Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

\”Pain is Only What You Allow It to Be\”~Clare: Prolotherapy Through my Eyes

Written by Katie. Posted in Ehlers-Danlos Appointments, Prolotherapy

Yesterday marked one year of prolotherapy treatments.  10 treatments.  Or 10 “tune-ups,” as I like to say. That is what prolo is for me; regular treatments that help keep me teaching, exercising, functioning, living…

I don’t have any major stories to share this time around.  No stories about eyes not opening, or Fat Tire Beer, or even the Life is Good Store.  Brad and I left early in the morning to get to my 11:00 appointment.   We knew we had to leave earlier than normal because we were pretty sure we were going to run into weather.

And that we did.  The roads were horrible going down.  A few clues that tipped me off were a) there were multiple vehicles in ditches, b) Brad’s rare death grip on the steering wheel, and c) the fact that Brad was going 55 for a while on the highway.  That, my friends, is unheard of.

All in all, it was a pretty stressful drive down but we made it in time.  We made a quick stop at Subway, and got gas before heading to the office.  I don’t know how, but we still managed to make it there early.

If you have been following all along, you know the drill as well as me by now: Vitals, weight, updating meds, talking about my progress, mapping out my pain/injection spots, and then the injections.  I dreaded getting on the scale since I have been eating like it’s my job over break, but when I stepped on, I weighed 5 pounds less than last time.  How in the world did that happen?

My, how things change.  A couple of years ago, I would have been ecstatic about this.  But instead, I immediately found myself worrying, wondering if my weight loss had to do with POTS.  I made a mental note to keep my eye on things.  Last time I began to lose weight, my body crashed, and it crashed hard.

Anyways, from examining me, Dr. Cantieri was really pleased with my progress with my strength in my scaps and my glutes.  He also thought that me seeing a cranio-sacral therapist could really benefit me.  For the shots, Dr. Cantieri ended up focusing more on my left side this visit, since that is the side that gives me the most trouble.  My injections started  at the top of my neck (on both sides) and ending at my last rib.  I had a few injections in the front of my rib cage as well.

After about an hour, I was finished, scheduled to come back in 6 weeks, and I was laying down in the back of the car, on the road.  Thankfully, I was able to sleep, and Brad was able to drive much easier since the roads were just wet by the time we left.  I took it easy the rest of the night; laying on my heating pad, watching episodes of Modern Family, and blogging.  Yes, I got the prolo pukes but that just goes with the territory for me.  Today, I have been up and around much more, feeling thankful to have this treatment as an option.

I have been receiving quite a few emails to my Life as a Zebra email account lately.  Many of them have asked me questions about prolotherapy, and if I think it is effective.  I decided to use the rest of this post to put my thoughts out there for anyone interested.  I realized that I have been blogging more about my trips, and not about how I feel about prolo itself.  When I was deciding about whether or not to try it, I would have loved to have someone’s perspective who had tried it, so hopefully this will be of help to someone out there in blog land.

But first, a few pictures for the sake of documenting:


So do I think prolotherapy has been effective?

For my short answer, I would say that yes, I have found it to be worthwhile and effective.

With that being said, it has by no means been a cure-all, but it has helped me get out of my neck collar, providing me with better stability, and saving me from a C1-C2 fusion (for now).  Like I said before, it feels like a tune up.  I get it done, get on with my life, until I need it done again.  Many people only need a few treatments, but it is not uncommon to need more with a connective tissue disease.

To be honest, it does hurt and it is expensive.  There have been times when I have left the office with over 80 injections.  I do not know one insurance company that covers it because it is viewed as experimental.  That’s not to say that there isn’t one…I just have not heard of one.  I spend $325-$450 a visit.  For me, the pros have outweighed the cons, and the money spent has been worth it.

I do have to say, and my prolo doctor would agree wholeheartedly, that prolo is not as effective without a good strengthening program in place.  Better pain management and stability for me has come from a combination of monthly prolo treatments along with 3 days a week of PT/Home rehab.  They go together for me like PB and J.

When I decided to try it, my biggest reason was that I wanted to try everything else before having any major surgeries.  So when I think of it in that perspective, it has been successful and worth it, since I have been able to dodge these major surgeries.

The reason I drive from Michigan to Indiana for treatment at Corrective Care is because I wanted a doctor with tons of experience.  Sure, there are prolotherapy doctors around where I live, but when I researched them, none had been doing prolotherapy for nearly as long as Dr. Cantieri.  I was told in the beginning of my search that finding an experienced prolotherapy doctor is crucial.  Dr. Cantieri has written a book about “The Principles of Prolotherapy” that is used all over the world.  He also teaches about prolotherapy nationally and internationally.

For my health care, it is important to me to find the best doctors that I can find.  This, I’m sure comes from many of my past experiences including my year-long doctor tour when I saw over 20 doctors who had no clue, and thought I was just depressed, as well as the botched surgery I had at 17, that required multiple reconstructions.  Everyone has priorities when it comes to their health.  One of mine is seeking out the experts.

One question I get is how can you travel so much and afford to spend so much money?

I look at it this way.  I have a great support system who is willing to help me travel.  I have two chronic illnesses that are here to stay.  This is the body I have for life.  I must treat it with all of the love and resources that I can find.  I have too much left to do in my life.  Although it is difficult, I often have to make sacrifices so that I can choose to invest money into my health.

So, there you have it.  Sure, my perspective could change a few months from now, but for the moment, prolotherapy is something that I feel is effective, worthwhile, and is something that is pretty non-invasive.

I’m sure I left many things out, so if anyone has any more questions, please email me at katie@lifeasazebra.com, or leave a question as a comment and I will try my best to help!

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