It took a third trip to Dr. McGinley’s offices in Casper, Wyoming during the week of Thanksgiving, and I’m happy to report that I’m officially pain-free and back to normal activity!
I had planned to post sooner; however, with the frustration building after my second round of Botox not working, I not only didn’t have the mental and physical energy to do regular updates, but I also didn’t want to jinx myself after round three. With the huge let down of not feeling any relief, it was tough to make the decision to go back again. In this post I’m including not only why this round actually worked, but also what led me to giving this a third try.
My pain got progressively worse after the second round of injections. My right leg also would turn a different shade of black and blue after a day of standing and walking around my office while continuing to swell in the area above my scar.
I still couldn’t stand for more than 5 minutes at a time on a good day, and forget about walking around. By the time I would get home from work at the end of the day, I wouldn’t even be able to stand long enough to wash dishes. I had to wash in shifts. It was terrible, and I was constantly drained.
They thought I had a Seroma.
I learned from Google that a seroma is a pocket of fluid that can develop post-surgical procedures during the healing process. Although I didn’t have a recent surgery, Dr. McGinley did inject a layer of steroids directly into scar tissue from my fasciotomy in order to break it up. The scarring had grown onto my shin muscle, so the hope was to relieve pressure from that angle as well.
After regularly sending photos of the swelling and bruising to the McGinley team, they were concerned that a seroma could have formed. I was subsequently sent to get an ultrasound which ended up being inconclusive. I was then referred to Stanford Medical Center to have a detailed MRI with contrast done and reviewed by one of Dr. McGinley’s former colleagues and top radiologist at Stanford. All looked normal. No seroma was found.
The McGinley team was perplexed but supportive.
When all of my additional imaging came back as normal, it felt like my world was crumbling. I never wanted something to show up on those scans so bad as I did after my visit to Stanford. With my leg looking deformed from the outside, but normal on the inside, I couldn’t help but become even more depressed than before. Was I crazy? Was I making up the pain?
After months of check-in’s, Dr. McGinley personally called me to talk through options. Basically, they couldn’t be 100% sure that a third round of Botox would work but were going to do everything they could to try. My case wasn’t the norm, and the fact that I was coming back to their offices for a third time within six months was a big deal.
Therefore, they planned ahead and reserved a full day for me at the medical center. A game plan that involved the normal CT-angiogram and then additional MRI’s of my back and sacrum were also ordered. I would only take the MRI’s if Dr. McGinley felt it was necessary based on my CT scans, and I truly appreciated all of the thought and planning they put into my visit.
Thankfully, I never had to take the MRI.
They discovered a hernia.
The swelling I had been seeing for months was actually a hernia. It was a small bit of muscle that was protruding from the edge of my fasciotomy and under my knee. It was too swollen and aggravated to go back down into the fascia.
The team said all of my MRI’s looked normal because I’ve always had the hernia since starting with them. Apparently a hernia is a common side effect of the fasciotomy surgery, and although most people don’t have negative effects from it, it was the only thing left in my leg to treat.
Shooting up the hernia.
Given the positive effects my body has had with the Botox, Dr. McGinley used the standard medicine to inject a broader area in and around the hernia. The goal was to get that thing smaller and back into my fascia while treating more areas of my shin.
Although there was a risk that my foot drop would get worse, I was willing to take it to get rid of the pain. I figured that the worst case scenario would be for me to work with a physical therapist to rebuild the muscle and regain strength. Thankfully, I haven’t had to do that.
I had the procedure done a few days before Thanksgiving at the end of November. I noticed a difference in about 2 days post-procedure. Here’s what I experienced during the first week:
- My leg didn’t feel as tight at rest.
- The bruising started to quickly disappear.
- I could shop during Black Friday with my mom for hours without noticing any pain.
- There was no throbbing or aching feeling.
- The muscle didn’t hurt when I pressed on it.
Overall, this experience has been a lot. Three years in chronic pain is no joke, and I still pinch myself every morning that I’m back to normal. I never thought I’d be able to work out again, let alone not feel pain every day.
This may seem aggressive, but I’ve since signed myself up to hike Mt. Kilimanjaro in Dec 2019. I’ve spent three years of my life immobile, depressed and hopeless and am incredibly grateful and excited to push my body to the limits by embarking on the trek of a lifetime. Fingers crossed no compartment syndrome symptoms creep back during my training, but I’m thinking positive that I’ll be okay.
Thanks for reading! Stay tuned.
7 thoughts on “Third Time Was a Charm!”
Hi Alexia, thank you for sharing your story. You remind all of us patient’s with CECS and fPAES to have hope and not give up. I love how you specifically shared that you went back for a third treatment, and that was successful. I’ve been treated once out in Casper, WY and am patiently waiting for results. I probably will be back 1-2 more times because I’ve had my symptoms for 12 years and they are severe.
Hi Christine – thanks for reaching out! I’m sorry it has taken me months to get back to you, but I hope that the treatments have been helpful! Wishing you the best and a speedy recovery 🙂
Hi alexia, I’m so happy to have found your blog,
I’m contemplating the Botox shots from dr Mcginley but I’m skeptical as well as curious what the long term side affects of causing atrophy to the muscle causes. I would really like to speak to you on this. It’s actually both me and my 16 year old sister looking at the prospective of surgery
Hi Dez – apologies for the delayed response! I hope you’ve been well!
To answer your questions, I was also worried about side effects from the Botox in regards to muscle atrophy, etc. During treatment, I had used two different types of Botox and ultimately had no negative side effects. The only thing I have in my right leg is a slight foot drop and weakness in my shin (I can’t raise my right foot as high as my left). The weakness in my right foot does not affect my activity levels or day to day in any way 🙂 To me, my side effects from the Botox are much easier to deal with and manage than the side effects from surgery. I’m still recovering from my Fasciotomy because there were a number of nerve endings that were sliced during the procedure. Therefore, I still have nerve damage and touching the exterior of my ankle and top of my foot give me shooting nerve pains (not fun). How are you and your sister feeling? Thanks again for reading 🙂
Hey Alexia! Thanks so much for chronicling your journey for us fellow, frustrated CECS sufferers. I was hoping to see how your pain has been since you’ve had your third round of Botox? I have been in chronic pain for 4 years now, 1 failed fasciotomy on one leg, and due to being type 1 diabetic i’m unwilling (right now) to go through a surgery on the other leg or a second one on the right leg since it did not work. I’ve been heavily considering Dr. McGinley and the botox treatment but am concerned it won’t work for me. Your blog has been inspiring and am just curious how you are doing now.
Hi Jenna – thanks for reaching out! Thankfully (and fingers crossed) I’m still going strong and doing normal activities since my procedure last fall. I’ve even been training for hiking Mt. Kilimanjaro in December. I’m very sorry to hear, though, about your 4 years of chronic pain. I was in it too for about 3 years and can’t imagine having to go through an additional year of suffering! Those surgeries aren’t easy and my failed fasciotomy also left me with residual nerve damage. Although it was a different type of process, I am very glad that I went through with the Botox treatments. Dr. McGinley and his team were incredibly supportive and knowledgable. I hope you can find some relief soon! Please don’t hesitate to reach out if you have any further questions 🙂