Thoracic outlet syndrome

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Hi had first rib and muscles removed 5 days ago now. (TOS) id just like someone who has had this procedure to tell me if there symptoms are totally gone was it a success? It seems a very long road atm. I'm still pretty numb all around from hospital. And lightheaded everytime I go to walk around which isn't for long because I feel I go to pass out. But op went as planned I'm glad it's all over, I'm 22 I thought I'd get up straight after and be all okay I was wrong I do pysically feel pretty rough painkillers only go so far but I can deal with a lil pain it's just the dizziness of getting up my surgeon didn't mention that was a side affect? So I'm hoping that goes away soon? Any insite would be greatly appreciated

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    I had this done on March 27, 2016. I noticed immediate improvement. It took some time to have full range of motion. My surgeon told me to walk my fingers up a wall until I could get above my shoulder. That took over a week. I think I know your dizziness thing. Sometimes I still get it, in spells. I try to remind myself that all the nerves etc are finding their new home... and settling in. It takes a while. I'm at about 4 months. I've noticed a HUGE difference although.... I still have numbness more so than pain. Neither are a percent of what it was prior to surgery. I'm 39 so  it takes me longer to bounce back, I also have Psoriatic Arthritis. Stay on it. I did Physical Therapy prior, my insurance crapped out now,  but I still do my exercises. That's super important. You want things to settle in the right places. The pain killers are also probably the dizzy culprit. Get up slowly, also try to find where the dizzy trigger is so you can discuss with the surgeon. Is it on standing? When you raise your arm up? Etc. Any problems breathing? This area they cut through is like a major freeway junction to nerves, veins, etc. Also why its' done by a Vascular Surgeon and not a regular surgeon. I've heard of lung punctures, etc. happening. This is pretty major surgery. Not sure If you've had surgery before but you're going to feel like sh*t for a good 2 weeks at least. Then it gets easier...

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      Hi. When you say you noticed immediate improvement, what do you mean by that? I've tried the fingers up the wall it's helpful thanks for that. Yeah 7 days today and I'm still dizzy as ever. I was on tramadol but they gave me heart palpitations I soon had to come off them lol. I'm now only on ibrufen, paracetamol, and codeen. I've kinda cut down on the codeen to see if that's what's making me dizzy.. Your 4 months in, yes I'd like to talk about the numbness, if you wouldn't mind. The inside of my bicep is totally numb and half of the back of my arm and obviously where the operation happened (under my pit) does it fade? Go away? Do you know if it'll ever come back (the feeling)?? Yes exercises every hour arm neck and hand movements also breathing exercises I was told to do.. When I'm dizzy it can be sitting up, going to stand up, walking around, even just laying in bed my head is constantly bouncing around, laying down for a while gives it a slight rest it's the best place for it. But I feel I can't move and am trapped in bed for the mean time! When I wake I get a horrible pain in my chest where it happend, my breathing is terrible when I take a deep breathe it feels like all my ribs are cracking like I've been run over by a truck! Also I dare sneeze or cough that brings on a world of pain. They told me to try and Hack up flem, ain't happening, I feel my chest is being drilled into when I do. I had 2 X-rays and blood from my main artery twice to check the scans where clear no problem no lung problem ect they did mention slight fluid around lung but will go in time?? Yes had surgery before but as a kid kidney reflux reimplantation can't remember it lol. I think I'm kinda past the pain it's the dizziness and numbness doing my head in.

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      I really had very minimal pain for weeks after the operation. I had vicodin to help but Tramadol and acetametaphen were my go to. I started school 4 days out of hospital. I would say the numbness is still primarily the only problem now. This gets better with stretching, exercises, and yes, sometimes I will sleep on the floor on my back. This may sound and look weird, but it helps me tremendously on waking. GETTING to sleep can be long and require ZQuil or ambien. Your target locations are the same as mine. Right now, for example I have numbness in some fingers, front and back of armpit on the inside of my chest. Exercising helps. I have had many days long stretches of no pain, no notable numbness interference. This is my Hope, that things CAN be respectably normal. One medication I've been pushing as my Savior is Lyrica. It's branded for diabetic nerve pain or Fibromyalgia and your insurance may make you try Gabapentin first but it's been key to my normalacy. I take 200mg 3x daily. The dizziness I had would hit like a wave and rush, I still have every once in a while. It turns my vision white and my head/face and ears get hot. It goes away pretty quickly but is a little uncomfortable, not to mention scary. Now that I know the feeling and am familar with it, I'm okay. Everyone will heal at different paces, every surgery is different, and anatomy's  differ. I'm sure you recognize this and you sound like me. I was itching to get out of bed asap!!! ...I'm also ADHD. Laying there worthlessly literally was driving me CRAZY. I believe the Vicodin helped mostly for that because it would put me to sleep. Just a thought, have you heard of the Epley Maneuver? You can do a google search, you should ask your doctor first if it's appropriate. I have personally witnessed this work for people with uncontrolable dizziness. The numbness DOES fade with time. I could FINALLY put dishes on the top shelf and blow dry my hair! Whoo hoo! This took about 1.5 months. Yah, it sounds like a long time but considering the horror I went through prior... GAME ON!

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    • Posted

      Also, Lyrica does help with numbness along with pain. It takes a few weeks? maybe longer to be plasma titrated (aka your blood plasma has the effective dosage). I have a pretty high metababolism. It kicked in fairly quickly. Gapapentin gave me a Gaba Hangover. I tried it on 2 occassions and doctors kept telling me to "give it time" or they would just add more pills. Not effective on MY behalf. It works well for others including my mom who LOVES it.  Because MY biggest problem is nerve numbness, I NEED something that targets NERVES. My surgeon who was AMAZING. Dr. Kaj Johanssen of Swedish Medical in Seattle, told me straight up also... Pain killers probably will not help much because it's structural and nerve related. They DO help with the surrounding issues. I feel Lyrica or something like Gabapentin are the best for these symptoms.

