Scared.
 

I have been having issues for a little less than 6 months. I was having neck pain which i knew was from bad posture and excessive hours at the computer. It started to get worse by accompanying it with dizziness, vertigo, trapezius (idk how to spell that) muscle very stiff, tensions headaches etc. I didn't really have arm pain at all. Finally i went to the doctor and had an X-ray done, thinking they would tell me i have a herniated disc in my neck (to match the one in my lumbar.)
It showed on the X-ray that i have 2 cervical ribs (one on each side) and the doc thinks that i have TOS. She raised my arms and such, said the pulse goes away in certain positions, which would explain why i always wake up with my arms asleep (stomach sleeper.)
I'm only 20 and i suffer from extreme anxiety attacks. I'm worried that my TOS is arterial from the ribs (though I've lived 19 years with no problems) and that i could develop a clot. I've just been researching as much as i could and i don't know what to do. every weird tingle or twinge in my upper arm/neck area or when i get dizzy i freak out.
Anyone have any advice? Is this condition deadly? Would a clot be obvious? I'm afraid to go to sleep and have a stroke in the middle of the night or something.
Thanks to any answers or posts, i don't know where else to go.
-Rini

First of all, take a deep breath. Most people diagnosed with TOS have been seeing doctor after doctor for many years before getting a diagnosis and we're all alive and kicking. I had arterial, venous and neurogenic TOS symptoms for 5 years before finally having surgery and I never had a clot. Now, this does not mean that TOS isn't serious, but it is something that you have time to see a surgeon, get a second opinion, get a certain diagnosis and go forward with surgery if that is appropriate. Clots take time to form and you'd need one to have a stroke.

A clot is painful- very painful. If you had one, you'd be going to the hospital of your on volition before you had a stroke. A stroke is a possibility, but it's not at all common and many TOSers live with their TOS and live long lives.

I can relate with you. I have post partum anxiety and my anxiety mostly surrounds medical professionals because I've had so many bad experiences with them, yet, continue to have to go to them. Anyway, have hope knowing that with cervical ribs, symptoms being relatively new, being young, having relatively low pain levels and arterial TOS you have a great chance of having a full recovery and a normal post-op life. You'll read on here a lot of bad experiences, but that probably won't be your experience so don't let those stories frighten you.

Anyway, I wouldn't worry about a stroke in the middle of the night or little twinges and tingles. Just get yourself to see a TOS specialist- a real specialist, and see what they have to say. You've got plenty of time to wait for a consultation.

Thanks so much. I'm a lot calmer now. My head problems are pretty bad, the dizziness and headaches and neck/shoulder stiffness and pain start right when i get out of bed, which makes me think it's my muscles causing it. They aren't commonly stated as a symptom of TOS so i started to freak a bit.
Your reassurance on the clots is really helpful. Thank you. I will get a much better night sleep tonight.
I'm wondering if you know if it can be reversed without the removal of the ribs? If it's possibly just muscle and poor posture while having the ribs.
Again thanks for your reply and reassurance. Means a lot. :)

It is possible to reverse it without removal of the ribs but that is hardly ever recommended when you have vascular issues never mind a verified bony abnormality. It is highly unlikely that you will get better without surgery. I am someone who did not have a boney abnormality but because it was vascular it had to be done sooner rather than later.
As for the head symptoms, that is not unheard of. The myofacia is very interesting and can pass pain to strange places. That's what makes TOS so hard to diagnose. I've heard of people having those symptoms then them disappearing after surgery even though they weren't really thought to be part of the TOS. Personally, the left side of my face and scalp from the cheek up were numb but that has lifted since having my ribs removed.

Ah i see. Hopefully PT helps a little bit with the stiff neck muscles. My cheek tingles and i get tender spots on my outer eyebrow/temple area. Hoping when i get the ultrasound done it will tell me good news. Surgery is scary as well but if you risk veins/arteries, i guess its the way to go. Thanks again for your help. Are their any positions that you slept in that helped?

Unfortunately, the only "good" sleeping position keeps your shoulders from collapsing in and your arms from being "up" or under your head. I can't sleep like that so I'm screwed, but hopefully you're a back sleeper? Try sleeping on your back with pillows supporting both your arms if you need it. Try to sleep with your palms up if possible.

I've been a stomach sleep all my life which probably contributed to this problem as well as my back problem. I've been trying to sleep on my back (makes my heart feel funny, possible mitral valve prolapse, not dangerous just feels like its regurgitating lol) but a pillow under each arm seems like it should help. Palms up, got it. I bought a memory foam pillow and it's just not comfortable. I should ask my PT if he has some pillow suggestions as well. Feather pillows seem nice.
After your surgery, are you a lot better? Or do you still have a few issues?

I have a lot of issues, however, don't let that scare you. I have other issues as well. My hypermobility already has gifted me with 2 shoulder stabilization surgeries and likely contributed to the TOS. I did have a lot better sensation and no more pain in my arms which is great. I can use my hands again! That alone has made surgery worth it to me. I'm not quite 8 weeks post op so there is a lot of recovery time left. I also have a 16 month old daughter. I didn't want to risk having a stroke or pulmonary embolism or any of those other nasty worst-case scenarios when I have a young baby. It was worth it to try so I could be a more active parent than to watch myself gradually regress.

