am I a dum-dum or a trailblazer?

well here is a bummer. My insurance will not pay for prolotherapy

Ironically when I had platelet rich plasma therapy on my foot, my old insurance paid 100% because the treatment has been spectacularly effective and economical.

I do have a flex spending account, and they will pay for part of the office visit portion. Urgh!

My arm looks decent...still compressing a lot.

Cheers to all. 

Hi, I posted a picture of silverwave on the compression bra cost thread.

So...I am done with injections, at least until June. 

My schedule and my docs schedule get really tricky, and she feels we are close to done.

There is still a little bit of the "over the elbow" flag we would like to get, but she is hopeful that perhaps today's injections did the trick.

So my preliminary conclusions...and questions

Did this work?

Sort of.

My upper arm is 1CM smaller, and my MD said I shrunk even when my weight went up.

The bad news is that this is no magic bullet for LE.

I still have to wear my compression as much as I did before. I am motivated to wear it, since I am seeing results, but I can feel the swell when I don't wear the garments.

The other question is, did this treat the LE or another problem?

I know I had a host of other upper arm issues. Pain spasms, odd fluid pooling, range of motion.

I think it is possible that the treatment addressed nerve/scar tissue problems which were creating swelling in the LE environment as opposed to really "fixing" the LE.

This may be the reason the benefit is much more clear on my arm than in my breast.

My trademark undiagnosed arm bubbles are a lot better, but not gone 100 percent. 75-80% better though.

Oh and my scars are much less fibrotic, though one spot of fibrosis does seem to grow back like a dandelion. Again 75%-80% is a decent estimate.

For my breast...hmmmmm....swelling isn't worse, maybe 20%-40% better.

I have no idea if this will be any sort of treatment for anyone else for LE.

It was a BIG gamble having a LOT of injections on an LE arm and breast.

It could have turned ugly if I came down or come down with an infection.

I would say if you have a side where there are no nodes out, it might be worth a shot for scar issues. Perhaps also range of motion or pain.

So I hopefully won't have much new to report for a while.

Cookies for all!

Here is another thought.

A lot of people can get a 1cm improvement with wrapping. Unfortunately wrapping never really worked since most of the swelling is so high. It just seemed to push things in the wrong direction.

While this is obvioulsy easier than wrapping, there is bruising and injection site swelling.

The bruising on me sticks around for a while. Typically the injection swelling goes away in 36-48 hours. 

ok...after a lot of ackward wiggling I got a slice of wavy foam into my sleeve over my elbow. Maybe it will help?

So I wore the little wiggle foam over the elbow for 24 hours. Some slight improvement.

thanks camille....((camille)) 

Mine is so atypical and I had so much trouble getting a dx, I had to put in a lot of effort from the start.

I kept getting dxed with infections, prominent doctors said it was not le because it is so high on my arm.

It's also hard because I have a very public job,and image is a big part of it, and I really struggle with wearing the garments and all the questions. 

I think the wiggly elbow foam is helping. The corner shelf above the is a little rounded.

Hello! I had my next and maybe last set of injections today.

I also got discharged from Radiation Oncology.

I also had a big proceedure on my foot.

Feeling kind of tired, but wanted to update/

Hi....my latest update.

So the good news....I feel like my upper arm has stayed under control better this summer, and even the stubborn breast has continued to slowly improve. Knock wood.

As for protocol, I have a lot less injections, a lot less frequently. Since I see the same doctor for my foot, we still have been doing a few, but more like every 4-6 weeks, and really in a much more limited area.

So I still feel like this was successful, even if it was not a cure.

(Even my LE, who I had not seen in a while was impressed my LE arm now looks smaller than my other dominant arm.)

Here is the hard question, do we treat the hand, where my LE now seems to be showing up with injections?

The negatives....the injections are way more painful in the hand, and the injection site swelling is worse.

The stakes are higher here.

If I have a bad reaction or swelling in the hand it's a bigger deal than the breast or even the upper arm.

Dr. Francis was totally fine with doing it on the breast and 50/50 on the arm.

We did one injection in one finger as a test, it swelled but went down ok.

So I am back where I started. It's a unproven, painful, time consuming, risky treatment that just happens to have seemed to have worked for me. 

I think I am going to wait until summer is done, maybe the cool weather will help my hand. If not I may consider going ahead.

???????