Botox, a Miracle Drug? Countdown to my last resort…

The most mentally debilitating part of dealing with chronic exertional compartment syndrome (CECS) and popliteal artery entrapment syndrome (PAES) is the constant struggle of finding the right doctor with a solution that actually works. I can’t even begin to share the state of frustration and plain exhaustion I’ve been suffering through for the past 2.5 years.

In other words, I am desperate to try anything to relieve my pain and get me moving like a normal human again.

A few months ago, I came across a procedure that was unlike any other and legitimately seemed too good to be true. Apparently Botox, of all things, is used to correct PAES and CECS symptoms. Crazy, right? I figure since I’ve been under the knife multiple times with no relief, what could go wrong with a little Botox? If anything, maybe they can do some quick injections on my aging face while I’m at it!

 

Surgery
Post passing out from getting the IV, pre-fasciotomy operation and hopefully the last time I’ll be in a surgical gown for this leg stuff.

 

I digress… since it was tough for me to find consistent and up-to-date information on the procedure itself, I’ve put together what I know and what I’ve been told while signing up. Hopefully it’ll be a starter for some questions you may have:

 

What is the Botox Treatment?

Also known as McGinley Vascular Pressure Treatment, Dr. Joseph McGinley injects botulinum toxin into an area of the muscle that is compressing blood flow in order to essentially paralyze the muscle locally and allow blood to flow normally. Seems logical.

 

Where can I get the treatment?

Casper, Wyoming of all places! Apparently Dr. Joseph McGinley is the only doctor worldwide who does this procedure and has his technology patented.

 

What is the process?

I haven’t gotten the procedure yet, but here’s what I know so far:

  • In lieu of the uncomfortable and sometimes painful pressure tests, Dr. McGinley and team use a MRI to determine any changes in your muscle before and after activity.
    • Get ready to have a MRI before any activity, then a second MRI after walking/running on a treadmill
  • Next, a CT Angiogram is done where you’re hooked up to an IV (not my personal fave as I basically psych myself out with every needle and injection). Contrast is added to the bag and the team will track your blood flow to determine whether you will be a good candidate for the Botox injections.
  • After these two tests and a brief discussion with the doctors, (from my understanding) you decide whether or not you want the injections. If you choose yes, they do it right there!
  • Hopefully you’re cured! Or at least feel initial relief.

 

How many times will I need to do the Botox treatment?

I was told it’s different for every person. Some people only need one treatment, others may need 2-3 or more. I’m personally aiming for no more than 3 sessions, although just one time would be ideal.

A nice thing I learned from the McGinley crew is that they don’t schedule you for a follow-up until and if you start experiencing symptoms again, and they keep pretty close tabs on you with calls and emails to check on your progress.

 

How much does the procedure cost?

Ugh, this is tough. Not sure if I’m supposed to give away numbers, but if you factor in hotel, air travel (I’m flying from San Francisco to Casper) and the procedure itself, you’ll easily rack up minimum $8K. Also, there’s a $500 deposit required when scheduling your appointment.

**a note about the deposit: the staff in Casper is EXTREMELY friendly and seem incredibly genuine when it comes to accommodating their patients. They gave me additional time to submit the deposit and as long as it was done before my appointment, then I was golden.

Special shout out and thank you to my savings for funding this adventure, and I’m sorry in advance for the huge dent that I’m about to make.

 

Is it covered by insurance?

No. *sad face* The procedure is not FDA approved, so insurance companies can weasel their way out of paying. That being said, depending on your plan, your MRI’s / CT scans should be covered or partially covered.

I know it may not seem like much, but at this point when you’re shelling out a couple G’s for some Botox, any little bit helps. Am I right?

 

How long do I need to wait for an appointment?

The wait time is fairly lengthy. My appointment was scheduled about 2 months out and I waited a few weeks for an initial phone screen with a technician. Yes. You are essentially interviewed prior to scheduling the procedure and are required to go through a phone screen.

The phone screen will run you through the procedure, talk about your medical history and include as much Q&A as you’d like. The man I spoke with was very friendly, helpful and transparent about the entire process.

 

Ziplining in Cancun
Pushing through the pain to keep my love for adventure alive.

 

Anyways, apologies in advance for the information overload! If you’re like me and WebMD-ing / Googling the crap out of your symptoms, then you may not mind the length.

Also, I’d like to further emphasize that I have not yet had the procedure. These are the things I know prior to getting it done on May 25, and I hope it helps to clarify a bit more about the process. I am looking forward to sharing more on my thoughts around why I’ve decided to go through with this procedure and the post-op experience. Fingers crossed for success.

Stay tuned!

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