Prolotherapy: The road to my first treatment

     Last fall I was diagnosed with EDS.  It's something I've had my entire life evidently, since it's a hereditary condition, but I've only known about it for a little while.  With EDS, Hypermobile Ehler's Danlos Syndromes (hEDS) in my case, the collagen proteins in your body don't work quite right.  This means your joints tend to be more lax, or hypermobile, but it can also affect the other collagen-related tissues in your body, like your GI tract and your skin.  When it comes to your joints, there's no exercise that can tighten connective tissue that has stretched.  Surgery isn't a viable option either.  So what's left?  If I chose to ignore it, then likely my injuries would continue to snowball happening with more and more regularity as different parts of my body stopped supporting the others that were depending on them.  For example, if my ankles are very loose (which they are) then that can lead to a higher likely hood of injury in my knees or hips, or other things higher up.  

    After my diagnosis, my doctor and I began to learn together more and more about EDS.  In her research, a particular specialist in The City came up as being my best option for treatment.  This was not an immediate answer, however, as when I went onto the clinic's website to make an appointment I was greeted with the information that this doctor was not accepting new clients.  It went on to say that if I thought I was the exception I could fill out a form and then the office would get back to me within two weeks letting me know that he could not see me.  Undeterred, I filled out the form.  I also asked a few key people in my life to be praying for me that if this was the route I was supposed to take that the doctor would agree to meet with me.  After about two weeks I received a text message asking me to have my doctor send over my records.  I did and she took care of it right away.  I didn't hear anything again for over a month so I checked back and they asked me to have my doctor call the specialist. She did and the next day I received an offer for an appointment two months later with his Physician's Assistant. On the appointed day we left the house at 6am for the trek into the city in time for my 8am appointment.  I asked and if I wanted anything later in the day I'd have to wait at least 4 more weeks!  

    The appointment with the PA went very well.  She also has EDS so it was funny to go through the Beighton test with her as my husband looked on and wondered what was wrong with him that he couldn't do any of the things we were doing!  She scored me as a 9/9 meaning that I am very hypermobile.  Then we discussed treatement options.  The challenge I am facing is that my connective tissue is not holding my joints in place properly causing subluxations, often multiple in a day, that ultimately lead to migraines as well.  There are two treatments used for strengthening connective tissues:  Platelet-rich Plasma (PRP) and Prolotherapy.  The PA said that PRP would not be likely to help me and that Prolotherapy would be a better option.  The only other option was spinal fusion surgery and that would lead to far more problems than I already have so I wasn't interested in that at all! We decided to pursue Prolotherapy and the PA wrote me a to-do list:

1. Make a follow-up appointment with the specialist

2. Get a thoracic MRI

3. Get a Spinal Stability Test

    I checked off #1 before leaving the office and made an appointment about six weeks later in his first opening.  That week I also knocked out #2 and since it was my seventh MRI in about a year I wasn't at all nervous about it.  #3 was what I was most afraid of.  I didn't think it was a big deal until I asked my Physical Therapist to perform it at my regular appointment later that week and she said it was outside of her abilities and I would have to see someone else.  She also explained that the test would involve moving all of the joints in my spine and measuring their degree of movement.  That didn't sound pleasant.  I called the specialists' office back and got a referral to the provider they usually use for the testing.  I hopped online and made an appointment with him for the week before upcoming specialist appointment.

    The day arrived and my husband and I travelled to The City for my Spinal Stability Test.  The provider that performed it does this on a regular basis, setting aside one day a week particularly for them.  He was extremely familiar with EDS and had an excellent grasp on how it presents in the body.  He began by checking my pelvis, assessing how it moved when bending forward and then had me hop up on the table.  He positioned my body in such a way that it engaged the ligament at the front of my hip and then he put pressure on the front of my pelvis.  He explained that there should not be any movement in this joint, but if there was, the movement would be measure in three grades with one being the least and three being the most.  He measured my right hip three times to be sure and decided that it had grade 2 movement and the left had grade 1.  This meant that my SI (SacroIlliac) joint was highly unstable and likely affecting my other joints as they struggled to compensate.  When he checked my thoracic spine he located sprains in my T5-6 and my T11-12 joints.  I didn't even know you COULD sprain your spine!  Interestingly, in all of the people with EDS he has assessed, he had never come across anyone with a T11-12 sprain.  This explained the pain I was experiencing in my mid-back, and was where I expected to begin my Prolotherapy, but he told me that it would be wiser to begin with the SI joint because if it remained unstable the treatment in the thoracic spine would likely be undone or unsuccessful anyways.  

    The next week we finally met with the specialist, more than six months after I initially filled out the form.  He walked into the office, greeted me and my husband, and then gave the following speech (paraphrased as I didn't record it 😉 ):

"I assume you're interested in Prolotherapy since that's what I do, but before we can consider that you need to get past four mental leaps: 

1. This is going to hurt and you can't do anything to help the pain

2. You're going to have to do this repeatedly, not just once

3. You will be paying me a lot to hurt you and insurance won't cover it

4. This may not work"

    Thankfully I was aware of all of these things and had already made these "leaps." We discussed the findings of the Spinal Stability test and decided that the wisest course of action was to address my SI joint first since any help we gave the thoracic spine may be undone by the instability in my pelvis.  The challenge is that the SI join is large and requires more injections to do, creating more inflammation, which was my primary concern to begin with.  I have chronic Lyme and potentially Mast Cell Activation Syndrome (MCAS) both of which do not do with with inflammation.  The doctor assured me that he had worked with others with this particular "constellation" of conditions (EDS, MCAS, and Lyme) and that there had not been significant flares caused by the Prolotherapy.  The treatment calls for at least three sessions of injections to start, with more if needed, so just to be safe we decided to do just the right SI on the first session, then if that went well to do both the right and left for the next two.  After this first set of three treatments, I'll do another spinal stability test and see if it helped, adding more if it helped some but not enough, and eliminating this as a treatment option if it didn't help at all.  I've been dealing with some pretty significant inflammation in my jaw following some dental work the last couple of weeks, so I will admit I'm pretty nervous about how my body will react to this, but I guess I won't know until I try!  My first treatment is in two days and I'll write an update a few days later to let you know how it all went.

Here's the thing: Yes, I'm scared about doing this, but I'm more scared about doing nothing.