Well this is a hard one. I read another blog on Popliteal Artery Entrapment and the McGinley Method... and The treatment didn't work until the third time and I remember reading it thinking "that really sucks I hope that doesn't happen to me"... but ironically that was the exact blog that convinced me to do this. I just loved how McGinley didn't give up on her and tried new things. He's a pretty innovative guy so trying different things and seeing what sticks is sort of what we need when dealing with something that doesn't have a very good viable treatment option.... and here I am, throwing things at the wall hoping something sticks. The difference is that that girl tried surgery first and surgery failed and surgery actually created scar tissue that made the pain, not the entrapment itself... So it's hard for me to imagine what could possibly be still wrong with me. I'm just such a McGinley fangirl at this point. The guy diagnosed me so easily after years and years of looking. He knew exactly what was going on. The process is so smooth- No waiting between tests, and he actually spends a good amount of time with you directly answering every single question. Even the follow up, I know I'm going to be getting a call this week. It just is a really high standard of care that I haven't received too often (I guess that's the benefit to paying out of pocket... or the benefit of flying somewhere where the population is a lot less)... Anyway, Here's the update:
So pretty much immediately things were going better after this treatment. The first treatment I had that initial significant relief in my shins, but then throughout the 6 weeks before I made the decision to go back to Wyoming I had pretty consistent cramping. I wasn't reporting it necessarily because I totally just assumed it was normal- maybe it was maybe it wasn't, but either way I limped a lot and was in pain working... it was rough.
This time has been very smooth. I started lifting, I swam, I rock climbed. It felt different from the first treatment in almost every way which made me start to rebuild hope, which is the worst thing, to be honest. I kept talking myself out of believing this could work... but it's hard to not have a little hope. That's how we survive. And I know, I'm not technically dying, I'm not sick, and I'm overall still pretty healthy... so to some maybe this is dramatic... but it has been a bit like dying slowly for me... Like everything I love to do in life has been slowly taken away and I only have so much energy to deal with all of this. Holding out hope prevents me from moving on.... and I'm torn between accepting my fate, or holding out hope.
Anyway... Not much energy to get into the details, but right around the 12th day out I could really tell the botox had set in. Just some of the signs from the first round like the slightly wobbly joints etc when I was lifting (I have been lifting 4 days a week) were noticeably different. I waited until day 14 to run and all went fine. I even got myself out the door in the rain and felt like a badass because if this is any indication of my commitment I'm ready! Things went fine! Still felt weird but they were fine! I was so relieved to make it through (10x 1:00 run 1:00 walk)
I took a day off in between, and was eager and nervous to get to the next one run. I have yet to have a successful every other day 10x 1:00. I just had a bad feeling from the start. Unlike last time everything felt fine but I just had this looming cloud of doubt... or maybe intuition.... But I ran anyway because it's part of the atrophy process. I have to actually use muscles or it doesn't work! First repeat felt fine... Second one I'm not so sure. Third one I texted Matt that I wanted to quit because I was so afraid of something going wrong. It just felt so weird and I was one minute away from the interval that typically gives me trouble... And then... Boom.... Like clockwork. BIG TIME CRY FEST!
I'm not sure where to go from here. I'm going to be connecting with the Nurse, Jen, this week anyway. I'm concerned about nerve damage and have questions about nerve damage. Maybe I ran before the Botox totally set in (although I don't think so... At this point Im' convinced there's something not showing on the scan that they missed) ? I'm not really sure. There isn't a lot of documentation on the McGinley Method failing in this sort of way that I can find. Some people in the support group have reported similar stories, but it's hard to really get the answers without prying into someones long term health history... So here I am... Continuing to share all this shit just in case someone else goes through it.
Surgery is still on the table. Dr. Sarkar is on my list in Maryland (at least Matts sister lives there, so we can make a trip out of it) but right now I'm still team McGinley Method. I don't even know how surgery would even be an option when my scans clearly show unentrapped arteries. It's clearly working to some extent, so the only thing I can think of is that the Nerve is damaged and need time to heal.
Now that I know what it's like to not have pain during sitting and just regular walking, I've realized how far I pushed beyond what is reasonable for a normal person. I just didn't know. The changes happened so little at a time that I could normalize each little change little by little by little not realizing how far I had come from my original baseline. Anyway... This is more of an incoherrant rant than anything else, but in case someone just had their botox and is getting sharp shooting pain but their scans show the botox is working.... and they don't know where to go from here... I'm going to keep blogging. For now I'm following through with McGinley. It could be blind delusion, but of all the doctors I have seen, he made diagnosing this look easy. If he was my first stop and I hadn't had all this other trauma from previous treatments failing, and if insurance covered this I wouldn't even question if I keep going or not. I just would. So I'm trying to compartmentalize all that I've been through and treat this like my very first stop on the treatment.
My sister said to me "yeah, it's kind of a gamble, but one option you're gambling money, the other your gambling your body... seems like an obvious choice"... So gambling money it is.... I'm just gonna need more to play with. Child Tax Credit right around the corner.
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.