First off, I'd like to say that I'm so excited I found this website as I feel like I have no support whatsoever.

At the end of November, I started having shoulder pain in my right arm every night that was so bad it would wake me up. Bursitis, I thought, since that is what it always was when my shoulders got like this. I mean I have been to the ER or doctor's office several times for shoulder pain in either my left or right arm and that is what they always said. But this time, my hands started going numb. My hands had gone numb before, but I always dismissed it as pins and needles and it was never to this extent. It wasn't just my right hand (where the pain was), but it was my left one too. I noticed it was whenever i had my arms raised or when i was sleeping or just waking up. I took a trip to the ER. They looked at me like I was crazy when i described my symptoms and quite honestly, i felt like i was crazy too!

I was seen by a PA who told me well, there are several tests we would have to run to figure out what's going on, but we'll start with an x-ray. I was upset because i knew i hadn't injured myself. what good was an x-ray going to do? Several minutes later, he comes back and he says, "I think we might be on to something." He takes my radial pulse, then tells me to turn my head a certain way. When I did, the pulse in my right arm disappeared. The PA, stunned, says well I think you might have what is called thoracic outlet syndrome (TOS). Your x-ray shows you have two extra ribs, called cervical ribs, on your c7 vertebrae. Then, he goes on to explain a little more about it. That is the first time I have ever heard of such a syndrome and i was beside myself with hearing i had 2 extra bones that literately made me 'one in a million'. They also said they thought I had carpal tunnel syndrome to which i asked, "well why is the pain in my shoulders?" He didn't know what to say. He consulted several doctors while i stayed in my exam room and when he came back he told me that they wouldn't confirm a diagnosis of thoracic outlet syndrome based simply on the cervical ribs and the fact that my pulse disappeared. they sent me home with steroids and naproxen (both of which temporarily helped and when i say temporarily, i mean like an hour or 2). they sent me home with the diagnosis of carpal tunnel and put 'rule out TOS' on my dismissal paperwork.

When i went home, i started doing research on TOS and I am 100% convinced that is what is going on and it also has been effecting me for many years in various ways that i didn't even realize. I had a migraine for more than 2 weeks straight. I had a CT scan, x-rays, MRI, and saw a neurologist, all of which came back normal. it wasn't until i saw a chiropractor who adjusted my neck and upper back, that i was able to get the migraine to go away. I have been diagnosed several times with bursitis in the shoulder after seeking medical attention for extreme pain in them with no injury. i have also never been able to lift my arms above my shoulder for more than a couple minutes at a time without my arms just giving out and dropping. i thought this was just the way it was.

I followed up with a regular doctor who prescribed me nothing for the pain, however he did refer me to physical therapy and a neurologist for testing. I am currently doing the physical therapy, but it isn't doing any good as my symptoms are just getting worse and they effect me every day of my life.

The neurologist did some nerve testing on both arms and then he said, "you have carpal tunnel syndrome. it's going to require surgery. you may also have TOS, but that doesn't involve the nervous system, so i can't help you there." REALLY?! i got out of that office and never looked back.

One more trip to the ER because of right forearm swelling up like a balloon landed me with wrist splints that they use for carpal tunnel. They do help with the numbness. I only have tingling in the morning in my ring and middle fingers as compared my whole hand being numb. The doctor there looks at me and says," you should get t he carpal tunnel treated first, because hopefully that will work. the surgery for TOS is horrific." horrific.... that word won't leave my mind.

I am still in pain every day. The pain moves around from my collar bone area, to the front of my shoulders down to my forearms and all the way to my finger tips. I get swelling mostly in my right arm and sometimes i get random bruising on my arms and wrists. some days are better than others. on a bad day i can barely function properly and my fingers get stiff like and make it hard to grip. when my right is hurting bad, i compensate with my left. Then, my left starts to hurt bad and i can't compensate with my right because they're both in pain. I feel disabled. I feel frustrated for lack of a better adjective. the doctors cannot seem to see past the carpal tunnel syndrome to see the bigger, less common, problem. Perhaps they're right and i do indeed have carpal tunnel, but it doesn't explain the pain the rest of my arm up to my collar bones. it also makes no sense that they hallmark of CTS is your thumb and pointer finger going numb. The finger that always go numb on me first is my ring finger and the nerve to the ring finger does not run through the carpal tunnel. I feel alone and depressed. I feel like no one is taking me seriously and no one understands the kind of pain i am in everyday (especially my job). And if doctor's don't know how to help me, then who is going to?!

