saunders website, and sounds exactly like this. Have tried some manipulation / massage from osteopath, who also didn't know much about it, but treatment helped, and stretches recommended by Saunders also help. So I plan to continue training & climbing, and just try to add more stretching to my regime + occasional massage. Just wanted to check I'm not being stupid and neglecting something that could get much worse? Sounds like most of you on this thread have much more serious TOS where venous system involved - for me it just seems to be nerve impingement, and pretty minor at that. Understand you can't give medical advice - just interested in your experiences / advice. Thanks

Hi Alex

TOS can always stay mild but can be progressive. I had the first 2 ribs, a cervical rib, and a lot of scalenes removed 11 months ago. The bony issues were congenital so I always had them but I never knew I had TOS. I was told that my headaches, neckaches, and tight neck muscles were from stress. That seems to be the go to. Looking back, that was my only sign of TOS until Sept 2016 when I had acute,severe pain one morning in my whole arm, bad arm weakness that yes my doctor saw, and in a certain arm position the pulse completely went away. I was told.I always had nerve compression that slowly.damaged the nerves but for some reason it got really bad. I saw 4 doctors before I got a diagnosis. My TOS was congenital and no physical therapy could correct that. Surgery was tough but I would do it again. They don't know what they will find until they get in there. My case exactly. Its a long recovery but totally worth it if you get the correct diagnosis. Yes TOS can be progressive and can cause permanent nerve damage. Not something to be messing around with if you have a lot of pain,numbness, or weakness. Also, I havent read about this working for pain but steroids took my pain away. The doctor said there was nerve and muscle inflammation.  Makes sense. 

Hi all, it has been great finding this thread.

I'm Australian, living in NSW. Had a right first rib resection and right subclavian vein stent put in in September. Have felt great, including lifting 10-15kg comfortably, hiking and have full range of motion (for the first time in years) and clarity I  thinking (I was getting very foggy and headachy pre op). Just wondering if anyone has had trouble with stent damage when they go back to climbing? I guess I'm wanting to know how far I can push it...

Fiona

I am not a climber but busted my shoulder in the Army years ago.. Had surgery on it in 2001.  Not sure but in March 2015 i had a shocking pain going from my shoulder to my finger tips.  Minimal grip strength  maybe a 16 on a good day where my right hand is around 80.   The doctors at the VA agree that i re tore my labrum but wouldnt do surgery till they figured out what the tingling/numbness was.  I mentioned TOS after seeing a baseball player get diagnosed with it and had the same symptoms as me.  (tingling, numbness, arm fatigue, usally only happens in one arm)  They started to test me for that.  For next 2 years I did everything they asked.  Finally after another attempt at Physical Therapy the VA doctor said  "We dont do that surgery here or give out a scaline shot blocker"  Hmmmm could have told me this months ago.  LOL.    

So they are sending me to University Health in Denver, Colorado.  I will probably end up getting some kind of surgery as i have minimal rotation in my shoulder and zero strength.  I will keep this place marked so if i do end up having TOS surgery i can post recovery.  

I had the rib resection and vein reconstruction surgery on Jan 29, 2018. I have noticed that some of you have had issues with the vein staying patent. I have had two venogram with angioplasty and it doesn’t seem to be helping. I noticed Brent that you said your vein was permanently occluded as well. You were taken off of the Coumadin. Are you still having issues with occlusion, and still off of any anticoagulants? Are you still back to climbing and regular activities? Do you have some problems with swelling because if it?

I used to climb more than I have recently. I began mountain biking more regularly. I’m afraid of having to be on anticoagulation long term because of my occluded vein. This would hinder my risky activities. 

Thank you for your time.

Bryan - had the surgery in August 2017. Started climbing again in last 2 months and still have swelling. According to doc this is normal. Veins will find new ways to the heart if main vein is blocked off. I stuggle more now with nerve pain than anything. My right arm is still a little bigger and "veiner" than the other. Doc says not to worry and body will do it's thing. He says 2-3 years for blood flow to figure itself out. Hope this helps and PM me for any questions you might have. Been a long process or me and lots of docs as well. But all in all wouldn't worry to much about failed angoplasty imo.

Danny

Danny,

Thanks for your response. Sounds like it should be something I can deal with in the long run. Are you on any blood thinners still? 

