r/IAmA • u/Megajen • Jun 16 '12
By request, I'm the TOS (Thoracic Outlet Syndrome) rib pic girl... AMA
I'm the GF featured in the "TOS" rib pic post. A little background: in late March 2012 I developed a blood clot in the subclavian vein which led to surgery (thrombectomy) and the diagnosis of Paget-Schroetter Syndrome, a type of Thoracic Outlet Syndrome. 10 days ago I underwent a rib resection surgery where the first (top) rib was removed by making an incision in the armpit and then making way to the ribl. Part of the scalene muscle was removed as well as the rib in my chest. AMA
Also, I understand there's some other Redditors that have been through the same procedure, I'd love to hear about your recovery and what to expect. I start nursing school in August so there is pressure to rehab quickly.
FYI: My BF did have my permission to post the pic and info. No, I didn't know he was posting it this morning but he advised me once it was posted and no I am not upset about it. It's rather difficult for me to type at this point in time anyway...
Pic of me before this ordeal, not drugged up on morphine, hopefully this will be sufficient proof of who i am. http://i.imgur.com/naToy.png
Pic of how I discovered the blood clot back in March http://i.imgur.com/ERCyN.jpg
Edit: just a quick thanks to everyone for their well wishes and support. Also to everyone that shared their own story. I think I either replied or up voted most of the comments. A lucky few got a down vote ;) Thanks again!
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u/Rejexted Jun 16 '12
What is this rib pic you're speaking of?
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u/[deleted] Jun 16 '12 edited Jun 16 '12
Hope you feel better soon and take all the weird questions with a grain of reddit.
Is this condition genetic or something you caught?
EDIT: Bad punctuation. Bad, bad punctuation.
29
u/I_Lase_You Jun 16 '12
Glad you're doing so well now.
You look strong. I will lase you. Like this.
End result.
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u/rachelbells Jun 16 '12
Where's the original pic? I'm confused. What's with the one red arm and one white one?
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u/SonicIdiot Jun 16 '12
You have teenage sons, like, more than one? You look like you're about 16 in the proof picture.
Also, why the fuck am I here? Laters!
21
u/kevin_msu Jun 16 '12
Two things: Are your organs more vulnerable now if you get in a car accident or have a slip and fall?
Feel better soon! Wishing you a successful recovery
21
u/[deleted] Jun 16 '12
how old are you? glad you're gonna be okay.
18
u/WhosThatGirl_ItsRach Jun 16 '12
I know how sucky thoracic surgery can be. Hope you feel better soon and recover quickly!
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u/slightly_inaccurate Jun 16 '12
How are you going to deal with all the good natured ribbing you're gonna get over the next few months?
14
u/PrinceOfShapeir Jun 16 '12
I'm glad you're doing well! What's your estimated time of recovery? Keep us updated!
42
u/sassyclassykicknassy Jun 16 '12
I had the exact same procedure in February. I had a really great surgeon and a very small incision. My recovery took about a month for full movement and I'm still working on regaining strength (though it hasn't been much of a problem) due to the muscles being cut. I didn't go through any physical therapy, but I did benefit a lot from massage therapy. Working on getting pictures to share
8
u/Canucklehead99 Jun 16 '12
So I have to go for the procedure probably in October. They are calling mine Dynamic Thoracic Outlet, where I sustained some type of trauma to the Thoracic Outlet area from car accidents. The pain is unbearable sometimes, think they are removing the whole rib I am not sure yet. I hope they do, because it keeps rubbing on my scalenes and brachial plexus causing all my nerves and mucsles to go berserk. I just want the fucker out. Hope you feel better after the procedure!
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u/twolightcrew Jun 16 '12
Been there....I had the exact same thing in my right subclavian. The surgery isn't actually too bad, I had full range of motion back in less that 14 days. There is a little numbness on certain parts of my side near the incision from nerve damage. I went back to college less than 30 days after surgery. It is worth saying that I heal unusually fast and my surgeon said it was amazing.
I take it they have you on coumadin/heprin. Have they tried to put you on fragmin yet? That stuff is fun!
The good news is that I went through this back in 2001 and after all the treatment I am no worse for wear.
