It's been 5 months since I last blogged. What a roller coaster. Last I left off I was waiting for my appointment for an Intravascular Ultrasound, a procedure that I thought was the only thing left to do to rule out or confirm PAES. I was wrong.... Insert "McGinley Method" here. Apologies in advance for the extremely longwinded post I'm about to write. As someone that has spent every waking (and supposed to be sleeping) moment reading blogs about my symptoms, the ones I found on the McGinley Method were super helpful, hopeful, and still receive questions and responses years later. If you're reading this because you follow me on instagram, you already know I like to give way more details than necessary. If you're reading this because you googled fPAES, CECS, The McGinley Method or something similar.... Check me out on instagram to see what I'm up to, now! I try to keep up with blogging, but no one has the stamina for my storytelling and bad grammar these days, so instagram is where I'm at more often. With that being said, as a person seeking information about diagnostic procedures etc. Blogs are much easier to access once a certain amount of time has passed. Social media is helpful with the hashtags etc. but ultimately I found the blogs to be the most helpful for me, so I'm paying it forward here. So lets get into this super long post on The McGinley Method.
Lets go back a few months....because I love a good back story....It was really stressful to be told I had Fibromuscular Dysplasia, but I felt like I gave myself time to grieve and processed that whole diagnosis fairly quickly. I actually started to feel comfort just knowing I could put a name to what I was experiencing and that I could stop blaming myself for it all. I finally had something concrete that I could point to instead of scanning the internet looking for answers and begging doctors to believe me. I could finally relax and move on and learn to live....
........obviously that didn't last long. Once they got the scans of my brain it became clear that I had the most mild case of Fibromuscular Dysplasia ever as I mentioned in my previous post. They suspect many people are living with these really mild cases but have no reason to get a CTA so no one will ever know. It was clear that I came in for the scans for something else, the FMD was just a small anecdote, but definitely wasn't the culprit of my worsening condition. I like to make it very clear that at this point my number one goal was to eliminate the tingling feet and the constant dull pain just in my every day life. Sure, it'd be great to run again, but it wasn't about running anymore. I was told by the FMD specialist to go try running so that I could remind myself of my symptoms. So I did. I ran slow and took a strong mental picture of exactly how the pain came about. I was symptomatic from the start and only able to run for 3 minutes before the shooting debilitating pain came. Pain that I would call "calf pulls" but at this point I was aware that I wasn't actually pulling my calf muscle (since it would recover) but something really sharp was signaling that I could not run another step. I was supposed to make an appointment with them to get literally all the tests I had already done with someone else done by them. Isn't the definition of insane? Doing the same thing over and over and expecting a different result? They were literally asking me to be insane (and I already felt it so, what the hell?!). They didn't trust my stryker test results, and didn't trust the doppler ultrasound ABI results and wanted them done by their team. At this point I already had told them I'm pretty certain I have the FUNCTIONAL Popliteal Artery Entrapment syndrome which doesn't have any anatomical abnormalities. So they scheduled an intraveinous ultrasound where they put a camera in my arteries and go look for the problem. I think what has made an already difficult diagnosis more difficult is that after I had Maebel I've had that really intense hip pain that I've documented here in all my failed marathon build ups and at this point I've mostly resolved with strength training and rest. So hip related things like "illiac endofibrosis" and "sciatic artery something or other" and "illiac artery dissection" were more prominent in their differential than the one that I've been handing them on a silver platter. Because after all, I was too old to only find out about fPAES just now, and I successfully managed to qualify for Boston with this condition and that was "impossible". Don't get me wrong, the care I received wasn't completely dismissive. They reassured me every time that I'm not making this up and that they will find what is wrong... I especially appreciated that the surgeon himself would call me instead of his secretary... but with Covid spiking, elective procedures were cancelled and I was postponed to May 12th.... In the meantime I took up Rock Climbing because "it's mostly arms" (wrong) and I was progressing nicely but eventually even had trouble climbing due to this condition. I had to take things into my own hands. I just couldn't put my life on hold that much longer....
I had seen the name “Dr McGinley" pop up in the support group a lot but I also had this giant ego about the Hospitals here. WTAF could the middle of Wyoming offer that we don't have at Mass Fucking General?.... Well, as it turns out... This guy. Since I couldn't go to Mass General, I decided "what the hell" and thought I'd attend the webinar Dr. McGinley was putting on. As it turns out he has a patented procedure for diagnosing and treating Compartment Syndrome (which we already knew I had) and Functional Popliteal Artery Entrapment syndrome (Which I was convinced I had) that was not invasive and non-surgical. What is this treatment? BOTOX! Fucking BOTOX? Now normally I would have seen that and scrolled right past it. How is it possible botox could help? But back in 2018 I went running (2 miles, which I could barely do) with the head coach of the Professional running team that my coach at the time was part of and that my husbands shoe company On sponsored. He discussed with me my terrible foot pain and said that he knew it sounded crazy but some of his athletes had success with Botox. I looked it up. It wasn't FDA approved and cost a boat load of money, and required traveling. What do I look like? A professional runner?! This isn't my life! There is "NO WAY" I would "EVER" travel for a procedure I'd have to pay out of pocket for that sounds like a scam just to RUN. BOTOX?!.... Hah! ...
