Monday afternoon Brad and I headed to Mishawaka, IN for my three doctors appointments that were scheduled for Tuesday. We made a last minute decision to go Monday for a few reasons…The weather was supposed to be nasty Tuesday morning…I knew that three appointments and a 2 1/2 hour drive home would already kick my behind…And we got a room at the Comfort Inn for 50 bucks.
We pretended we were there only for pleasure and enjoyed a nice dinner Monday night at Papa Vino’s (first time there) and quick trip to Meijers since I forgot socks, which was followed by watching The Bachelor (Brad was oh so thrilled 🙂
Tuesday morning we headed to my first appointment with Dr. Cantieri. Dr. Cantieri is an osteopathic doctor who specializes in complex pain problems. I had emailed him a while back about prolotherapy and Ehlers Danlos, and he emailed back that he had treated about 8 people with EDS and prolotherapy had helped about half of them.
After hearing in Cinci that I probably would need a C1-C2 fusion to help with my neck instability, I decided I wanted to explore the other more conservative options FIRST before surgery, which included prolotherapy. At my appointment, Dr. Cantieri spent quite some time answering my many questions, and listening to my concerns and problem areas. Then he examined me and decided that it would be best to try the prolo from my C2 in my neck down to my thoracic (mid/upper back). He explained that in a normal person, it would be black and white if the treatments helped within 2 treatments, but in an EDS patient, I would need 4 treatments to really determine if it is helping.
I explained that with procedures, I often become really nervous, and honestly struggle with some trust issues (I’m sure because of my history) and he reassured me he had done thousands of injections. I had to remember that this is why we had traveled. Dr. Cantieri is one of the most experienced prolo docs in the country.
I agreed that I really wanted to try it. He said prolo works best with a strong physical therapy program set in place so I have that going for me…Dr. Cantieri explained that each treatment would be 2 to 3 weeks apart so I will be seeing a lot of Mishawaka in the next couple months.
Dr. Cantieri had ordered blood work before I came to look at my growth hormone factor and my testosterone levels. My growth hormone factor was awesome but my testosterone levels were really low. Because testosterone helps with the healing process that is crucial to prolotherapy’s success, he is putting me on a testosterone cream, that I am to rub on a hairless part of my body each day to get my testosterone levels up. He said, (direct quote), “You are going to have to watch if you start to get fuzzy…” Oh geez, hopefully I do not sprout a mustache in the meantime…That’s the last thing I need 😉
The only kicker is that insurance does not cover prolo since it is still deemed experimental….but the way I look at it is if it helps, it will be worth every penny and if I can dodge a major surgery that involves the brainstem, again it will definitely be worth the hefty price tag.
So February 1st, I will be traveling back to Mishawaka for my first treatment. Dr. Cantieri said it will take a about an hour to do the prolo, and he will send me home with some pain meds since I will definitely be in pain. No pain, no gain, right?
This is the brochure I was given to explain the process of prolo and how it works.
Honestly, I have a lot of hope that prolo will help, but I still need to realistic that with EDS patients, because there is already an underlying connective tissue disorder, it may not be as effective. But I’m gonna pray hard that I am a person that will benefit and be able to achieve more stability with the prolo treatments and physical therapy working together! Time will tell!
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