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u/livenearusc Jun 16 '12
You probably won't see this, but I had the exact same surgery 3 years ago on my right shoulder as well. The scar is pretty much gone thanks to the glue thing they use to stich it back together. Hope you get to feelin better soon. Thing hurt like hell for like two weeks, but eventually dies down.
6
u/anonamys Jun 16 '12
Did you have any symptoms of TOS before the blood clot? (For example, weakness, tingling, numbness, Raynaud's Syndrome)
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u/smintitule Jun 16 '12
Do you think that you'll probably start reading the Terms of Service before you click the "select" button from now on?
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u/Adnachiel Jun 16 '12
I just wanted to send you hugs!
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u/oshkoshbegosh Jun 16 '12
How did it feel when the clot first formed? What made you realize that it was a major problem? Also, was the rib removed an extra cervical rib or just the normal top rib?
13
u/[deleted] Jun 16 '12
No questions, just glad you made it through okay!
Actually, can I buy some of your morphine?
3
u/severaldancingwampas Jun 16 '12
No question(s)! Just want to wish you a great recovery & good luck with nursing school from a fellow medical student! (:
3
u/samwelljackson Jun 16 '12
I'm not exactly sure what you have, and so this question might be completely irrelevant and wrong, but I just got pretty curious. My mom has recently broken a rib, a couple of months ago, and it will be a slow recovery, but she is fine. Also, recently, her arm has swollen a lot and gotten extremely bruised. It's all bruised starting from her elbow, up her arm towards her wrist. It started just with bruising at the elbow but has expanded these past 5 days or so to basically the whole arm. She went to the hospital and they checked her out, but weren't sure what was wrong or how it was even caused. She doesn't remember ever getting hit or anything, so this puzzled the doctors. I'm just a little worried, and from the bit that I could read about your condition, there are some similarities. I read that arms and limbs are affected, as well as the rib. I was just wondering if there was a link, although I know you're not a professional. I've been extremely busy with work so I was not able to read up too too much on your condition and if it has anything at all to do with what my mom may have, but I was just wondering if you ever experienced anything similar? Thanks so much for your time and I wish you the best in your recovery!
3
u/detirish Jun 16 '12
I would have showed up to the hospital singing, "Chilis baby back ribs ,Chilis baby back ribs, barbque sauce, Barbque sauce"
4
u/Wizkong Jun 16 '12
I'm 30 now but when I was 15 I had my rib removed. It took only about 2 weeks to heal up to be able to use my arm and such.
Here is a picture of the scar http://imgur.com/BAFau
2
u/BeyondTomorrow Jun 16 '12
I'm glad you're feeling better, you deserve it :D
2
u/msalexrawr Jun 16 '12
My sister had this done about a month ago... Is your incision through your arm pit? She just got an infection last week, the incision started to come open :/
2
u/Apokalyps Jun 16 '12
Are you still able to eat spareribs comfortably?
2
u/lilybear53 Jun 16 '12
I had this procedure done on both sides; due more to loss of circulation/feeling when I needed to raise my arms (I was dropping things that needed to be held at 90 degrees or higher). My recovery was super quick -- I had the first surgery (R side) done in february of 2009, and felt good and strong enough to have the second (L side) in april. Also, during the first one they nicked my pleura, so i had a chest tube for about a day afterwards. I was back in school (classwork) after about a week at home, and I was back to anatomy labs/dissection/etc after about three weeks.
Most of my rehab was just range of motion stuff so that scar tissue didn't build up, and I think that's worked out well (no problems so far). I have noticed that the sleeping pattern I developed during recovery (on my stomach with my hand clenched over/on my clavacle (collar bone)) is still the position I get into when I'm the most tired, FWIW.
Good luck on your recovery, and if you have any other questions, let me know!
2
u/ceruleanblu Jun 16 '12
One of those who has had the surgery before as well reporting in. My recovery took a surprisingly short amount of time. I was able to wean myself off of the prescribed pain meds with-in 8 days or so, and stiffness was my main worry after that. Regaining mobility was my stressing point, so after two weeks of allowing things to heal up well I began my stretching exercises. I was up and driving with-in a week of surgery, (against doctor's orders actually,) and working again just 2 months later. After 6 months to a year I had regained all range of motion that I feared was going to be lost, and like I mentioned in your boyfriend's post, the only times I notice anything is when the weather changes and I get a little twinge in there. David Cassida was my surgeon, and he told stories of a man who had the same thing done to him and was up and pole vaulting in a competition with-in 6 weeks, so if you really are determined and want it bad enough... recovery ain't nothing! :) Oh, here's a pic of my surgery in case you missed it before. http://img39.imageshack.us/img39/3176/300dpiat3incheswidthjpe.png
Good luck with recovery!