Bryn - took blood thinners for two months after inital hospital visit while waiting for surgery date. Then took for 4 weeks after surgery and stepped down to baby aspirin for 3 months after that. Anyway no longer on any meds 

Hi All - really glad I found this thread, it's great hearing other peoples (especially other climbers) experiences with TOS.

As for me - my issues started in October 2016. I had had some minor TOS symptoms prior to this, but no pain and nothing to really make me concerned so I didn't really know there was an issue until my right arm ended up being totally swollen and bright red a day after climbing. I was diagnosed with a DVT in my right brachial and subclavian, went through multiple hospital stays where they did angiograms/angioplasty and thrombolysis to dissolve the clot. I finally had the rib resection surgery towards the end of October. They went in just under my collar bone, and removed some scalene muscles and my first rib. Post surgery the pain was really intense but I had no complications and overall things went really well. Since my TOS really didn't present itself before it was already a significant issue and causing DVTs, no other treatment options were ever really presented to me. I stayed in the hospital for 5 days and went home with pain killers and blood thinners. I had one additional follow-up angioplasty and was able to stop taking coumadin at the end of January 2017. I was able to start climbing again after I came off the coumadin.

I also started PT during that time and continued it for a while after I had come off coumadin. The PT was very helpful in regards to just getting my shoulders back in alignment and moving in sync and restrengthening the right side where I'd had my surgery. I probably didn't do the physical therapy as long as I should have because I had been laid off at the beginning on the year and didn't want to continue to rack up medical expenses.

I've been back into climbing for a little over a year now - I'm able to climb at least twice a week, and am climbing at a similar if not more difficult level as I was prior to surgery. I've also started working back in some light weights and body weight exercises in the last few months to start really building up arm strength again. Some days my arm feels back to normal, but I do still have some complaints with it - particularly a lot of pain and muscle tightness at the base of my neck/upper back on the right side. I occasionally get some numbness and tingling in my arm and hands if I'm laying in a particular way. The issues become much worse if I'm being careless about my posture or have been working my arm particularly hard.

Things that really help for me is rolling my shoulders out on a foam roller, I also have a theracane so I can work out the knots at the base of my neck when they're bad. In general - any stretches that help me open up my chest, lengthen and stretch my neck and roll my shoulders back are enormously helpful (posture was probably a contributing factor to my TOS). I've also just been trying to work on improving my posture in general since I think this was a major factor for me and I can almost immediately feel it if I'm slouching versus keeping my shoulders up and back. I think a really important thing as you're getting back into climbing or other physical activities is to just listen to your body, ease back into it slowly and not push it too hard. If your body isn't ready to meet the physical demands you're making, you're likely to injure yourself and prolong your recovery period even more. 

Wow! This is incredible you guys. I was starting to feel very alone, like a rare unicorn or something until I stumbled across this thread! Thank you all for sharing your stories.

I was just diagnosed with venous TOS 2 days ago. I was snowboarding at kicking horse in BC during January of this year and took a horrible fall and a couple days later my right arm swelled up pretty significantly. I had zero pain and hardly any change in skin color. The swelling subsided quite a bit on its own but I still had a gut feeling that something was totally off. I kept saying 'my arm feels clogged, like the blood isn't able to circulate'. It took me over two weeks to finally decide to see a doc after there was still some swelling that would not go away. That's when I was diagnosed with an extensive DVT in my right subclavian & basilic veins.

I saw a vascular surgeon 2 days ago to get a venogram & venoplasty to address residual clot after being on Xarelto for 3 months. The images showed that my first rib is squashing my subclavian vein and that I will most likely need a rib resection.

I'm pretty nervous about this procedure but some of your stories and successful recoveries give me a lot of hope! It's also nice to know that we're all in this together even though it's a rare condition.

Catherine Klauss wrote: Hi Brent, I actually had a first rib resection and pec minor release on my left side about 6 months ago.

... Okay, I'm nearly 3 years out from surgery, and wanted to post an update on my recovery.

It took about 2 years to get back to where I was with climbing, and now 2.5 years I've improved on where I was ever was. It was a long journey. I saw 4 PT's, 2 massage therapists, and 1 personal trainer, and each of them contributed to my recovery. I recommend seeing multiple PT's (not at the same time, but over the years) as they each take a different approach and know how to solve different issues. I had many issues after surgery, mostly to do with muscle cramps.

