It's been a while since I updated. In November I was finally feeling like my nerve or whatever had been making running impossible was mostly a thing of the past since I was running again... But I was 6 months or more out from my last Botox injection so when the shin pain increased fairly significantly at the end of November and early December, I wasn't surprised to be shot back to the reality I've lived in for so long. Instead of giving my leg some rest and trying again, I assumed the Botox was worn off and I needed to get back to Wyoming for another set of injections. At this time Omicron was RAGING. Literally everyone I knew had or was exposed and quarantined for Covid... and we did not have the money we needed yet. I was always hoping to get out there in February during my school vacation but When my calf blew in December I was hoping to move it up to January but that just wasn't a reality.
I had been in contact with my brother regarding his own worsening calf condition, and although he was still able to run and symptoms were mild, he had just about had it with PT and all the stretching and warming up and the mental gymnastics saying it was something other than what I had. At this point I'm fairly confident my Dad has this condition and my brother Brian... so not a hard stretch to assume my brother Matt who is experiencing symptoms I had 5 years ago, has the same thing. He has a way better credit score and no kids so he spotted us some money and we all went together in February.
Long story short, this turned out to be a great trip for all of us.
My scans were great!
The first time I went out I was so full of hope but when things went south and my nerve was still so sensitive, I was skeptical. Then the second time I went so close to my first treatment, that I knew everything I saw on the scans was with the botox active: Meaning that sure the scans look good now but how will this look when the botox wears off? These scans were exactly that. It had been 8 months since my second visit (my touch up injection, so technically and extension of my first visit) and my legs were maintaining their improvements almost completely! There were also some true indications of atrophy that I could see with my own eyes! This gave me more confidence. I've known this whole time that I'm taking the right path for me, but that doesn't mean it's easy.
It was pretty cool to do the whole thing with my brother, but I was more stressed about him than me. I at least knew I had the condition... and the first time I came out I was legitimately at a dead end. There was no other option for me available with Covid preventing me from even exploring surgical options... so it was logical for me... my brother was still running, I think he even got a 7 miler in just before we left! But we had already done the deposit and I was like "well, if you don't have it, you don't have to pay for the treatment and whatever else going on will show up on the CT"... Usually doctors will be able to identify old injuries or hernias etc. So.... no big deal. His insurance also was a lot less of a PITA than mine, so his scans were approved quicker than mine (which was approved this third time, Thankfully!)
We had a lot of fun exploring Casper this time and actually going to Cafe's and walking around town. The white tops on the mountains were beautiful, and even though the winters can be brutal 1. We're from New England so... we know brutal winters and 2. We lucked out and it was 40's for the handful of days we were there.
Anyway... Turns out my brother also has the condition. He had extremely mild artery entrapment... So mild that it didn't even result in a fPAES diagnosis... but his veins were more entrapped so he has compartment syndrome only which means his chances of only needing one treatment are much higher. For perspective, my condition has improved greatly and still is much much worse than his after two botox treatments.
Dr. McGinley and I decided on Xeomin this time for a myriad of reasons... his research primarily uses botox so he typically starts with that, but some patients respond much quicker to Xeomin and it can be active in the legs quicker, so with me registered for the Boston Marathon like a fool, quicker activation is better for me. Bring it. My brother got the botox.
The first time my husband (also Matt) and I went Dr. McGinleys goggles were not wireless. The second time they were, and this third time there was a set for "guests" so I could wear a headset and watch the needles be injected through the ultrasound goggles. Cool shit! Anyway, the injections feel worse every time. I think my awareness about the discomfort increases my discomfort... but it was quick so, whatever... It is what it is. After that, we just hobbled around and got dinner and then the following day drove to Boulder Colorado and drove up a mountain there. We weren't supposed to do much walking around so we kept it light.
We had a red eye flight which set me up for a cranky week. I had cracked my bonded tooth at Crossfit just before leaving and had a bajillion appointments before and after the botox.... I'm so craving a break from all the needles and goggles and people poking and prodding me. My final tooth still hasn't come as I write this (March 20) but I guess next week I'll be able to put the permanent crown which should be a perfect match for my recently whitened smile. Can't wait to just have my whole life back together. Legs fixed, lose some weight, (did I mention I got my hair done before we left too), and then have a nice new smile to match my mood.
Welcome to my blog! I've been blogging for a long time on various platforms. My intention has never been to reach the masses, but rather to give myself a chance to reflect and journal. I feel it at least challenges me to be somewhat coherent, however you can expect ramblings and grammatical incorrectness here!
I've recently been diagnosed with CECS and fPAES and had it treated with BOTOX of all things... So I suspect to see more and more people looking for answers with that in the future and hope to continue blogging so there will be easy to access follow-ups as that was helpful for me.
NOTE: Apologies that some of the pictures incorrectly load sometimes. I try to keep up with the glitches, but can't always! Hope it doesn't impact the blog experience for all the PAES visitors.