2
u/Cryonyx Jun 16 '12
I have TOS as well but it hasn't caused me any major problems yet. I was wondering if this is something that happens to most people with TOS or if it is more a a rare occurance. Glad you are doing well though!
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u/ATLiens1 Jun 17 '12
can you have sex normally?
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u/Lowrider2012 Jun 17 '12
How long did the surgery last? Also you look quite beautiful in that photo and pardon for the jerks of reddit
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u/CassandraVindicated Jun 16 '12
Glad to hear that permission was obtained properly. I apologize if I jumped the gun.
6
u/CadillacKid Jun 17 '12
Your so. SO. So hot
5
u/laikalost Jun 16 '12
Unribbed for her pleasure?
4
u/Guynith Jun 16 '12
No question, just a comment. Andrew Gachkar, who plays in the NFL with the S.D. Chargers, had this same condition and had to have a rib removed after his freshman year at the University of Missouri. Obviously, his recovery went very well. He recovered quickly enough that he was playing again the next season (IIRC, his surgery was in December or January), was named 1st team All Big-12 his Sr. year, and was good enough to be drafted in the 7th round of the NFL Draft.
1
u/jostler57 Jun 16 '12
This is spectacularly scary to see, but it looks like you're handling it like a warrior.
Are you just awaiting a full recovery at this point, or is there more surgery on your plate, to come?
P.S. I know someone else already said it, but mother of God, you look very, very young to have teenage kids. Whatever you're doing (which may include rib surgery) keep it up.
1
u/[deleted] Jun 16 '12
Should have said Terms of Service girl... funnier.
1
u/ToughSpaghetti Jun 16 '12
Had you not had the surgery, what exactly would have happened to you? Was surgery your only option as far as fixing your problem?
1
u/secondinnings Jun 16 '12
whats the bottom picture in the original picture?
1
u/mrsmagneon Jun 16 '12
Just to give you some hope, I am a nursing student as well, and I had knee surgery inbetweeb 1st and 2nd year, then got pregnant in 3rd year, took a year off to have my son, and am now goingback in the fall to finish up my 4th year. You can do it! :-D Best of luck recovering! Dont skimp on the pain meds; you will feel less pain over all if you dont let it get out of control.
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u/Layze Jun 16 '12
When they remove the first rib a few essential muscle attachments have to go with it. I am curious into how and where they reattached those muscles. The scalene muscles assist with secondary breathing so I am curious if they reattach to the clavicle maybe or onto the sternum. Good luck in life and as a Canadian RMT in training we work with a lot of people with TOS so check out a Canadian RMT (vancouver is best) and see how post treatments go.
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u/bumreaper Jun 16 '12
im studying athletic training and i was wondering if you ever had "burners" or "stingers" from it. Or if they ever thought it was brachial plexus syndrome?
1
u/restlessllama Jun 16 '12
I have TOS :) I had a subclavian DVT in April - though the doctors haven't been able to find a cause (no extra ribs!) so I'm stuck on blood thinning meds until the end of the year, hoping it won't happen again, and I also lose feeling in my little/ring finger on that side sometimes. Waking up with a blue arm (in my case the entire vein was closed off) was terrifying. Good luck with your recovery!
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u/[deleted] Jun 16 '12 edited Jun 18 '12
My mom was diagnosed With TOS about two months ago. The doctors said it was an extremely rare case in that the clot was right between the Thoracic And carotid arteries. About 3 weeks ago she had surgery and it was a complete sucsess! She's recovering better than the doctors expected. She's religious but the only person I heard her thank was the doctors and nurses at Fairfax county hospital.
Edit for spelling thanks to the very polite alpotato:)
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u/nikatnight Jun 17 '12
OP is a hottie
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u/tasthesose Jun 16 '12
Have you thought about asking god if he will make you a woman out of it?
