First Rib Resection for TOS

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!

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

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 hope you don't mind me asking you a question? You wrote here it sais just over a year ago so it's a bit weird me asking it now lol! But I searched on googled TOS ect I found this chat and how you've explained the first days ect fits what happened to me 100%. I had my surgery 5 days ago now, I had no extra rib the right side first rib removed and also a muscle that was crushing all my nerves there.. I'm sorry I had to laugh the first two days you thought you were dying because 3 days ago I was exactly the same it really was horrendous I fully understand. My first two days were so so bad I didn't know what to think my pulse was sky high so that made me worse. I couldn't get out of the hospital bed. The 3rd day I did and I got to cocky and tried the walk my surgeon suggested (a pretty long walk) I regretted it almost instantly as I nearly passed out a few meters up the hall. I'm 22 I also thought it would be pre easy to just get up and go, I was so wrong. I got out of hospital today. But yeah 5 days it's been now the inside of my arm is numb I can't feel it at all, does that ever come back? And also are your symptoms fully gone? No more pain? I'd really appreciate it if you got back to me about this. Thanks so much.

Hi Liam

I'm a Brit who moved to the US a year ago. I've just had surgery for VTOS (clot removed, first rib removed). Can't tell you how it all turns out, as I'm still in the midst of it!

Just wanted to contact you because there is a ton of research that says dealing with it very quickly, the clot in particular, significantly increases the odds of a really successful outcome. Therefore Venous TOS is meant to be dealt with as URGENT! Not trying to worry you.... just sounds like things are moving slowly, and if you have any opportunity to push to see someone sooner, please do! Every week counts.

Sending positive vibes across the ocean. Good luck!

Hi Liam

Sorry for the late reply - still in time for your appointment in the 13th though 😄. I had an MRA when they realised I didn't have a radial pulse with my arm raised. This is an MRI but they inject you with dye to see the pathway of the vessels. They did this with my arms down and then raised. This showed bi-lateral arterial TOS as there was a complete stop in the artery with my vein raised. The vein wasn't included but they said based on the artery the vein was most likely involved. So that is how we knew it was both sides but I didn't really have any symptoms on the left. I opted to get the left done three weeks after the right because I would have had to have had it done at some point anyway and I thought it was best to get it over and done with before my surgeon moved to a different hospital. Good job too as the left was worse than the right and I had very little venous flow even with my arms down. The surgeon was amazed I had never had a swollen arm. My TOS was both blood vessels and brachial plexus but no blood clot - lucky escape from the blood clot by the sounds of the state of my vein compression. My incision sites are still tender and itchy and I am still getting headaches and pins and needles at night, however, I have full function back and no shooting stabbing pains down my arm anymore so I was say I am a good 85% there now but I had a lack of blood supply to my arms for over a year before I was diagnosed and operated on so my muscles are weak and will take a long time to build back up. I started doing physio exercises at home straight away just little and often and then started going to my physio 3 weeks later for 6 weeks. I did used to be very active and do body pump and combat so did used to do a lot of upper body weights as part of that it is just going to take me quite a long time to build back up to it. How did you discover your vTOS - did the clot give you sudden acute symptoms? If you haven't got all the other symptoms which go with the nerve and artery compression your recovery should be pretty quick. I had a scalenotomy as part of the rib resection too and my incisions are sub clavicular. Let me know who your surgeon is and what type of surgeon he is as there are very few TOS surgeons about. Make sure you write a list of questions out before you go (including how many of these procedures he/she has done before) and write down the answers as it is quite stressful and I would always forget the answers as soon as I left or then wished I'd asked something else!

Also, be adamant they fully check the other side with the correct scans - you could really do without another blood clot. Not many people know this but just because you get referred to a certain consultant on the NHS doesn't mean you cannot choose another anywhere else in the country. If you are not happy and confident in them it may be worth researching somewhere else. I have just heard about a surgeon in Finland doing this procedure endoscopically which would have been great had I had the money to get it done there 😂😂. Worth asking you surgeon if they will do it that way though.

Hope it goes well

Keep me posted

Take care

Jules

I read your threads with interest.  My son has had a problem with both arms since he was a teenage swimmer at a national level, circa 10+ years ago, and yet having had every investigation possible still hasn't managed to get a positive diagnosis for TOS despite every specialist saying it is a typical case - pain in arms on elevation and significantly reduced blood pressure/pulse; he also has chest pain on exercise which may be associated.

He is once again visiting his GP to ask for another referral for further investigation given it is probably around six/seven years since his last investigation (angiogram at St Georges in London).  Keen to try and find a consultant who specialises in this area thus wondered if you had any advice in this respect.  He lives in Manchester but is willing to travel anywhere and can, if necessary, also go private.  Any advice would be much appreciated.

