Neural thoracic outlet...anyone?

Turns out it wasn't the stretching :( Numbness came back...I still can't tell if this is all just random, or if anything I am doing is actually making a difference. Gotta keep trying I guess.

I got a bit of numbness and pain relief last night sleeping on my back with some rolled up blankets under my arms. It's not the most comfortable way to sleep, but I will try anything at this stage! I have a new symptom this week, it feels like my skin is burned on my shoulder blade - where it's been numb. Such an odd feeling, the skin actually hurts, which is weird. I wonder if I burned it with too many heat packs, certainly possible because I can't actually feel anything there. Best be a bit more careful I think.

I get the white hands when I have them up too - mine gets way worse when I stretch my pec - it scared the hell out of me when it first happened, I compared it to the other hand and had a bit of a freak out - I figure it's because the blood vessels are impinged.

What did your doctor say Daesin?

Pin,
I wont get to see my Dr until at least Tuesday afternoon. They are closed Monday. Nurse promised she would call me with a time asap. This is the ortho, not the TOS specialist. Nurse was concerned about my arm going white so it should be quick. Its a 90 minute drive so afternoon would be the soonest i could do. I need someone to drive me.

I really hate being reliant on others. I have driven across the country just for kicks alone! Now I cant get dressed without pain. I try not to cry in front of the family. It just freaks them out.

Anyhow....The shoulder thing you have going on is similar to a spot I have on my elbow. It feels like I have road rash, but under the skin. The skin is perfect, no marks, not a blemish to find. I know this wont make sense but it is under the skin....such an odd sensation. I THINK its where a nerve is rubbing or being compressed. But it could be up river and just showing up there too.

I have numb spots on my shoulder...in the regimental badge area and a small spot about an inch lower, where the anterior deltoid is supposed to be attached at the greater tuberosity. I tend to rub on it but cant feel it. I have actually scratched my arm and not known until I start to rub it again and feel the tear. So it sounds possible that the heat pack burned you. The heat does feel so good though.

Today I was able to use my TENS. I hope that means I will be able to sleep a bit more than normal. I wish things were consistent.

Thanks for the video link. I will give it a shot. My new mantra...will try anything. I cant lay flat for long as my chest starts hurting. I get a strong pressure right under my collarbone and in the triangle of my neck. I can lay flat for a bit to stretch if I use half of a pool noodle running down my spine. I do use pillows under my arms and sleep 3/4 on my good side...bad arm propped up on a large couch cushion behind my body. Kinda like the pillow is spooning me...lol. That lasts an hour or so and then I sit up in the corner.

I had thought a couple of times that my arm looked discolored/funny but with so much else going on it wasn't a huge red flag or anything. Now I am noticing it happens quite a bit. As little as 15 seconds above my head and it turns that terrible white.

Do you ever feel pressure in your throat? I choke at times over nothing. I get a flash through my shoulder and neck and my throat just closes. If I am swallowing at the time I choke.

I am learning that this is a variable pain thing. Sometimes it really really hurts, other times it just hurts. I have learned that I pay for my movements, sometimes the bill comes hours later. It can be a delayed thing or sometimes its immediate and also bites me later. That makes figuring out what caused the flare so much harder. I know that anytime I wash dishes I will have a terrible night. Laundry gets me right away and later. driving is almost instant...its 3 miles into town and that's too far for me anymore.

I was able to call the ortho today. The white hand is a definite sign of TOS. It indicates compression on the vascular system. It does happen with other injuries but is pointing him even more towards TOS. I also asked about the road rash feeling in my elbow and he said that is nerve compression. Okay, what he said was my nerve was very angry. He still has no idea what to do for me but was going to speak with another dr about trying nerve meds. YES please, I will try that. His only suggestion was don't raise my arm above chest level to avoid the circulation loss. They are still trying to find a sleeping med that will work on zebras...even the really strong ones aren't working with my odd chemistry.

I did get really good news though. Dept of Labor has finally agreed to the consultation with a specialist in St Louis. March 25 will be interesting. They will run me through ortho, neuro, Psych, PT and pain management in a 48 hour period. Yikes!!! I have booked my room at the hotel. Sadly we are considering cancelling our vacation (2nd honeymoon). We would have to fly home on the 24th and then immediately drive 4 hours to St Louis.... that might be too much. We will just have to see what happens.

My phone, thankfully, has a speaker button. I cant hold the phone to my ear but can use the speaker function. Little things that we must adapt to. I still haven't figured out how to work my hair. I am considering cutting it again. I was sitting on it when this started. I have since cut it to mid back but am really considering a buzz cut.

The oldest boy folded laundry for me today. Such a darling. Driving is getting to be too much. Even the few miles into town. Add walking through the store and checking out groceries and I am literally wiped out. I used to go on 30 mile hikes with a full ruck sack. I could carry a 90lb bad of secrete without hesitation. Now I cringe looking at the door handle of my truck. I really feel useless. Thank God I still have my humor! When that goes I am in trouble.

Oh I never thought of cancelling the dr appt...the vacation might get nixed!

I will most certainly be worn out when I see the doc. We booked the hotel and got passports today. Its officially paid for...so we might as well go.
Should be quite a week.