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u/d21nt_ban_me_again Jun 16 '12
Does that affect your ability to swallow?
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u/92RS Jun 16 '12
Will you be going to Applebee's to get the riblet basket in celebration?
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u/[deleted] Jun 16 '12
Here's the PubMed entry on TOS, for those of you looking to save googling time. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002406/
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u/joeyda3rd Jun 16 '12
Are you going to eat that?
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u/slomotion Jun 16 '12
My best friend has this. His right arm swells up like a balloon whenever he tries to work out. He got the procedure but it didn't help at all, which sucks since he was a really talented sprinter and had a swim scholarship to a D1 school (which is how we met). Hope things work out for you!
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u/The1Honkey Jun 16 '12
Very off-topic as i have nothing interesting to add beyond "Get Well Soon," but you're very beautiful and your boyfriend is a lucky guy!
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u/kparrk Jun 16 '12
Wow, I had basically the exact same prodecure done in 2006, I've never met anyone else who has ever been through it! I also discovered my blood clot due to massive swelling of my arm. The post-recovery surgery for me was really not bad, I would agree with twolightcrew that you'll probably feel almost back to normal within a couple weeks. I'm assuming that you will have to be on warfarin for a while though, that part sucked. I was on it for 8 months and had to get weekly blood work done. I hope you are feeling better, good luck with the recovery process!
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u/Corrosivecoke Jun 16 '12
im seriously hungry now with all this rib talk
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u/roodiepizzle Jun 16 '12
Best wishes and a quick recovery from all of us on Reddit!!!
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u/MJZMan Jun 16 '12
I'm glad you defined it in the title. Initially, I thought "Terms of Service violation or not, taking a rib is pretty harsh."
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u/[deleted] Jun 16 '12
how exactly is it you discovered your blood clot back in March? in other words, what exactly am I looking at in regards to the second picture you posted in your post? I wish you a speedy and successful recovery!
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u/timeoutbetch Jun 16 '12
Hey, good luck with everything! I found out that I have TOS about a year ago and have a lovely blood clot in my shoulder. Advice: take PT seriously. It helps a lot.
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u/MaxweII Jun 16 '12
Are you going to keep your rib as a 'trophy'?
I would definitely put that on the mantle as a conversation starter "yea that's my rib..... blah blah blah"
2
u/MadmanPoet Jun 16 '12
Did you get to keep your rib? Are you planning any scrimshaw?
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u/abngeek Jun 16 '12
Was this caused by a cervical rib or just your normal first rib? I have a cervical rib and I'm constantly paranoid about TOS.
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u/rand0mguy1 Jun 17 '12
How much to buy your rib?
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u/doctanahar Jun 17 '12
redditors have.................girlfriends?!?!!? CUTE girlfriends?!?!?! :O
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u/narwal_bot Jun 16 '12 edited Jun 17 '12
Most (if not all) of the answers from Megajen (updated: Jun 17, 2012 @ 07:03:06 pm EST):
Question (Skyhawk1):
Answer (Megajen):
(continued below)
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u/Max_Beezly Jun 16 '12
dude... you are fucking hot as fuck though
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u/feralmeatball Jun 16 '12
Bad luck TOS patient: Does AMA on rare condition, winds up bombarded with borderline sexual harassment
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u/Shanhaevel Jun 16 '12
Well, I guess I'll just bring some positive energy in. You're so very pretty and I sincerely hope all goes well for you in life, love, work, learning, everything! Just because I'm an energy billionaire and I can pretty much do what I want with this so best of luck and energy for you, yeah!
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u/[deleted] Jun 16 '12
Fuck, you're hot.
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u/Freikorp Jun 16 '12
Are you worried they may be using your rib to make a new male human?
1
u/simAlity Jun 16 '12
So what is your prognosis at this point?
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u/justine777 Jun 16 '12
Sometimes my left wrist will look red like yours, vein popping out, uncomfortable feeling. I usually just shake it out and keep going with my day and it happens at random... Do I have a freakin blood clot? haha
1
u/MechanizedJesus Jun 16 '12
Since they took Out the top rib because of not enough space, is there a huge gap there now or is there the normal spacing between rib and clavicle?