Without my pec minor, my chest muscles would cramp with heavy exertion and carrying heavy backpacks. Without my pec minor, my lat and small back muscles would cramp with climbing and yoga. Without my two scalenes, my remaining neck muscles would cramp with boat rides and long car rides, and this would lead to dizziness. It took over two years for my body to learn how to operate without these muscles. Different PT's knew how to release different cramps to get me feeling okay again, and they would suggest small exercises to strengthen the weaker muscles. Ultimately I really benefitted from working with a personal trainer with climbing experience. They were able to see all of my imbalances and develop a weights plan to correct them. Seriously, I showed up on my first day of training able to do many pull-ups, but not a single push up. I was very imbalanced. When I started working with the trainer is when I started to feel stronger than I ever have, so I definitely recommend finding one.

There was one recovery setback that stands out: shortly after I started a new job, my left arm began to go numb while typing. I was terrified - how could the numbness return? Did I redevelop TOS? What could possibly be left to pinch my nerve?? Did the rib grow back??  But an informed orthopedic guessed that I had teres major syndrome, where the small muscle in the back of your shoulder compresses the nerve. A quick dry needling session cured it right up.

In terms of lasting effects, the back of my upper left arm is still numb, and likely always will be. This doesn't bother me much, who needs feeling there? And I'm now much more careful to not over-exert myself in a single move, and to take care of my muscles post climbing. I developed new sports (hello mountain biking!) to keep me from overdoing climbing again. I still worry I could develop TOS in my other arm. When I wake up in the morning and my other arm is numb, I worry. But then I act smart about it - I nurture my muscles with heat and massage, and take a break from the wall. I'm sorry I had to go through such a difficult injury and surgery to learn to take care of myself, but I am glad I learned.

What a wonderful thread. Thank you all for sharing your stories. It is true that there is very little information about TOS out there. Most doctors also seem quite unaware of this syndrome (how to diagnose it, and how to treat it). I myself was officially diagnosed with arterial (both sides) and venous (left side) TOS just this morning. They didn't even bother doing nerve tests, although I don't think they are an issue. I live in Ontario, Canada. Given our medical system, it took a long time to get to the point of diagnosis, but I am actually very relieved to finally find out that 'it's not just in my head' (which is essentially what my family doctor thought it was... I've since changed family doctors). The vascular surgeon said that they will do a first rib and cervical rib resection (my TOS appears to be caused by congenital bilateral cervical ribs), probably this fall. They will do one side at a time, so two surgeries to go through.

I first noticed issues with my arms about 15 years ago, when doing basic training for the army reserves. Drill and exercise involving the arms was always difficult. At the time, I just assumed that I had weak muscles and needed to exercise more. Over the years, my arms would go numb when I was painting walls/ ceilings, when reading in bed, etc. However, since it had been happening for so long, I always thought that everyone had this issue; it was essentially normal (if not extremely annoying) to me. However, in the past year or so, my neck has been feeling so tight I could hardly move it. I've been in pain on a daily basis. My chiropractor did an xray, and noticed cervical ribs. That's how I started putting two and two together. As mentioned before, my family doctor literally rolled her eyes at me when I mentioned this to her. I had to circumvent her and ask my orthopedic surgeon (who did a lumbar fusion two years ago... I am an otherwise healthy thirty year-old... I just have lots of bone problems for some reason) to give me a referral to see a vascular specialist. And here I am now.

I am writing because I have a few questions for you who have actually gone though this...

1) I have a slew of symptoms. Some of them are textbook vascular TOS (ie. hand numbness, loss of pulse when lifting arms, etc.). I also have severe muscular pain in my neck, shoulders, and occasionally the arms. I have trouble moving my neck; it feels locked in place. Almost a constant headache. However, I also feel exhausted all the time. I sleep 10-12h per night (and I work full-time and have two young children... needless to say there isn't much time left to do anything else). Does anyone know if vascular TOS can cause fatigue (and resulting brain fog)? There isn't any info about that anywhere... I was actually excited to get the TOS diagnosis, in the hopes that having the surgery would help me with this fatigue I've been experiencing for years and frankly, is seriously impinging on my quality of life.

2) I didn't have much time to discuss things with the surgeon this morning. Based on my online research, it looks like sometimes an arterial reconstruction is also required. He didn't mention that though, and I didn't think to ask... Is this something they just figure out once they 'get in there'? Or if there was a need for that, would it have been seen on the ultrasound they did to diagnose the vascular TOS?

Sorry for writing so much! It's just so nice to have found a group of people who have undergone similar issues and who can speak from actual experience. Thank you in advance!

