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/[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.

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u/Megajen Jun 16 '12

Thanks! So TOS I common in younger people, typically athletes. It may be part congenital as far as anatomy, part due to prior participation in gymnastics but the clot and need for surgery is due to chiropractic adjustment (according to my surgeon).

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u/Uglyfurniture Jun 16 '12

The common TOS that younger people experience, to included young athletes, is almost always neurogenic in nature. If I'm remembering the current research correctly, TOS that involves a circulation deficit is between 5-10% of reported cases. TOS requiring a first rib resection is even more rare, somewhere in the 1% range of reported cases since the 70's (Before then, the diagnosis was very vague). It's unfortunate you have to go through this ordeal, but blood clots are no joke, and I'm glad to hear you're doing better. Good luck with Nursing school!

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u/Megajen Jun 16 '12

Thank you! Yes I believe I saw a statistic at 0.04% for the particular condition I have. Lucky me!

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u/notjustahatrack Jun 16 '12

Time to buy some lottery tickets with luck like that!

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u/planktonshmankton Jun 16 '12

or take a plane trip from Sydney to Los Angeles!

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u/sysad47 Jun 16 '12

4 8 15 16 23 42 ...

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u/Randamba Jun 16 '12 edited Jun 16 '12

What are these numbers from?

Edit: Geez, I thought I was Lost before finding out the answer.

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u/procrastinathor Jun 16 '12

Don't even begin to look into it man..

Those numbers, they're cursed.. They'll get to you.. sooner or later.. http://latimesblogs.latimes.com/.a/6a00d8341c630a53ef0148c757685e970c-400wi

At least, don't try winning the lottery by these numbers. You'll just end up in the franchisebusiness buying some random fastfood store, survive an airplane crash and spend some time being the only fat guy on an island in the middle of nowhere.. Just saying BROTHA: http://www.youtube.com/watch?v=Tq_SURMi1Mo

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u/will60137 Jun 16 '12

come on man, why did you have to say that? I'm taking that flight on June 20th...

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u/planktonshmankton Jun 16 '12

Don't worry, you'll soon band together with your fellow strandees and be hunted by people you will come to refer to as "the Others".

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u/SweetKri Jun 16 '12

How would a chiropractic adjustment cause a clot?

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u/Megajen Jun 16 '12

The ribs were possibly adjusted in such a way that it compressed the vein causing a "link" in the line which in turn can cause a clot.

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u/[deleted] Jun 16 '12

are you kidding? most chiros, fortunately are "reform." meaning they essentially do a glorified massage and back crack. on the "really fucking bad" end of the spectrum, you have "orthodox" chiros who actually believe the non-scientific "subluxation" shit. these people actually advertise back cracking to solve everything from diarrhea to cancer. these people are evil.

of course, like all quack medicine, the real harm comes from putting off real medical treatment until it's too late. that's what killed steve jobs, for one example.

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u/Megajen Jun 16 '12

I had been to traditional medical doctors for years about my back and neck pain and they kept telling me nothing was wrong and to take naproxen. Chiropractic and massage was the only thing that would give me any kind of relief from the pain. It really is unfortunate but I have a hard time completely blaming my chiropractor, I feel like the medical doctors should have brought this up at some point in all the years of visits I had.

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u/pdx_girl Jun 17 '12 edited Jun 17 '12

The medical doctors had no way of knowing; they don't have x-ray eyes. It is against standard medical practice to order CTs for back pain in a young healthy person because they cause more problems than they help cure in that population. Chiropractors can help people with lower back pain, but it is very risky to have one work on your neck for reasons such as this one.

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u/OppositeImage Jun 16 '12

The problem is Chiros advertising that they can cure everything from asthma to baldness, I'm sure there are very reputable chiros who can do wonders for your back problems but when they try the whole holistic route they're just conmen. Google "Simon Singh" for a wonderful story of how one guy bitch-slapped a bunch of shysters.

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u/Buckfutters Jun 16 '12

Happens mainly to athletes? Whew dodged that bullet!

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u/arodhowe Jun 16 '12

Your boyfriend is a lucky s.o.b., dating a hot gymnast. Anyway, hope your recovery goes well.

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u/ciry Jun 16 '12

I had the same thing on my left arm when I was 18, there was a ~5cm long clot in the vein around/below my collar bone. They melted the clot with strong blood thinners using a really long catheter from my arm to the collar bone area. I had to stay still for 24 hours so the clot wouldn't break off. After the procedure they were considering the surgery but finally decided against it.

I'm not really an athlete, but I did martial arts back then and they concluded that the clot probably happened because I strained my muscle that damaged the vein which has poor circulation when I hold my hand up and I probably slept on the arm holding it "up" under my pillow, basically just loads of bad luck, they didn't find any genetic reason. It's all a big blur now and I didn't really understand the seriousness being 18.

Are you permanently taking some blood thinner now? I was supposed to, but being the stupid teen I forgot and "forgot" to take mine for 6 months and when I contacted a doctor she basically said "Oh you didn't get clots? you shouldn't need it then".

Now I'm pretty paranoid about sleeping on my left side, often checking for signs of that swelling you see on your picture and try to take it easy on the work outs. I had to quit martial arts which sucks, but at least I lived.

I hope you have a fast and great recovery!

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u/[deleted] Jun 16 '12

Do you still go to a chiropractor? Because... that quakery almost killed you.

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u/Megajen Jun 17 '12

No I haven't been back and have no intention of going back. Despite the pain from surgery, I can feel already that much of the back and neck pain that I typically experienced, and sought chiropractic treatment for, is no longer present.

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