Thursday, April 19, 2012

Initial Consult

I saw my new prolotherapy doc yesterday!

Apparently I was misinformed, however, as I am his first EDS patient for prolotherapy.

He is excited to have a guinea pig, almost as much as I am to be one!

We went over our game plan yesterday, which is to start with my left shoulder, as it has persistently been my worst joint for over half my life, and if I even had 10% of "normal" functionality in it I'd be happy... Also, because it would be the easiest joint to check for improvement.

The plan is to start with the least aggressive solution, and about 15 injections into my shoulder. If that doesn't work, there is a stronger solution ,and if that doesn't work there is an even stronger solution, with alcohol in it that is the most aggressive one, which would only be used as a last resort. There's also a possibility of PRP (platelet rich plasma) being injected to aid in recovery.

I told him about the EDS related prolotherapy research I've done, and about the "whole body prolotherapy" which is in use in the U.S. and he seems to think that may be excessive... But he still needs to send me to a Manual Therapist for an assessment of my joints, and a recommendation as to which joints to work on once we figure out which solution works on me.

I had one little issue with him... Even though we are on the same page as to expectations - which is very abnormal... I usually seem to be in a different book - he wouldn't let me finish my sentences. I tried to explain to him my previous reactions to local anaesthetic - as in it BURNS, like HOLYMOTHEROFGOD WHO POURED ACID ON ME kind of burns... and I got about half way through an explanation, and he cut me off, and wouldn't let me finish. I'll try again to explain it to him. And I'll use fewer words, maybe something to the effect of "It's not that local anaesthetics DON'T WORK, it's that they DO THE OPPOSITE, as in THEY CAUSE ME PAIN." Maybe that would get his attention.

Oh well. Back to the waiting game... My appointment for the first round of prolotherapy is on July 5th.

Is anybody else as excited or anxious about all these needles as I am?


Anonymous said...

Hey! I just found your blog searching for one on Ehlers-Danlos. I may have EDS based on my clinical and family history. I have had five rounds of prolo on my shoulders, spine, hips and SI joint. Its hard to tell if they have helped or not. I was told that it takes about five rounds to see improvement because the body is slow in laying down new tissue. I have seen some small improvements in my functionality. I'm also seeing a manual physical therapist (bless his heart for dealing with me). I have seen others with EDS comment that if we make faulty collagen, won't prolo just cause us to make more faulty collagen? I don't know... Best of luck to you! They do hurt and will make you super sore for a few days, but each one got a little easier to bear. I hope that means the tissue is getting stronger. typer

BubbleGirl said...

I was told by my doc that if don't notice improvement after 2 treatments, we would have to switch the solution to one that's a bit more aggressive.

And the prolotherapy does create more of the same faulty collagen, but having 2 weak elastic bands is stronger than having one, right? Also, collagen shrinks after it is formed, so the new collagen will pull the tendons tighter, making your joints less loose.

I'm not looking forward to the additional pain involved, but I'm also not looking forward to spending my life in a wheelchair, which is where I'll be by 30 without some form of treatment. I'd also like to stop spilling my coffee when I dislocate my shoulder.

I wish you all the best in your treatment, and hopefully you'll start noticing bigger improvements!