Has anyone had this surgery and had a good recovery? If so how long did it take, do you feel normal, and are you restricted at all?
Hi seth, All I can say good luck and well done if you have got this far to get offered the op ! I am still trying to get another consultant after the first one was waste of time, I have been diagnosed with cerivcal ribs both sides, and has you will know the pain that comes with it !!!! been waiting now for nearly five months to see another consultant ! and still not heard. having accuputchure at the moment, but does nothing. I have had this now for nearly 2 years, and got no further with treatment ! So well done or you must have a good doctor and consultant. good luck.
I just had my first rib removed at the end of Aug this year. So I am just over six weeks post op. To be honest, my nerve pain that I have had my entire life on my left arm is gone. That is the good thing that has come from surgery. The day that I woke up, I thought that something had went wrong, the pain was indescribable and I felt as though I was dying for the first two day's. I had a left collapsed lung, a catheter which was a God send and a drainage tube come out of right underneath my left boob, that was excruciating as well. I went home from the hospital on my fourth day while being on a Dilaudid drip every 15 min. Plus oral Tylenol and tramidol. The ride home was painful and I spent the first two weeks at home suffering from extreme pain, crying from depression from the pain and a feeling of sadness, I still thought that I was dying. How can you be in so much pain and live through it? Well, I did. It was a tough first two week's, but by the third week, everything was so much better. I am pretty young so I figured that I would just bounce right back, but NO! There are so many other thing's that some along with surgery, like, how weak it make's your body. I ended up back in the ER my second week because I was so weak and lightheaded all the time. My liver enzymes were out of whack and my magnesium was very low. I still tire very easy.. I am hoping for a FULL recovery soon. The first two weeks, I wish I could have just slept through. 
Good luck to you. I will answer any question if you have any specifics that you want to ask.
Hi, Thanks for your reply. my god you have gone threw it, may I ask a couple of questions, your age ? and how long did it take to get to the stage of your op. I know you put you had it all your life, but at what point did you see anybody about it, to explain what it was !! I hoep things will get better for you soon 
It's no problem at all.. I have had severe pain in my left arm for as long as I can remember.. Also my left arm is a little smaller than my right even though I am left handed. When I was 23 the Dr finally decided to do an X-ray on my neck to see if something up in that area could be causing my pain. That is when I was told that I had bilateral cervical rib's, bigger on the left. That explained my problems. We did the EMG testing which showed nerve damage on the left side which I had already known anyway. Over the past 10 year's, I had done multible physical therepy sessions, more EMG testing and finally now that I am 33 and have been suffering from many more symptoms, my Vascular surgeon sent me to have an MRI or my neck and head area, also a CT scan of the same area which showed that my left subclavian artery was compressed in the thoracic outlet area by 40%. That was about 6 months ago, it also showed that I did not have cervical ribs, I instead have an elongated transverse process of C7 worse on the left, which is kind of the same as cervical ribs and I am not sure why they call them differently. So I hoped that helped. 
Hi jadedjan, you learn so much off this site. I have had all these tests. of which show cervical on both sides. and this was nearly two years ago. my life is on hold at the moment because of pain. try to do every day tasks, but then suffer later. my first consultant does not know where to go with itand how to manage pain, on loads of tablets and phyio plus accutputcher of which does not help. and now been waiting to see another consultant for second look. but thank you for your letter. learnt some more.
