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?
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.
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!
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.
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.
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
Just a few questions for you. I am getting surgery 1/5/17 and they were very vague on telling me about recovery. They are removing my first rib because it is cutting off all blood flow to my fingers. I am currently very active and was wondering how long it took you to start moving and get off the pain meds? Luckily I am on break for uni and won't have to worry about school for a few weeks but when will I be able to drive as well as write since it is my right (dominant) arm. When were you able to start doing physical therapy?
thank you so much for starting a discussion about a positive recovery! All I've read are horror stories, and I thought ones who did well didn't write about it on the Internet. I hope Emily 8596 is doing well!
my husband is getting his first rib resection on 1/18/17.
its been quite a journey for him: diagnosed with Paget Schroderers last August, after suffering a blood clot in the left arm. The blood clot surgery gave him accute kidney failure! Very rare and bizarre apparently. He is well now, and did not need dialysis. He is understandably worried something might happen again that is bizzare and rare!
I am am trying to prepare to make him comfortable to recover, and I really appreciate again the tone of this thread. Hopefully we will be able to report good things in 2 weeks time. If anyone has more advice for recovery please post. Thank you!
I was in school also. 4-5 days I had off and was back in class. The pain meds (I've had to go through detox before) I weened off of quickly. I have tramadol and lyrica that are my preference but, definately at times (usually at the end of day I'd have to pop a pill). My surgeon even suggested taking one before PT to help push me. That was also good advice. Not sure if I shared on THIS post but my surgeon also gave me an excerise that helped tremendously for reach. Take your fingers and crawl up the wall like a spider with your hand. Day after day I was able to raise my arm up higher and higher!
So, driving.... let me give you some advice/advance notice on that. I had to shut my driver door with my right arm. I had surgery in the left. Sharp turns are a little more work because you will need to compensate for strength. I would need to turn on my turn signals and turn on head lights by akwardly reaching with my right hand. I STILL need to turn on lights this way. I'm SOOOO much better especially with the pain... GOOD GOD the PAIN was SO EXCRUTIATING... but, yes, there are minor things like this that don't function quite so well yet. It's the turning motion and grip that gets me. I don't feel so well in that hand most days so things like putting in earrings with backs to them, sometimes hooking necklaces (but that's hard as a healthy person too, lol) and zipping up my jacket can require some manouvering. There are also days that I forget I have problems, so all in all... good things.
Physical therapy you can start right away... or as soon as you feel up to it. It IS surgery so your body will take a hit. Give yourself the time your body is telling you to recover. I live by myself. My mom came for the first day or 2, but I was up and doing for myself pretty quickly. I'm also active and ADHD, so sitting/laying around is irritating to me. It is good to push yourself, so if you feel you can take it, do it. Know when to stop. You'll learn that point yourself if your anything like me. If that takes some pain meds... well, do it. As for writing, I don't write with my left hand but I'm pretty ambidextrous. When you go for physical therapy tell them that this is important. It's a strength and muscle control problem at this point for me. My hand is numb but I have a good grip but fine detail may take awhile. You may have some crazy handwriting for a while.
Let your professors know. I did. I do. I also have Psoriatic Arthritis specifically in my hands so I have problems anyway. There is Dragon speach recognition software that has come to amazing levels. Another option, that I took, was to get a new computer (I needed one anyway). I got the surface pro. Its touch screen, detachable so it turns into a pad, it has a stylus. It's perfect and has helped tremendously. I also contacted my Office for Student Services. They have students (I do this when asked) that will share their handwritten class notes with you. They just bring them to the office every week, scan them and email them to you. If you don't have this option... try asking someone in class to photocopy their notes for you. It's okay to ask for help.... so I'm LEARNING! Took me WAY too long to use the resources available. You can also (provided you get proper promission) record audio or full video of lectures with your computer.
Sorry I didn't report back sooner, I just moved. I hope surgery went well for you. Hopefully you're past all the ick. Sorry about the spelling. it's late for me. Working on school... Love to hear your progress. My surg was 3/27/17 so I may be some insight into what your in for.
Hope your husbands surgery goes well. I'm rooting for him! I just posted some of my post surg advice to emily. Maybe this helps. Feel free to ask me any questions as they come. They WILL come. lol I believe much of recovery is attitude and I was very determined, riddled with other health issues. Discipline is HUGE. You are going to have to be his cheerleader when he gets frustrated. He's lucky to have you. It's so encouraging to see that you're so involved. I love that. Props to you!!! Good Luck and Speedy Recovery!
Hi seth2940. I had my first op in Southampton General hospital when I was 12 I'm 49 now ,I've got two extra cervical ribs and had my right hand side removed twice and left once as they don't tell you they regrow ,I then had my first and second ribs removed Tommy back under my scapula which I can say don't ever have done I can't tel you how painful it is,,,you do notice a difference when you have them removed but the more ops you have the more problems you get with day to day problems ,I've now got a prolapsed disc between c5 c6 and arthritis ,hope this helps you and if you want to know anything else I'll be pleased to help I'm also female
Recovery is quite quick the younger the better just remember to keep moving you will have a stiff neck and will need to turn your whole body to just look around but it don't last long I've had removal three times now so I'm used to it plus I've had ribs removed from my back
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
I've had both sides operated on and my right cervical rib removed twice ,my first op was 1981,82,83 and then I had my first and second ribs removed from my back ,I would say it honestly don't take long to get over the operation a week or so but you just need to keep moving ,these days you would most probably have physio which I never had ,oh and by the way the ribs do regrow ,mine have grown back and I'm having problems again ,I wouldn't advice anyone having the ribs removed from back as it's the worst pain but I was running around within a week ,it's been a long time and I'm now 49 ,I still get some pain in my arms and haven't been able to throw without locking muscles in my neck for years ,my arms still go numb and paralysed whilst asleep ,hope this is of use to you
i am one week post op, it has gone very well for me. I was smiling after waking up from surgery, walked a bit up and down the hall that same night, was released the next day and am doing everything I need to (tho still taking it a little easy). There is still pain but it has shifted - I am sore - as would be expected - and there is numbness around the armpit that I hadn't expected. the hospital staff told me i bounced back quicker than most. i feel like the pain after surgery is minimal compared to the pain I had before!
Hi I had first rib resection in scalenectomy. It was one week ago The moment I woke up I knew something was different and in a good way so my surgeon saw me after and told me it was a success and he was very happy I just have to go in in one month to get my vein checked to make sure that it's clear so I had pagette Schroeder syndrome which is a bit more of a rare form of TOS. Nonetheless if you have a surgeon you feel you can trust I think it's worth going for because the relief I already have from having my rib removed in the scalene's cut I just don't feel that tightness in my neck and the pressure and the soreness near the vein in my arm. Anyway yes I am still on painkillers and healing but hoping for the best if anyone has any questions feel free !!
Love to hear your progress. My surg was 3/27/17 so I may be some insight into what your in for.