Hi, I'm 22 I started weightlifting at a young age (14) I have a problem in both arms also, I was told there is no "test" to ultimately show that it is TOS the symptoms speak for themselves. I had every test possible back and forth like yourself. I had my right side done just under two weeks ago. Swansea Morriston hospital mr ruddle. He has performed 170+ of these operations. I highly recommend him he really does know what he's talking about, I found everyone else useless in my opinion he is the best ever!! I highly recommend him. It's a bit of a treck from Manchester, but atleast your son would have the answeres he's looking for. Hope this helps.

Thanks for your response which is really helpful and glad to hear you have finally found someone to help - I hope long term you have a positive outcome.

Lots of questions if you don't mind.  Do you know what was causing your TOS and what were your symptoms? How did Mr Ruddle reach a decision to undertake surgery if you had previously had other negative investigations? My son believes he may require a scalenetomy - is this something your surgery involved?

Any info you are prepared to share would be much appreciated.  Many thanks for your time in responding to my post.

No problem and thankyou. Yeah no worries I was told the right side I had compressed nerves and the left compressed veins. I was having physio for ages and ages that never helped ME, I'm not sure if it does help people with it. I was just sent here there and everywhere, I had a venogram and it showed everything was fine flowing all okay, even with arm raised. I had really had enough. Nothing was right at all to me. But when I met mr ruddle he was very straight to the point he basically said can you live with it (symptoms) or not. I said I'm at the point now I don't think I can anymore it's affecting my job my daily life ect ect. Surgery was the last thing on my mind but I couldn't hack it anymore I needed a relief. I had the first rib removed and also the scalene muscle. I can't feel any symptoms on the right now I've had it done (touch wood) it stays that way. Everything's pretty numb at the mo and hopefully it is all gone. The left side I'm going back in for. My symptoms would be everywhere a horrible stiffness sticky horrible feeling asif everything was clotted up in the side of my neck above and under collar bone mainly, kinda like I was being chocked or pressed on constantly, a fullness about it all. Down my arms a heaviness tightness around my wrists and forearms. Everything in those areas was very very tight and uncomfortable. Some days better than others but not much in it.

Hi Julie,

I have been reading through the thread as I was actually trying to find someone in the same situation as me. I'm 23 and I have been diagnosed with a similar condition to TOS but mine is classified as PSS (paget Schrotter syndrome). The reason I am contacting you as I am also based in machester. In April I discovered a blood clot in my chest which was caused by my first right rib completely cutting off blood supply when I had any elevation of my right arm. I have been seeing the head of vascular mr Jonathan ghosh at wythenshaw hospital. He has been amazing. Unfortunately after secondary scans and tests as a precaution I have the same problem on my left side and I am due to have my left first rib removed too. Mr ghosh actually has TOS himself and completely understands the condition. I would highly recommend being referred to wythenshaw. I hope that helps and you get answers soon

is your arm still numb as I had mine done 1985 and some of my arm is stil numb it's because they cut through nerves

Yeah my bicep area is still numb. I don't think it'll ever come back as they also cut through the nerves. It's been 5 months now. Woah 1985 your the first person I know who has had it such a long time ago! I have now like a burning sensation by my collar bone and insition area (under the armpit) I also do mma and am still yet to return when I punch I get like a sharp pain under my armpit. Or move to fast pain again. Does that go away? And you also mentioned a rib can grow back. I've also heard of that happening that really freaks me out haha!! But I have also read if they do it properly it won't ever grow back? Any help much appreciated

My 14 year old daughter had this surgery 2 1/2 weeks ago and still has numbness in her fingers. Did you experience this?

Hi Tracy yes I have heard that Numbness is quite common and I spoke to many people who had had it up to two or three weeks I would do for myself wrist rotations and some little exercises to help with circulation so mine is gone and it's been one week since my surgery. Although sometimes when I wake up I do feel a little bit of tingling sensation I think that's just normal until we are fully using our arm more. Well I hope everything else is going well! Any other questions please just let me know and I'll tell you from my experience what I know

No I didn't have numbness in the fingers but I'm numb under my armpit ,,how is she now ,has she still got numb fingers or back to normal, just wondering how they do the operation these days ,mine were all opened up from my neck

Hi it does take a while for all the sharpe pains to go but it's just like anything ,you've just got to carry on and try not to let it take over , I think throwing a ball is the worst thing but after many years I'm ok with most things ,mixing and painting ceilings is hard work yet my arms are so strong

I had surg 3/16. I had numbness before surg and sometimes will experience it now. This is usually due to sleeping wrong. It can be unfortunate when I don't realize it and I go to hold something COMPLETLEY in vain. Hope she is handling this well. It's probably best she had this done early so that things DO still have opportunity to regenerate and reorganize. Good for YOU for listening to her and helping her through this process. You're an AWESOME mom for doing so!