Jane

Has anyone ever had success with chiropractic, acupuncture, or rolfing as opposed to jumping right in for the rib resection surgery?

I have venous TOS from a high velocity impact (hard snowboard crash) this winter. I think it compressed the thoracic outlet because I never had issues prior to the crash. A venogram confirmed that my first rib is squishing my subclavian. However I hardly have symptoms.

Catherine Klauss wrote: ... Okay, I'm nearly 3 years out from surgery, and wanted to post an update on my recovery.

It took about 2 years to get back to where I was with climbing, and now 2.5 years I've improved on where I was ever was. It was a long journey. I saw 4 PT's, 2 massage therapists, and 1 personal trainer, and each of them contributed to my recovery. I recommend seeing multiple PT's (not at the same time, but over the years) as they each take a different approach and know how to solve different issues. I had many issues after surgery, mostly to do with muscle cramps.

Without my pec minor, my chest muscles would cramp with heavy exertion and carrying heavy backpacks. Without my pec minor, my lat and small back muscles would cramp with climbing and yoga. Without my two scalenes, my remaining neck muscles would cramp with boat rides and long car rides, and this would lead to dizziness. It took over two years for my body to learn how to operate without these muscles. Different PT's knew how to release different cramps to get me feeling okay again, and they would suggest small exercises to strengthen the weaker muscles. Ultimately I really benefitted from working with a personal trainer with climbing experience. They were able to see all of my imbalances and develop a weights plan to correct them. Seriously, I showed up on my first day of training able to do many pull-ups, but not a single push up. I was very imbalanced. When I started working with the trainer is when I started to feel stronger than I ever have, so I definitely recommend finding one.

Thanks for sharing Catherine. I had a rib resection and scalene release, but no pec minor release. I am currently one year out of surgery and am going through these cramps that you describe whenever I overexert climbing or doing any sort of exercise for that matter. Glad to hear someone else went through a similar process - its extremely frustrating. No matter how much PT, stretching and chiropractor work these knots and "calcified" muscles come back with a vengeance.

J FB:
1.) I would be careful all of these symptoms sound like neuro TOS, with the exception of the pulse. Headaches, numbness, muscle fatigue are all N TOS. In my experience when my nerve is really mad at me it affects my quality of life and makes me generally tired, cranky and irritable as much as I hate to say it. I cant speak to vascular TOS causing a fog. The only symptoms I had from vascular TOS were blood clots, swollen arm, and discoloration. The day I went to the hospital for vascular TOS I went for a 6 mile run thinking it would loosen up my arm and shoulder - had no idea I had TOS. LOL!

2.) I encorage you to continue doing research from many different .edu sites. I found that at time when diving into the depths of the internet to find a lot of information that freaked me out and really wasn't useful. John Hopinks and the mayo clinic are two good places to start to inform yourself. From my understanding they are able to diagnose all forms of TOS (neuro, arterial, vascular) before surgery. Also, I spent almost 2 hours with my surgeon talking about TOS, and would not want to feel rushed by him or pressured to do the surgery as it is very invasive and can cause some pretty severe complications - just my 2 cents.

Amanda:
From what i gained through my TOS journey was that in some cases all of your mentioned methods can work for TOS; however, if due to high impact injury it may be less effective. All stories I have heard success from alternative methods were for N TOS not vascular. Every surgeon I saw before deciding to have the surgery done (4 Surgeons), told me if I didn't care about climbing or surfing again - then no surgery was necessary and I wouldn't have to worry about clotting if I avoided overhead sports. I had 100% blockage with my arms at shoulder level and 80% at resting. Being extremely active and participating in many overhead sports, surgery was my only option. Again, this is what I learned through my journey and am not a doctor so would encourage you to do your own research and talk to your doctor.

General Note:
I had no idea I had TOS before I landed in the hospital. If I had known about it or could go back in time, I would have pursued every holistic method possible. The surgery sucks. No other way to say it. I missed a lot of time at work (desk job), its extremely painful, one year out I am still dealing with scar tissue and I still have to do consistent (daily) PT exercises. Lastly, there is no guarantee of success. Depending on who you talk to they will tell you there is a 66-75% chance of success and a 5% chance your n TOS could get worse. I don't know if mine worked yet as there are some people it takes years to get pain free. I still have good and bad days but at least I can climb and surf without having to think about clotting up again. Hope this helps....

Danny