Tell the Doc you wake up from the pain and that your hand and wrist are swollen and your veins are very distended or bulging. The pain is from TOSn nerve but swelling is from TOSv vien which is the vein compression she is telling you it puts you at risk for DVT's which is more dangerous( might speed things up). I pretty sure I have both I'll but got a xray that read normal but when I looked I noticed I broke off part of C5 at some point my chiropractor was shocked but I didn't want surgery and I didn't want to know what was wrong but know Ill do whatever I have to so I've reseached and pretty much diagnosed the problem My arm and especially hand is constanly numb and throbbing my viens are distended I am getting migranes in the back of my head my neck is super tight I cant sleep and when I do I where a wrist brace so my I also drive with my unaffected arm because my arm drops my wife asked me if my car needed to be alligned today LOL. Im a RN so we naturally avoid docs and don't do what we are supposed to I don't even have a primary doc my first appiontment is tomorrow but I already booked a MRI for saturday and a nerve study for 2 weeks from now with a neurologist hopefully he will shoot lidocaine into my anterior scalene muscles which offers temporary relief and confirms and diagnosis, also need a CT of my shoulder and maybe a MRA of the vessels in my shoulder then I will get a referral to CT surgery or Vascular if there is arterial or venous compression. It costs money but if you want to know just about everything about TOS pay for a 3day subscription on "UP TO DATE" I see alot docs looking stuff up on it in the ICU
My advice to you call the biggest hospital around you ask to talk to a Nurse in a surgical ICU ask which CT Surgeon they recomend and maybe they will tell you who their primary doc is or give you the name of a doc that has a relationship with the doc you want, you may have to go through a couple refferals to get to the doc you acctually want tell them you cant sleep because of the pain, your arm swells at night, get your pain meds from a separate doc lyrica may help, tell them you hurt but dont ask for pain meds borderline refuse them you are pushing for surgery and if they label you that will derail how quick and willing they are to help. ask the receptionist to call and make the apppiontment for you she may be able to speed things up if a appiontment is a long way out, ive seen pt's get surgery in 2 weeks with docs that are 8 months out. If they don't call for you... in a week tell them you cant sleep and ask them to call again and try to get your appiontment moved up it can be a game. Good luck!
Hi CanadianRN, many thanks for your repy. They know all this, told the I get no sleep, and when do it wakes me up, with swelling to the arem and hand ? but you have pointed out to me for few great points, thanks for that.
You may also be able to get a referral from a chiropractor and they may have a good relationship with a surgeon from refering PIP patients from a car accidents and can get you in quick also hate to say this but you may need to get better insurance too that can be a problem. Money makes the world go around
Hi I am from UK. NHS !!!! Quick sevice !!!! seeing my doc on 28th to put complaint in. I have tried to go private but they will not refer me ! Had a really bad week, pain stronger than ever, and like you said swelling of the hand and arm bad the last to mornings.
Do you take Lyrica or gabapentin they are miracle drugs for nerve pain better than any narc.
Hi been taking gabapentin 12 a day 300mg. but to be honest don't touch the pain ! tried the pre-gabapentin but to many side affects.
Thank god you posted this. I'm at week one and its total hell. They deflated my lung as well and it's all been way more than I thought it would be. I appreciate your post greatly!
I had this done on 6/23/16. It took me YEARS to diagnose. I switched Primary Care Doctors and he was so super excellent he sent me to the Physiatrist for ECGs, Xrays where it was obvious. Only left side has been problematic. No feeling and chronic INCREDIBLE pain. My PCP put me on Lyrica 200mg 3x daily... This was the ONLY way I could have made it through to surgery. I used Tiger Balm Patches (stinky) or Lidocaine that actually helped topically on my neck area. Physical Therapy was a waste of time. My Vascular Surgeon is MY ULTIMATE HERO!!! Dr. Kaj Johansen. He is AMAZING!!! He got me on the cutting room floor in good time. Surgery went flawless. I was in the hospital one night with the pain pump. I couldn't stop giggling... if you have never had this before, it is the wildest feeling EVER. Think dead arm... I would get up to go to the bathroom and leave my arm behind. I'd have to pick it up an shove it back in it's sling with my other hand. Other than that, recovery has been going well. I started school, 1/2 day, 4 days out of the hospital if this helps you with timing. I didn't feel great but it's doable. I can ALREADY say that this is LIFE ALTERING! I can't blow dry my hair yet but I can raise my arm over my shoulder. Woopie!!! Life's little accomplishments. Still in a bit of pain but I also have Psoriatic Arthritis so I'm a hot mess already. Happy Surg!
Hi, there. I am two weeks post op of first rib resection and scalenotomy and doing really well and pain subsided quickly. I thought taking 8 months to get a diagnosis was a long time but clearly not! Ask for a referral to Marco Scarci who is currently a thoracic consultant at Papworth in Cambridgeshire but he is moving to UCH in London next month. I have bilateral arterial and venous TOS he he has dealt with several TOS patients. He managed to get me an MRA very quickly. If London is no good for you, let me know and I will find out who deals with TOS nearest to you as these consultants are few and far between in the UK.