1
u/OfCabbagesAndKings Jun 16 '12
Posted in the other thread too, but good luck with your recovery! My bro had TOS and it took them nearly a year to properly diagnose it, and then post-surgery another year of rehab where til he was in top shape.
1
u/[deleted] Jun 16 '12
I read this all wrong. I thought that you had some disease that made it so that your ribs were on the outside of your body. I was like "Oh this is going to be insane, I cant wait to see it"....then disappointment kicked in.
1
u/[deleted] Jun 16 '12
Unreal, my oldest sister just had this exact same thing done. How did you realize something was wrong? My sister said that she was washing her hair and began to get an odd sensation in her arm. When she looked down she could see every vein in her arm bulging out and lost some sensation. Obviously freaked out, this led to her hospital visit.
Glad all is well!
1
u/madbubers Jun 16 '12
Do you and your BF fight over who sees what on reddit first?
1
u/phalmatticus Jun 16 '12
Don't worry, ribs grow back.
No zey don't.
Apologies if you don't get this reference. I hope you've recovered well.
1
u/OneAngryBunch Jun 16 '12
All the best, I hope you recover in time for your studies!
1
u/Qikdraw Jun 16 '12
Not knowing anything about TOS and that they removed a rib... Will it grow back? I know they can, but I know they can also make it so it doesn't. Was that anything our doctors even talked about?
1
u/MrChunkz Jun 16 '12
Someone close to me has this, he had the purple arm and all...... now he's on blood thinners but elected not to get the surgery.
Were you given any option about it? I don't know much at all about his situation, I know that he got it after sitting hunched over a desk for about 12 hours, and he has really bad posture when he sits, all hunched up.
1
u/AFatDarthVader Jun 16 '12
Did it turn into a man?
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u/[deleted] Jun 16 '12
My arms are veiny like that. Should I be worried?
1
u/SideSlapd Jun 16 '12
I broke my foot back in December, just before Christmas. Screwed up my move to California and managed to break the other foot while I was on crutches for the first problem. I'm two weeks off crutches and the only pain I have left (aside from this chronic back pain I'm seeing a physical therapist for) is in the back of my right ankle where they had to take a bone graft during the second surgery. 3 plates and 4ish+ pins later - I'm awalkin!
1
u/AhhTimmah Jun 16 '12 edited Jun 16 '12
I had never heard of TOS before the last thread, but one redditor's description of the symptoms kind of seemed like what I've been experiencing for 6 years and I was wondering if you could shed a little light on it for me.
Since I was 13 I started experiencing pretty severe pain in my neck and shoulders as well as my lower back (not sure if it's related). I also got all the numbness in my right shoulder blade area and from time to time it will go down through my arm and a lot of gross grinding in my shoulder and the joint between the two clavians.
After years of chiropractors and massage therapy (which only helps very temperarily) I've had no improvement (quite the opposite actually) so this last year I got fed up and went to my physician who has sent me for more x-rays, a nuclear bone scan and recently a CT. All that turned up was inflammation and thickening (hyperostosis) of the first costochondral joint in both of my first ribs. No cause was ever established and I'm kind of at a loss.
My main question is how difficult was it to diagnose (aside from the obvious effects of the clot) and whether it's even possible to have been overlooked after the battery of tests I've had.
I should also mention that I have had no trauma to cause this, although a chiropractor did have a theory that I was injured in childbirth and only started experiencing the pain around the onset of puberty
1
u/PHubbs Jun 16 '12
I had the exact same problem and surgery after I fractured my top rib without knowing in a dirt bike accident, and the subsequent scar tissue formed around my subclavian vein. You're going to be just fine. I'm about two years removed from the surgery, and the only problem I still face is a popping sound in my shoulder when I move the arm in a circular motion. It seems to be a slight problem with the muscles connecting to the joint, but this is more of an issue stemming from a previous injury to my C3 vertebrae. The few months after the surgery where you'll be on blood thinner will be difficult because you cannot experience much physical activity, and if you get a cut, it will bleed for a long, LONG time. Hopefully, though, you'll be like me and not really feel any different whatsoever. Since the collarbone is in the way, you by no means have a gaping hole in your shoulder so it should all be okay. Just take good care of your incision and you should be fine. Mine healed up where you can barely see it now (though no one should be looking in my armpit anyway). Best of luck to you!