Do you guys think from what I'm describing, that i have TOS? What kind of specialist should i be seeing? is it possible or even likely to have both carpal tunnel and TOS? Did physical therapy even work for you guys and if so, what kind of excersizes worked for you? any other advice or suggestions would be so appreciated. thank you for taking the time to read and make me feel like I'm not alone. Lisa

Hi Lisa,

Many of us here have been through a similar journey. You need to see someone who KNOWS, not kind of or heard of, but KNOWS, TOS. I got no help and lots of "I don't knows" until I saw a TOS specialist. Use the stickies at the top of the board to find good doctors in your area who know about this. There are many steps toward treating this but it seems that only the doctors who know it intimately say and do the right thing, particularly when it comes to treatment and surgery.

My Doctor, Dr. Donahue at Mass General in Boston is one of the top surgeons who do this, and until I saw him i was lost. He is the type of doctor who tries everything else before surgery before proceeding.

I believe that you will save yourself a lot of time and frustration by immediately seeking out one of the top doctors near you, again see the sticky and see what others' experiences here have been with that doctor.

You will find that Dr. Donahue is one of the top doctors discussed here, and I believe he will facilitate long distance treatment (with a few trips of course). There are other of these top TOS doctors, but please, stop seeing people who don't know how to treat you.

Dr. Donahue at mass General gets my endorsement (do a search, he has a bit of a fanclub here), but there are others as well.

Keep reading and don't be bullied by doctors who at the end of the day may just be dancing around the fact that they don't know how to treat you.

Please keep reading and posting, there is TONS of support here.

Hi Lisa,
Please have hope there is help.

Check these 2 lists:

http://surgerydept.wustl.edu/TOS_Consortium.aspx
for TOS Specialists

http://www.instituteofphysicalart.com/ipa/referral/list
For PT's. some of them are familiar with TOS. Some of the listings are old and have moved, but some of us have found good pt's this way.

There are other lists and recommendations as well if you read through the stickies.

Also if you tell us where you live and we can help direct you to the nearest specialists. It is of utmost importance and a relief of sorts to get the correct diagnosis. There is no 1 test but several that can point to a diagnosis. There is help out there-but it is not easy to find.A good specialist familiar with TOS can send you to get a nerve test to see if you have carpel tunnel, but TOS often does not show up. You can also get a Brachial Plexus MRI and most importantly the physical exam can show signs of TOS if the dr knows what to look for. The best test is usually a scalene blockfor neurogenic symptoms and there is also a MRA for arterial symptoms. I dont have arterial or venous symptoms so I have not had an MRA.

It does sound like TOS, but you can also have carpel tunnel or disc issues called"double crush syndrome". Usually TOS will affect the pinky and ring finger and not the thumb and first finger. Carpel Tunnel can also affect the shoulders. Almost everyone has trouble getting a diagnosis and tried several dr's. pts etc. I tried many and in fact some ,pt and chiropractic will make it worse if the pt is treating the wrong thing or if they dont know how to treat it. For instance traction can make TOS worse.

These are only my opinions based on my own experience. You can read my thread JKL's Journey for more detailed info.

Take Care-there is help out there-JKL

I just recently was diagnosed with the same exact thing (2 cervical ribs coming off my C7 vertebrae, which they said was definitely TOS) after going to the ER with my left arm hurting. I ended up having blood clots and had surgery to remove most of them. Like you I had no idea, and my only other symptoms were my hands going numb and tingling when I was sleeping or waking up in the morning. Needless to say I am completely freaked out about this whole situation. I am only 33 and live an extremely active life, however I am now a blood thinners to prevent another clot from forming which is keeping me from doing anything active except for jogging, boring right?. The doctor basically told me that I need surgery to remove the ribs, and only then will it be safe to live my life without the blood thinners. I just joined this site searching for answers myself. Hopefully we can both find some.

