Bilateral anterior scalenes.

I got my pictures taken in Dr. Donahue's CAT scan. I will talk with them next week to find out the results and report on the botox.

I have since gone back and forth on the fingertip feeling since this weekend. It stayed it place from Tuesday to Friday constantly. My feet tend to fall asleep more now that started Tuesday night, it happens about every other day but it is not as painful as when the hands do at night. Yesterday the left side of my face fell asleep. Weird! My left side is worse. I have had quite a bit of nerve pain. Yesterday my left had turned a little bit bluish (new symptom). I laid down with my heating pads (yes plural) for a bit. Then my left hand and arm got warm, the blue went away, then the left hand looked maybe a little swollen, and got very warm for the rest of the evening. I could feel strange sensations on my whole left side all evening. It was good though, like things were trying to return to normal.

Today the whole left side is cold, and achy. Fingertips feeling is still there in some of the fingers, but not all. The achy part feels like nerve pain. It is still morning though. Everything is always worse in the morning.

My work is sitting at a desk typing and aggravates my symptoms significantly. Needless to say, my attendance has been lacking.

My goal is to be. "Fixed" one year from now. After ten years of this crap, I am finally open to surgery - everything got really bad last fall.

Anyway, Dr. Donahue is awesome. I am glad I went to see him. I wish I had years ago.

Thanks for the info.

Back when my hand would turn blue I could fix it by using the opposite hand to reach across and shove my rib down while tilting my head towards the rib (to create slack in the scalenes). In case that helps.

I use a tennis ball to shove my rib down. I lay on it and move my arm up and down slowly. I saw it off a link someone posted.

So now both of my feet have a strange crawling sensation, from the inside! It is strange.

That's fantastic that botox is working for you!

Well, the fingertip sensation is stayin intact. I was getting to the point where I was feeling almost okay, but then they had me go off some of my meds, specifically neurotin, skelaxin, Flexeril, and lidocaine patches to see how I did without them. I've got some pretty severe nerve pain, especially on the left side. Still get the strange crawling sensation like there are ants crawling out from inside my feet sometimes, again more in the left, and nerve pain in the left leg, especially lower left leg. Hands still fall asleep at night - this had stopped for the first week following the botox shots.

I will talk with the nurse later this week.

Overall, I am so far hoping that surgery is an option for me. At regeneration of one inch per month, hopefully the nerves would regroup and the pain be gone in a couple of years??? I hope.

Oh, and grip strength has significantly improved in left side, not so much the right side. I have a metal plate and eight screws in my right humerus which was from a car accident two years prior to the TOS car accident. Also, my right arm didn't work at birth due to either Erbs Palsy or more likely Klumpke's Palsy, so that may also play a role in the weak grip, idk, I hold pencils funny. Also, I bend my thumb when pinching something between my thumb and pointer finger, always have. Kudos to Coop for the thread on Wartenburg Syndrome, i now have a name that explains why I hold my pencil funny.

Update: I will be going back to Boston to also get the median scalene muscles Botoxed. I only had the anterior done before. The reason being that The median are really hard to get to with the needle, and it does not provide as much relief as the anterior scalenes do when Botoxed. I am going to get them done to help with lingering pain toward the outside of the shoulders.

In addition to the botox I will be doing lots of PT that will primarily be the myofacial release to stretch and move scar tissue to a more comfortable place. Now that the botox has relaxed the anterior scalenes it feels a bit like the scar tissue along my sternum, clavicle, in center part of the lower ribs is pulling a bit.

My hands fall asleep at night, but they didn't the first week after the botox. Hopefully these additional shots will help with this.

I'm guessing that I will have to go back for more botox three months following these new shots for more botox. After that I may be able to lengthen the time between shots. Eventually, I may not need them Any more if the muscles atrophy enough. Or need them less frequently, like every 8 months or every year or so.

I am trying to talk a doctor here in Nebraska to get in on this botox as a treatment option, that way I don't have to keep flying to Boston. However, a quick cost benefit analysis tells me that flying to Boston is still less costly than not. I think I have spent nearly $10,000 on massages alone over the past ten years, and that was just to function. Never mind medicines, doctor appointments OTC creams, lotions, tests, er visits, loss of wages from missing work, loss of earning potential from not doing certain types of work ie. waitressing, varies devices to support my shoulders, keep my hands down at night, electric massaging devices, heating pads, braces, poor health from not exercising because I felt bad, etc., etc., etc.....you guys know.

I'm actually kinda wondering why botox along with intense pt isn't the first treatment plan for this stuff.

Why would your feet have anything to do with thoracic outlet syndrome?

It's odd for sure. THere's a few theories out there.

One is that the central nervous system gets stirred up and that it interprets pain more readily from sensations that will not normally produce pain. Look up "central sensitization"

Another could be that your blood flow is being restricted.

My massage therapist thinks its fascia. In my case, I agree with her. There are these little casings that slide over our muscles. THey group them up. For example, a single muscle in my calf might have a fascia, but all the mmuscles in that group would also be encased in another fascia. She says there's a long fascia that runs from the base of the skull down the back, leg, and into the heel. She often finds patients with tightness in the neck will also get heel pain. I stretch out my calves and back and everything running along the line of the fascia and it reduces my heel pain.

For me personally, the heel/sole of foot pain started at the same time as my TOS symptoms, and when my TOS symptoms flare, the heel pain gets worse.

Don't think of TOS as a single part in your body. TOS has more to do with vast structures that flow throughout your entire body. This is part of the reason why it is hard to diagnose. [You go to a hand doctor for hand numbness and they are stumped.]

When my physical therapist did manual work to lower my rib, my feet would kick out instinctively. I believe it is because the giant nervous system was gaining slack. My feet probably loaned everything it could to my shoulder. Your entire body gets 'tight' because of stress in one area pulling everything towards it.