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.

Great to hear the botox has been working. I remember reading somewhere that after a few injections, muscles stop responding to it. No idea if this is true though.

I would guess that such a response would depend on a combination of the dosage amount and the interval. But in any case, I'm sure @Eight's doctor who administers the botox can say more definitively.

I will continue to sing the praises of Dr. Donahue, as he truly gave me my life back. In 2011-2012, I had two rounds of Botox at MGH, followed by two rib resections and scalenectomies. Now more than two years later, the advantages to surgery for me have made a world a difference. I can't say enough great things about Dr. D, he is absolutely wonderful.

Yes. I remember that as well. I found that post as a deterrent to botox last fall. However, botox should weaken the muscle over time. The body shouldn't build an immunity to it, but even if it did, the muscle should still weaken from lack of use.

When I lean over like I am going to touch my toes, but grab my calves and pull my torso toward my legs, my spine pops or cracks like when a chiropractor adjusts me. It feels sooo good.

Tonight I sat outside and was able to put my hands behind my head and just relax like that for about five minutes before I felt some draining and tiredness on my hands.

One day I want to lay in the grass with my hands behind my head for an hour and watch the clouds.

Also, I started getting these funny sensations on my arms today, it tickled like a spider crawling on me or something. Today I figured out what it was. Hair from my head that has fallen out and landed on my arm. I kept looking for a bug or something on me. Haha, then I found hairs on me a couple of times.

I think it would be if more insurance would cover it. More docs seem to be doing it than were a few years ago.

Hello, my friends! So, I am back in Boston, and thought I would give an update. It is 6 1/2 weeks since I had the anterior scalenes Botoxed. Two days ago I got the middle scalenes Botoxed. It can take up to four weeks for the full result. No such dramatic results as the first go round, but I did wake up early and feeling well rested and energetic yesterday. Haven't woke up feeling like that in at least a few years. Spent the day site seeing And feeling good. More tired today and no significant change.

Dr. Donahue wants me to do botox and Pt to see if that will help, but if it doesn't I will need surgery.

First botox shot seemed to have stopped working last night. Called and was told it isn't supposed to just stop like that, may just be a flare. Anyway, I'm ready to have surgery....

Dr. Donahue is looking through my chart again and then will decide if he will do my surgery. I also got a copy of my nerve conduction tests from when I was a baby because I had a brachial plexus injury in the right side from being born. I got all better, except I hold pencils kinda funny, that is the only remaining possible sign. I did just read it today and it said that my c5 and c6 nerve roots were damaged outside of the spine, I don't really know if this matters or not. Anyway, I've never noticed any problems, lol, not that I would know what I was supposed to feel like if that is the way I had always felt....This birth injury is part of the reason that Dr. Sanders decided to cancel the surgeries I had scheduled with them last February, which means there is a tendency to cherry pick since I am a "difficult" case.

For one whole week when I had both the anterior and median scalenes Botoxed I felt really good. I had energy, like someone who is normal must feel like. It was nice. :). If Dr. Donahue won't do my surgery, he is willing to continue my botox indefinitely it seems, so becoming a homeless person in Boston is still an option. :)

On a happy note, my boyfriend has agreed to come with me for my surgeries and help pay part of the expenses!!! I was pretty sure he would, but just for shits and giggles I sent a group text message earlier today to my parents, brother, and sister to see if any of them would come with me for my first surgery....none of them responded at all.

Nurse Julie said she would call a social worker if I didn't have anyone to come with me so than arrangements could be made. It's a relief to know that's an option if needed.