Hi jules,
I hope you're recovery is going well, could you give me an update and a short summary of how your last 3 months have been if it's not too much trouble. I've recently been diagnosed with Vtos and I need to get my first rib removed. I have a clot in subclavian vein, not in any discomfort or pain and on blood thinners (rivaroxaban) currently. I was hoping to start university and a internship in September (end of that month) but have a check up with consultant on the 13th of September which will be to discuss surgery.
To your knowledge and personal experience how long didn't take for you to get back into regular life, I'm in Gloucestershire and have been told my procedure would be in Exeter whilst I was hospitalised just wondering if you knew much about the standard/level I could expect all I seem to see online is case studies or American experience.
Hi, thank you for your messag. I don't mind giving you an update at all, like you say it is a rare occasion on here to find someone going through the UK system. It has been 3 months since I had the right side done and two on the left. I returned to work for a week three weeks after the first op and three and a half after the second. It definitely took longer to recover after the left from the anaesthetic and as the left was a more complicated op as the vein was 80% constricted and the brachial plexus more "stuck". I had stopped taking all strong painkillers at about two weeks post op except at night but continued with Diclofenac and paracetamol and then all regular painkillers could be stopped about three weeks ago, just occasional paracetamol now. Although I made the mistake of helping my sister out with my five month old niece for a few days - not quite strong enough for that yet 😄😄. My symptoms were severe though in terms of my loss of function as brushing my teeth, stirring a saucepan etc were difficult tasks. I can do all this now and have full function in both arms, I just need to continue to build up strength for which I find swimming helps and my Physio is amazing. I have some occasional sharp stabs of pain down my arms and pins and needles at night when lying flat (been told this could take 3/4 months to go) and my incision sites (sub clavicular) are still tender but apart from carrying bags on my shoulders and upper body weights at the gym there is nothing I do not carry on and do now. Who is your surgeon and what specialty are they?
take care
jules
... I call it the "Gaba-hangover." Gabapentin did NOTHING for me but side effects. Doctors kept INCREASING my dosage and telling me it would get better with time. It didn't. LYRICA is a MIRACLE drug for me. It's the only thing that targets the nerve pain and NO side effects. I take ONE 3x daily 200mg. You should push for it. I'm a HUGE advocate trying to live like a "normal" person dealing with this non sense.
Hi jules,
Thankyou for your fast reply and all the information you've given me so far! Definitely reassuring hearing your first hand experience and thoughts with all of this!
I've seen online a few people have had to get both sides done and yourself included, did you initially go in with one side and then develop the symptoms and issues on the other side or was it both sides from the beginning? curious to know whether I should expect/prepare for the same procedure on the other side now after seeing this but currently only looked at the left side.
Congratulations to you and your family on the birth of your niece hopefully it won't be much longer until you can make the most out of being a aunt physically!
Personally I don't struggle with much I notice a slight 'heaviness' in my left arm when I blow dry my hair and occasional pins and needles which disperses soon enough after changing positions, up until a month ago when I was diagnosed I was very active in the sense of weightlifting and have a average level of fitness you said you don't do much upper body training is that long term or just post surgery? Also sorry to bombard you with questions, but how often do you see physio and how quickly did you start your sessions? I would also like to stress how thankful I am for all the information you have already given me!
I don't know who my surgeon is by name or anything like that yet I assume this will be discussed on my next appointment with the specialist on 13th September?
Liam
Hi jules,
Thankyou for your fast reply and all the information you've given me so far! Definitely reassuring hearing your first hand experience and thoughts with all of this!
I've seen online a few people have had to get both sides done and yourself included, did you initially go in with one side and then develop the symptoms and issues on the other side or was it both sides from the beginning? curious to know whether I should expect/prepare for the same procedure on the other side now after seeing this but currently only looked at the left side.
Congratulations to you and your family on the birth of your niece hopefully it won't be much longer until you can make the most out of being a aunt physically!
Personally I don't struggle with much I notice a slight 'heaviness' in my left arm when I blow dry my hair and occasional pins and needles which disperses soon enough after changing positions, up until a month ago when I was diagnosed I was very active in the sense of weightlifting and have a average level of fitness you said you don't do much upper body training is that long term or just post surgery? Also sorry to bombard you with questions, but how often do you see physio and how quickly did you start your sessions? I would also like to stress how thankful I am for all the information you have already given me!
I don't know who my surgeon is by name or anything like that yet I assume this will be discussed on my next appointment with the specialist on 13th September?
Liam