Clots
 

Well, I can't comment on other people's clots or lack thereof. I can only tell you about the one clot I had that led to my diagnosis (venous TOS). Mine was not painful so my only warning was that one of my hands turned bright red. It still gets a little red even though my clot resolved, but never as red as when I had the clot. I had no clue what was wrong with me, and I felt silly going to the ER but sure am glad I went. My two cents: It takes a while getting use to monitoring your body as needed without obsessing. I am still learning how to find the balance after many months. Be kind and gentle with yourself, and just know that our bodies have an amazing capacity to heal. The most dangerous time with TOS is the time period prior to diagnosis, in my opinion. At least once we're diagnosed, we are clued in that something is wrong, and can take positive actions. Yes clots can be dangerous but so can driving a car, riding a skateboard and cutting steak with a knife. That said, I've gone to doctors for my share of "false alarms" and thankfully now feeling less embarrassed about it. My friends who have major medical conditions understand it's important to monitor my condition, and yet also important to live without worry 24/7. So very tough to do, but it's getting better for me with practice and I look forward to the day when I will be getting appropriate treatment and won't have to be quite so careful.

Wow, well i'm glad they found it. That seems to be a scary scary thing. I don't have much arm problems, but i have poor circulation overall. I've had cold hands and feet since i was 15 so it's so hard to tell if something is wrong. I had hardly any pain when i sleep (if i'm in a good position) from resting my head. Once I get up in the morning i get a throbbing headache. I'm anxious not knowing what's going on in there. Once the ultrasound is done i guess i can relax, haha. Have you had surgery on it? What are your plans to get better? Hope it all goes wonderfly for you, and I'm here for advice as well, though it may be minimal. Thank you for your input :hug:

Try not to worry. I am not diagnosed with tos but I have read the same things you have and yes it's scary. I have two blood clotting disorders. I have put the whole clot thing in the back of my head. The best thing you can do you have already done and that is read. You are now informed which is more than most people. Now you know what to look for :)

Went to PT today. Lady was super sweet to me, she did all the tests the doctor did but she understood that being in certain positions makes me anxious. I've had all the pain on the left but she said the left pulse doesn't drop as much as the right pulse does. And she assured me i still have a pulse in that position, i'm not dead lol but it is restricted so they're almost positive it's arterial.

Self pay for a vascular ultrasound (no insurance in this state) is $2000. So i can't do that. Scheduling it for when i fly home, but she said we can see if PT helps for 4 weeks, 3x a week to at least strengthen everything and open the area up as best we can.

All i can do is hope! She said my range of motion is great. No numbness and tingling in the arms is a good sign and i can keep positions without getting dizzy for now. Gotta work on my ergonomics and posture!

Thanks again for all the support ladies and gents :)

Glad to hear you're getting some where. So hard to be patient when you're in pain. My dads friend is a vascular surgeon in fl he told my dad since I have the extra ribs and if my pulse comes and goes I will need surgery and pt won't help. If it is just nerves pt should help a lot and help to avoid surgery. I will find out the 12th if it involves my artery. I really don't want two ribs removed. I sware since I turned thirty my body tries to get rid of all unnecessary parts......lol! Hahaha I still have my appendix! The good news they give neck massages at pt!

Thanks
 

Thanks for the kind wishes. I'm just waiting now for my insurance to approve a surgery and hoping they don't try to delay or fight it. I have no experience prior with this company so I don't know what they're likely to do. I had physical therapy also although from what I understand when you have a clot from venous TOS (aka Paget Schroetter) surgery is the normal recommendation. Your throbbing headache symptom is not one I have but some people I know with neuro TOS do get headaches. And I know people say ultrasound isn't perfect but in my case it was the first test that showed my clot. Then the venogram confirmed it. As venogram is invasive the drs don't like to do those unless they are pretty certain of a clot. So in my opinion, ultrasound is awesome! It's what they use me on for followup checkup. My only suggestion there is be sure they test your arm in different positions. Actually having the clot wasn't that scary; I had great treatment in the hospital and almost painless except that the arms get sore and prickly eventually from all the blood draws and IVs. It was actually scarier to read my medical records after it was over than to experience first-hand!

Do you think they're taking your first rib out too? Or just the cervical ribs?
Yeah i'm thinking in the end they'll have to be taken out, but logically i keep saying to myself "well i had no pulse issues for so long, if i fix my posture it should go back to normal right?" Haha i'm stubborn i suppose. Currently i'm just 100% scared of not waking up from the anesthesia. :/ That's why i'm worried about surgery or else i'd hop right on board. I hope all goes well for you! We can share our experiences, whoever gets the surgery first, let the other know how it went. And yes, PT MASSAGES. Half the pain is being so stiff, should feel awesome.

I had zero luck sleeping on my back comfortably. I had to learn how to sleep on my side with my arms at my sides. Stomach sleeping with my arms raised definitely aggravated my symptoms.

Pregnancy pillows can help you sleep on your side properly. My wife has one called a "snoogie".