Thanks, March feels like a lifetime away.

Something odd, I am about two weeks shy of a year now. This limitation and injury has now infected my dreams. The other day, for the first time my arm was messed up in a dream. Not sure if that means that I am accepting this more or what.

It was a real shame to wake up and find my dream had finally come true. I should have dreamed that I was a size 4 again.

Did you lay wrong? or maybe a hectic day? Sometimes just loading dishwasher is enough to make the numbness increase. I guess that's what they mean by flare ups. The last few days the weather has dropped and been very wet. I feel it everywhere.

I saw my gp today and showed her my "pallor" trick. Wow doc, such big eyes you have! She said I probably shouldn't do that anymore than necessary. She brought up a good question. If this has a vascular component should I be flying for vacation? She thinks I may have to do an ultrasound to see if there is a clot before I can go on vacation. I will call the specialist tomorrow and ask in general terms. They haven't seen me but they should know if this is an issue.

I hope you have a a restful night and no numbness. I know that is no fun to wake up with. I found that doing ROM exercises helps break out the numbness in the morning.

I was told by several folks who have had Vtos that they flew to see Drs all over the country. One lady was put into surgery the very next day. No one experienced ill effects short of being very uncomfortable. The nurse at john Hopkins said there was no problem. So i am glad to hear that.

I know the feeling about being able to predict what will bite me. each day brings a new set of boundaries. frustration is not a strong enough word.
Has the weather changed in your neck of the woods? there is a guy on YouTube who has been dealing with this for over 20 years. TinmanTos. He has some interesting videos. I am not sure but I think I recall him talking about the changes in pain levels and paying for activity hours afterwards.

Not having a source for info is so irritating. I am so glad that you have access to a doc who explains things to you. I just get the confused look and 'that's odd."

I hope tonight goes easy on you and you sleep well. Maybe tomorrow will bring less pain.

Sorry to hear about the flare. I know how frustrating it is not o have a culprit to blame and avoid. I often blame a dog barking in Iowa for things that happen without a reasonable antecedent.

I foolishly did laundry today. Why my better sense didn't overcome the desire for clean socks I just don't know. I must be a very slow learner. So tonight is a dark dark night. I am distracting myself with catching up on correspondence and stupid driver videos.

Thank you for the links. So the swallowing is part of the issue. "Aberrant right subclavian artery caused difficulty in swallowing" Will certainly being this up to the new Dr.
I found this tonight: http://tos-syndrome.com/newbackup/tossymptoms.htm
It also includes dysphagia (swallowing issues) and the headaches funny feeling in face.
I feel better to know its included but without relief, well its bittersweet.

Does your Dr seem to be concerned about the obvious loss of blood flow to your hands? Has she suggested a course of treatment? I have noticed my fingernails are now going purple...cyanotic looking during and after my stretches. I wouldn't have chosen that shade for nail polish personally. ;-)

I still cant find anything about the numb spots on my upperarm that don't blanch. Its obvious when I get out of the shower. My skin is lobster red except those 2 spots. I may get the hubby to take a picture. Its really odd. But so much is anymore.

FYI My email is listed in my profile.
Rest well. I hope you get some relief and pleasant dreams.

My hands don't go white regularly, just when I stretch them up overhead or stretch my pecs - they're going a lovely cadaver colour. It's pretty scary looking, isn't it. I'm not sure what the doctor will say, as last time I saw him (2 months ago) it was only going numb, I hadn't noticed the white yet. l But he did say at the time, you can get vascular involvment too, by the sounds of it, it's quite common to have vascular as well as nerves.

I'm seeing the doctor on Monday, so I'll see what he says then...

I looked for your email - it says it's "not available"?

I thought I had posted on here about having had the surgery to correct thoracic outlet syndrome. It was in 1981 or so and very successful.

Hey Daesin, just checking in after my doctor appointment.

I've been laying low for a few days, feeling a bit miserable. My symptoms have been a bit worse this week, as you know - it changes all the time depending on what you are doing. I guess I overdid it this week and last.

The doctor said to book in an appointment to see a surgeon, just in case it doesn't get better over the next few months - where I live it takes months to see them. I'm currently booked in for June. He said I definitely have a vascular component, which is common, but it's primarily nerves.

He said it's not dangerous or anything, the white hand thing - not like it was a primary vein or artery version, because it's intermittent and changes with activity, it's not blocked up completely.

He also mentioned that the mottling of the skin is part of the syndrome - I figure this is what you are experiencing with the non-blanching patches. He said I didn't have that though.

I noticed you are on the neurotalk TOS forum - I might move over to there, seeing as we are quite the minority with this pain condition here, I don't want to be annoying! :)

Edit: Ps. I found this little gem on vascular flow in normal people in various arm positions www.ncbi.nlm.nih.gov/pubmed/24909503

Turns out regular people can have interruptions in blood flow with their arms in unusual positions too. Made me feel marginally better. Also, I tried the 90degree arms 2 mins test with my husband - he said his hand starting to tingle and go numb, couldn't do the full 2 mins. Go figure!

Post Edited (Pininpain) : 2/11/2015 7:37:33 PM (GMT-7)