Yes, you could have carpal tunnel and TOS and that's known as Double Crush Syndrome. But actually, if you mentioned ring finger, that sounds more like ulnar nerve (cubital tunnel). I'm not a doctor so I don't know what you have but you can Google Double Crush and see what it says. Some TOS people have an arm surgery after their neck compression issues are resolved. I have a bending up ring finger that has me a little worried I might have Double Crush.

Extra c ribs + swelling plus the other symptoms = seek out an expert vascular surgeon.

Probably an MRI would be rx'd to better locate & measure those c ribs and check for any other anomalies.

Our DRs & PT list-
http://neurotalk.psychcentral.com/thread135.html

If you are unable to easily get to one of the recommended doctors on the sticky thread and you are just looking for a bit of confirmation before spending money on airfare to see one - you can call around to your local neurologists/vascular offices and ASK THEM "Does your physician have experience in diagnosing Thoracic Outlet Syndrome?" If they even HESITATE, don't bother to go there. I got very lucky to have a doctor in po-dunk backwoods Alabama who is familiar with this. He is a neurologist and just working on the diagnosis part, at the moment, but he knows what TOS is and has been ruling out other possiblities (pinched nerve, carpal tunnel, etc) before I spend my entire life savings on airfare to seek out a TOS specialist.

You can have TOS & Carpal Tunnel simultaneously. I was diagnosed with Carpal Tunnel years ago and had surgery for it. After the surgery, I continued having pain/symptoms but my EMG/NCV tests were coming up negative for Carpal Tunnel! So the Carpal Tunnel was relieved/fixed, but the TOS problems went undiagnosed for years after the fact.

As for "horrific" surgery - you said it was a PA (physician's assistant) who told you this, right?? Please, do yourself a favor and erase that phrase from your memory. That's a very unprofessional thing to tell someone! Unless that person has HAD the surgery themselves, they have no business scaring you like that. Try to take a deep breath and realize that most surgeries are bad.. I mean c'mon, people, they cut our bodies open and mess with our inner workings while removing body parts or foreign objects then stitch us back up with a needle like a torn pillow!!! LOL! Just take a deep breath and good luck!

I disagree with the "horrific surgery" comment here. It really is a very violent, nasty surgery. You can actually watch it on youtube if you're brave. I've had multiple surgeries. Usually, they're more of an art form, delicately done with a pretty good idea where things are supposed to go and how to make them go there. With TO decompression surgery, often there is no way of knowing what is causing the problem until you get in there. They remove a rib, take out corded muscle, clip away scar tissue or anything else that looks at them funny. Trust me, this is surgery of last resort because there are so many unknowns- there is a pretty significant chance of getting worse or having no change post op.
This isn't to scar you out of surgery that you may need, it's really to tell you that a doctor who will tell you that this is a nasty surgery is a doctor who you can trust. I saw two surgeons who told me this was routine and a piece of cake. I ran from them like the plague. My trusted PCP and the surgeon who did my surgery told me that this would be a doozy... I stick with them. I value honesty.

Hi Lisa, I have been on a 10 yr journey to get diagnosed ( same as you I have 2 extra c7 ribs). I finally saw a vascular surgeon last month, who was like "I have an opening in my schedule next week. Let's take em out" needless to say I have been cautious about this approach. Add to this I am a professional classical singer, and am not willing to have that whole area messed around. I would no longer be able to fill my lungs due to the scalenes being removed and there is a risk of damage to e phrenic nerve and diaphragm. This is fine for Jo Blo on the streets, and may be right for most people, but I just can't take the risk with my career. Mind you, the pain for me is manageable. If you find the right PT I think you can get some relief. Also the people on this site are sooooooo helpful. There are so many tips. Heat packs, modifying all your daily activities can lesson the impact. It still hurts, but I am lucky that I have always looked after my posture for the singing. At this point the pain only gets really bad every month or so and only if I do too much and don't get enough sleep etc. So keep in touch, don't be disheartened and remember, there are more of us out there than you realise.
Take care,
Ans

Funny, my vascular surgeon said it was a "fun" surgery. Ok, not funny. And she seemed genuinely disappointed because I was moving and that someone else would possibly get to remove my ribs.