First Rib Resection for TOS
Posted , 28 users are following.
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?
2 likes, 61 replies
Posted , 28 users are following.
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?
2 likes, 61 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
wendy176 seth29407
Posted
jadedjan122 seth29407
Posted
wendy176 jadedjan122
Posted
jadedjan122 wendy176
Posted
wendy176 jadedjan122
Posted
CanadianRN wendy176
Posted
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!
wendy176 CanadianRN
Posted
CanadianRN wendy176
Posted
wendy176 CanadianRN
Posted
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.
CanadianRN wendy176
Posted
wendy176 CanadianRN
Posted
a26543 jadedjan122
Posted
Jules100201 wendy176
Posted
liammustoe Jules100201
Posted
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.
Jules100201 liammustoe
Posted
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
Snowcraher wendy176
Posted
... 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.
liammustoe Jules100201
Posted
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
liammustoe Jules100201
Posted
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
liammustoe Jules100201
Posted
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
Jay182 jadedjan122
Posted
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.
Brownstone liammustoe
Posted
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!
Jules100201 liammustoe
Posted
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
Julie1610 Jules100201
Posted
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.
Jay182 Julie1610
Posted
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.
Julie1610 Jay182
Posted
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.
Jay182 Julie1610
Posted
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.
stephanie57216 Julie1610
Posted
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
ChristineMH67 Jay182
Posted
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
Jay182 ChristineMH67
Posted
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
tracy26978 jadedjan122
Posted
emilee44 tracy26978
Posted
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
ChristineMH67 tracy26978
Posted
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
ChristineMH67 Jay182
Posted
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
Snowcraher tracy26978
Posted
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!