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    • Posted

      I will ALSO add, for the record, I had emergency surgery for a perferated ulcer in my Duodenum. 10 days at Harborview and 20 staples in my stomach about 2 years ago. Perhaps, my perspective is also skewed because this surgery was not so dramatic.
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    • Posted

      Yeah I don't have much pain it's just the rib crushing feeling when I take a deep breathe. Has your symptoms gone now and it's just the numb feeling left behind? How does it help you waking? sounds different lol.. But u say it helps?? Yea simular to me I get like a flush all of a sudden I'll feel dizzy and things start to move so I try make it back to my bed ASAP it seems when I get there it's a relief. But yes I hate laying in bed I thoughy it wouldn't be to bad (a little holiday) playing gta online. I'm now bored ********!! I want to get out, but it's to early. I feel ill make it a few blocks and collapse hopelessly lol. No I can't say I have heard of that I'll look it up. I can now do little things. (Pick up a cup of tea) so you say the numbness fades? Like around the bicep I pinch it I can't feel a thing,. Does feeling come back I wonder?

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      I was in hospital with some guy. I over heard the nurse say "have you been drinking plenty" he replied "yes 5 jugs or so" she then said "make sure you don't drink to much" this guy was then totally confused. He said "you tell me to drink plenty, then you say don't drink to much, what am I meant to do with that?" She also said the same to me.. What the **** does that mean?

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    • Posted

      My pain along with the numbness still comes and go for me. That's why I'm so hopeful. It's been crushing at times. I'll think "HELL YAH! I'm FIXED! Then a week later (typically sleeping on it wrong) I'll want to cry bc I'm BROKEN again. I was told that there IS a chance of permanent nerve damage. The numbness on the back side of my armpit is probably the last to fade. That seems to heal slowest for me. It's hard to explain to people the numbness this brings. I'm like, "I KNOW it's there bc I SEE it, I can MOVE it, but I can't really FEEL it." I'm sorry your dealing with this so young but you probably will heal well. Keep up with the exercises, it's important. I'm not sure WHY it helps me (sleeping on my back on the floor)... My BEST guess; gravity pushes things into the place the nerves, etc where they ultimately want to live.? I also have bilateral cervical ribs (the other side is shorter and not so bad) scoliosis and abnormal curvature in my neck (tech neck). Used to be a 3D animator/graphic artist so WAY more time on computer than healthy. TOTALLY THERE with you on the gta.wink I'm GAME_304 (that's Game_Hoe for oldschool pager users) if you ever catch me online playing. I'm NOT advising this but.... I stay standing when the flush, white blind & spin happens. I FORCE myself through it, grabbing support if necessary. It feels like I'm going to pass out. I have a hx of vaso vagal near syncope (aka almost passing out & actually passing out) so I'm probably more comfortable with this feeling than most. It has served ME well. LMAO... but I'm NOT exactly the best role model.

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    • Posted

      My breathing has now improved no longer feel a crushing rib feeling, thank ****, really. Yeah numbness still there for me it's still early days but I was also told before the op most likely permanent damage because of where they have to cut through?? But I had a second opinion and they said it CAN come back but who knows if it WILL, all I can do is wait, time will tell I suppose..... I was diagnosed with it at the age of 15 lol. I've trained since a young age at 14 I started to have problems then 15 he said TOS it took a while to find out what it actually was doctor after doctor they kept saying we can't say if it is definatly TOS until we cut you and have a look inside basically saying no scan or test can tell but everyone I was explaining to them they said TOS. So I kinda just went for the operation I am now 22 when I was younger it wasn't really an issue now I'm older the symptoms where to much hed always say can you live with it? Id say I have done.. So try these exercises I tried them for years didn't work for me. Got older and the symptoms had progressed I had to have the surgery it was the last resort but I was at my threshold struggling at work everyday life i would be moody angry so it's done and I hope it works. I have both sides trapped lol so I'm going back in about a month to get the other side done. FML. but gotta be done. So have you had all that sorted with your neck and ribs? Or do you need to go back in ect? I understand about sleeping on the floor lol I'll have to give it a blast. Kinda makes sence. Haha I shall give u an add! I have a PS4. I'm gunna guess your an Xbox guy. Most are lol.... Haha do you really? My dizziness and flushing feeling has kinda faded I thought it never would it seems to be fading day by day TOUCH WOOD IT IS. I really hate being dizzy I also will not surrender to it I'll carry on through the dizziness untill I go to fall.... I get really annoyed with it all I don't wanna be in bed I wanna go out I wanna do things this dizziness and pain is going slowly I can feel it but not fast enough I have something similar to ADHD also lol but not flat out. I get spells of certain things in my head and it's crazy lol I can't sit still put it that way drives me insane to say the least.

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    • Posted

      Hi quick question if u don't mind.... I went out lastnight for the first time since surgery just up a mates house for litro two hours. Felt rough room was spinning so came home. Woke up this morning, my body was like a dead weight, I could hardly move. I was in like a Stonned state, and also all of today I feel like I haven't slept for a whole month? Any idea why this is? I was doing great felt I could go out but now I feel I've been knocked back a few days....

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  • Posted

    http://patient.info/forums/discuss/browse/cervical-rib-syndrome-447

    I'm not sure if you can see this or not but it's a whole list of discussions about this very thing from myself and others.

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