Progress Report: 1 Month Later

It has been just over a month since I had undergone Dr. McGinley’s procedure to correct and alleviate any symptoms of Chronic Exertional Compartment Syndrome (CECS), and I’m incredibly disappointed to report that I have not had much relief. Even though I followed all instructions given and pushed my leg a bit more with some recent travel and activities, I still feel like I’m back at square one.

Pressure Test

After speaking with some representatives from McGinley’s team in the past two weeks, they’ve determined that I need a ‘touch-up’. It’s tough for me to justify trekking back out to Wyoming so soon, let alone having to shell out some additional G’s for the procedure itself. However in this post, I’m including some of the feedback from the McGinley team along with my own personal symptoms and rationale as to why I’m considering going back.

Hopefully this will be helpful for anyone going through the same predicament!

Symptoms: To recap, I have been diagnosed with Anterior Chronic Exertional Compartment Syndrome and have had at least one unsuccessful fasciotomy surgery. Let’s start with my past and current symptoms:

Original Symptoms:

  • Pain underneath the shin bone about 1-2 inches below my knee.
  • Pain felt like a knife scraping the area under the bone.
  • Pain increased with activity (mostly walking and standing) and decreased while sitting / at rest.
  • Area where the pain was would swell and it felt like there was a tight lump along my shin bone.
  • Soreness in the entire calf area and muscle increased after a long day, so my evenings were spent trying to roll it out.
  • As the pain worsened over time, it took longer to recover. Usually it was about 30-40 minutes of recovery after light activity (walking), but if I overexerted myself, sometimes my leg wouldn’t go back to ‘normal’ pain levels for 2-4 days.

Current Symptoms:

  • All of the above except the anterior compartment doesn’t swell as much as it used to.
  • In some cases, I may have a slightly faster recovery time but it varies.
  • My leg tends to hurt at all times by the end of the day, even if I have it elevated or am sitting.

In all honesty, I want this Botox treatment to work so badly that I’m not sure if I’m imagining any of the alleviated symptoms post-procedure. I would like to think that my pain subsides more quickly than before, but I can’t 100% say that is what’s happening as the progress changes day by day depending on my activity level.

What McGinley’s Office Said:

After the first 3 weeks I received a call from a nurse at Dr. McGinley’s office who is responsible for checking in with every patient post-procedure. When I mentioned to her that I have felt no relief whatsoever she immediately mentioned that I might need a touch-up.

Injections

What is a touch-up and why might I need this?

The Botox isn’t permanent and the results aren’t statistically permanent with one go; therefore, multiple sessions are needed. I was told that typical patients feel relief from the initial treatment after 1-2 weeks with some needing up to a month for the medicine to kick in. The touch-up (round 2 of the treatments) are needed usually around the 6-month mark. Obviously I didn’t even come close to making it there…

How much does round two cost?

Welp, unfortunately, this next round is still not covered by insurance; however, patients that need a ‘touch-up’ within the first three months of initial treatment, there is a slight discount. For me personally, I’m looking at $2-3K all in for round #2.

Patients needing a touch-up after the 3-month mark are looking at $5-6K for treatment (slightly less than the initial rounds which can be up to $8K).

Why do I need a touch-up so soon?

IV time
Trying to negotiate my way out of getting an IV…

Who the heck knows, but McGinley’s office gave me two possible scenarios to noodle on:

Reason #1: The Botox helped, but not enough to relieve any pain.

There is a possibility that the Botox did in fact work; however, it didn’t work enough to relieve me from any pain. Usually the signs of it working slightly could include:

  • Faster recovery time
  • Takes longer to feel any pain during activity
  • Less inflammation

Reason #2: I have an immunity to the Botox medication they used.

So apparently this immunity is pretty rare, like only 1-3% of people are immune, rare, but it is possible.

What I mean by an immunity to Botox is that within the medication, there is a protein complex that can be blocked by some patient’s immune system. Essentially their antibodies take over and neutralize the effectiveness of the Botox, aka it doesn’t work. Here’s a cool article I found that explains it a little deeper.

McGinley’s team recommended I come back for a follow-up and at that time they will determine if I need a type of Botox manufactured without the protein in question. If that’s the case, they will use the secondary medicine (that has the same desired outcome) but is made by a different manufacturer.

How I’m feeling about it:

Well, not great to be honest. Not only do I still have intense pain when I walk even just around my tiny 600 square foot apartment, but I’m starting to dig deep into my savings. There is a part of me that’s also nervous that maybe there’s something else going on in addition to the compartment syndrome, but who knows. The McGinley group didn’t mention anything else when they did their initial scans, and they seemed very confident that I would be healed with their procedure.

I do have a standing appointment with the top surgeon in the country for CECS (this has always been my Plan B). Dr. Turnipseed who is based out of Wisconsin and works at the vascular clinic at the University of Wisconsin in Madison. He is extremely skilled and experienced in CECS and has written a ton of great articles on the subject. My original vascular surgeons for my PAES actually know and learned about these two medical conditions from him. As it’s tough to get a secondary appointment scheduled with McGinley (I’m currently on standby for an appointment at the end of August), my appointment at UW is at the end of July.

Not sure which route I’ll take yet. I’m leaning more toward the Botox to avoid another surgery, but who knows. The pain is so crappy that I’m becoming more desperate and slightly down on myself. Will continue to try new methods for pain relief in the meantime, and will keep everyone posted on the progress!

Keeping positive. Thanks again for reading.

IMG_2208
When I could walk: hiking around the Rainbow Mountain, Peru

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s