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

\”Pain Does Two Things: It Teaches You, Tells you that you\’re Alive.\” ~Butcher

Written by Katie. Posted in Prolotherapy

Yesterday was Toledo.  Today was Mishawaka.  Brad has been a trooper, driving me all over.  I’m not really sure what I was thinking when I scheduled these appointments back to back, but at least my appointments (besides PT) are done for the week.

Today I went for more prolotherapy.  If you recall from my last prolo visit, Dr. Cantieri focused a lot on my “hip.”  Well, this time, I am happy to report that my “hip” has been doing quite a bit better…it is actually my stubborn neck and shoulder blades that have been giving me fits lately.  And by fits, I mean pain and headaches.

When I saw Dr. Cantieri we discussed the pain in my neck and my back…and then he asked me quite a few questions about my left arm, where my median nerve was removed.  Dr. Cantieri and Dr. Lavallee know each other well and share quite a few patients, so as we were talking about my workout with Dr. Lavallee, it came up that Dr. Lavallee really picked up on my overall muscle imbalance from losing so much feeling and strength from my left arm/side.

Side Note:  Because of the accidental median nerve removal, the stump of my nerve was buried into a hole that was drilled into my bone 12 years ago.  I often wonder if I should go back to the Cleveland Clinic and see if it needs to be redone, since the surgeon told me, “give it 10 years until you come back.”  That was 12 years ago.  It’s one of those things that when I think about it, I get really, really tired and overwhelmed at the thought of going forward with a big surgery like that one.  I have decided up to this point that I’d rather just live with it, like it is for now…

Anyways, Dr. Cantieri started feeling around my left arm, which by the way, is usually a NO TOUCH zone because of the electricity and shockiness I get from the stump of the nerve, but I gritted my teeth while I listened to him explain how he recently attended a course on Neural Prolotherapy.  Neural Prolotherapy basically means injecting along the neural pathways instead of the tendons and ligaments.  Because the nerves are treated, it is not as deep of a treatment, and therefore, only dextrose (no lidocaine) is used.

The New Zealand doctor who taught the course found that many of his patients actually had more nerve related injuries, rather than tendon and ligament related injuries and therefore responded much better to the Neural Prolotherapy.  Dr. Cantieri, thinking aloud, wondered if I was one of these people, because of all of the nerve related pain and “activity” I have throughout my body.  He asked if I would be willing to allow him to do the Neural Prolotherapy through my neck and shoulder area to see how I responded.  I agreed, knowing in my heart, that a lot of the pain I experience stems back from when my nerve was cut many years ago.

Dr. Cantieri starting marking my “spots,” (while Brad called me a light bright) and then started the injections.  He told me that most people think the Neural Prolo is a “walk in the park” compared to the regular kind.  But as he began, I quickly realized I must not be “most people.”

Holy crap balls. I was NOT a fan.  It was the most painful prolo I have ever had, and I have had a ton.  My best description of the pain was I felt like my neck was lit on fire.

I started the treatment sitting up, but as I started dripping sweat and losing color from my face, Dr. Cantieri thought it would be a good idea to finish the rest of the treatment with me lying down with my feet up.  I’m pretty sure this was a very smart move, seeing how my blood pressure goes up and down like the Magnum.

Anyways, I finished the treatment without passing out (bonus) and was told to come back in 2 weeks.  (2 weeks is the longest you are supposed to go in between this type of prolo to see if it is effective).  So it will be back to Mishawaka for this girl before school starts.

Now, 4 hours later, as I sit here and type, I am not nearly as sore as I usually am after the regular prolo sessions.  Call me crazy, but if I am being honest I am kinda missing that sore, stiff feeling that comes with the usual prolo.  It is just hard for me to stop wishing for the stiffness from prolo that brings joint stability…something that is often missing from a type 2/3 EDS’r.  However, I am keeping an open mind about this new treatment, and am hoping that I will feel lasting results.

I will update on my Five for Friday this week about how I am doing.  Dr. Cantieri said I could notice different effects within 4 hours or 4 days.  I could get flare ups or I could experience zero pain.  He added that when it comes to this kind of treatment, it is hard to know how the body will respond.

Well, I am hoping for less pain and no headaches.

That would just rock.

I admit it. I cropped out the zits on my face in this pic. Lately my skin thinks it’s 13 instead of 30.

You don’t want to know what I was thinking when Brad told me to smile.

After I was done, I did this before getting in the car to go home. Just joking. This was BEFORE my appointment.


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Comments (2)

  • Ila


    You rock little lady! I have been thinking about you so much this week with gymnastics on. Ya know….That would have been us winning that Gold (well, you Gold, me Silver) for the USA if EDS didn’t have other plans for us! I’ve cried a few tears, asked God why twice and prayed that you are smiling through about 56 times! You are sooo right! WHO can rock the splits like us in our mid-30’s? So, I guess we do have more than fat legs and old medals to show for it! I told Andy last weekend at Niagara Falls….”You know honey, I am NOT the only person that does at least one awesome gymnastics trick for a photo everywhere I go….Katie does this too”. Did you see the “Cartwheel, waving, swimsuit, on the beach” photo from Maine? That one was for you! I love you and I thank God for your friendship, the laughs and your inspiration in my life! OH! Don’t get prolo that you don’t feel stiff from later! That’s no fun!!!!! Ahhhhhh, Stiff! I LOVE PROLO and I love you EVEN MORE!!!!! Tell “Mr. J” I said hello!


  • Ila


    I JUST realized this was TODAY! I hope you are feeling good sweetie! I’ll call you tomorrow! ONE of these prolo sessions we are going to have it at the same time and we can Facetime prolo! Take it easy girl and I’ll call and check on you tomorrow! :O) Lots and Lots of love and some very gentle hugs!


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