But here we are.... That conversation with Pete Rea of On Zap Endurance made it a lot easier for me to take the leap and really absorb the information at the webinar. Botox didn't surprise me as much this time since I already had such a reliable source recommend it... and unlike in 2018...it was no longer just about running. My foot would be numb at night and tingle when I woke up. My shins and posterior tib were constantly so sore that If it weren't for working at home (covid) and sitting I would be limping by the end of the day. I ran up the stairs once to see what the "thump" sound I heard was (Monster Maebel... obviously) and that sharp shooting pain gripped me and I was immediately limping. I had gained 50+ pounds... which sure, I'm still lighter and healthier than most people but I've prioritized my health my whole life and I literally felt like instead of living each moment I was dying each moment. I was depressed, and deeply sad and confused.... and then here's this guy in the middle of Wyoming saying "you're not crazy, we can get you back to your life"... and I believed him.
Of course... I was willing to believe anyone at this point. I so desperately needed help! Anyone attending the webinar got to do a consult with the nurse. I don't know if at that point everyone meets the criteria to come out there or if they do this to weed people out or to recommend other things to try before coming out or what... but the numb tingling feet seemed to be a symptom that matched what they expected and they sent me over the info to take the next steps. I nearly died when I saw the price... I was so hopeful in the webinar and then I crashed and burned emotionally all over again. It was hard to stay afloat. I put on a happy face every day trying to teach remotely with my 3 year old sitting on my lap, it's not like there weren't other stresses going on as a teacher in a global pandemic! I’ve basically reinvented my entire career, it’d be nice to not have to reinvent the rest of my life! How can there be such a simple solution and I can't access it!? and then....(Warning: Politics).... Biden became the President, Georgia flipped blue and the senate passed the stimulus.... I'll stay as non-partisan as possible but I wouldn't be me if I didn't squeeze this in somewhere, it's actually important stuff! Some of you know, some of you may not, but I spent a lot of time in 2019 until and February 2020 limping around New Hampshire campaigning for Universal Basic Income with the Andrew Yang Presidential Campaign. He may not have signed the first round of checks, or the second, or the third, but prior to the primary election, no one was talking about giving straight up cash to constituents to solve some of their problems... but I knocked door to door and made phone call after phone call and changed peoples minds on this idea every weekend for six+ months along with many many other Yang Gang members... so when those checks were passed I actually did earn it... and I could only think of one thing to spend it on (that's a big lie... I have a huge, huge, HUGE list since we just bought a home, but this was at the top with no where near a close runner-up). It's pretty messed up that we have to earn certain things that seem like human rights; food and shelter and medical care that actually *saves* the government, hospitals and insurance companies money in the long run... but... there are so many loopholes and so much red tape in all these programs meant to serve... that straight up cash is the best way to go... without it, it's no wonder so many people give up. I am not that person, though....
The actual Botox treatment was not going to be covered by insurance since it is not FDA approved (neither were my Covid Vaccines, but, priorities, I guess! J/k J/k, Ah! Stop being controversial, Caitlyn!) and even the parts that were billable to insurance were tough. Part of the procedure required bilateral pre and post exercise MRI's and bilateral CTA's with and without exertion for a total of 4 scans. Initially this was rejected by insurance because my Primary Care Physician wasn't the ordering Physician. Fortunately, my PCP has been writing referral after referral after referral after referral for me for several years... PT, chiropractor, new PT, MRI, another MRI, Ortho here, ortho there, CTA, another MRI, podiatrist, X-rays, another Chiropractor, more PT, more PT, more PT.... You get it... At this point he just copied exactly what McGinley wanted ordered and submitted it. It took a long time to even be reviewed, but once it was reviewed they accepted the MRI portions since I had only had MRI's on my left leg and not my right... but they rejected the CTA because with the fibromuscular dysplasia, they did a CTA from my chest down to my toes with contrast so I already had a similar study. Both my PCP and Dr. McGinley were quick to respond. McGinley did a peer to peer an explained that these CTA's were different because I was going to be flexing my muscles instead of at rest... and even still they rejected the CTA's. I submitted an appeal, but at this point I already had an appointment in just a week away (school vacation) so the 30 day turn around didn't work for me. We decided to put everything on credit cards and hopefully will get a reimbursement from the insurance company after the fact. As I'm writing this I am about 17 days out from their 30 day turn around and will touch base this coming week after I catch my breath from the whole experience.
Casper, WY- Here we come!
I had to explain many times why I booked the appointment before I had insurance approval. It seemed like Dr. McGinley booked out quite far, and with Covid and work and quarentining, I wanted to get it done on my school vacation so I could get tested 72 hours after my arrival home and miss as little work as possible. The entire world hates teachers for remote teaching and “ruining kids lives” and we had just returned to in person learning, so I wanted to do my best to keep things consistent for the kids. Fortunately I was able to get my vaccine and Massachusetts changed their travel guidelines for fully vaccinated people, so it ended up working out even better... but essentially getting back to work was a huge driving factor for the date I chose. We left the girls with our mothers who shared the load across the few days. We flew into Denver and drove 4 hours to Casper, Wy. There is an airport in Casper, however Matt's best friend is in Colorado so since this is such a monetary sacrifice, he should at least get something out of it, too! The drive was mostly fields, cows, and oil rigs. Legitimate cowboys on horses... Definitely met many stereotypes I had in my head, but also made me realize even more why the political opinions of people in the midwest can be so different from those of us in the big city. We just have very different lives! I try to remain open minded to how someone else's upbringing or livelihood drives their decision making... and we have this whole party of people rightfully concerned about climate change but one of the biggest things they discuss are oil rigs and excessive meat consumption... which seems to be the absolute essential to livelihood out here, it’s no wonder there’s pushback. Meanwhile, I think us city folk can definitely cut back on our starbucks consumption and plastic waste... especially since Covid, reusable things have been a no-go. I can see the hypocracy in it, for sure. Speaking of Starbucks, there wasn’t one in sight! (or literally another living soul), which was a sad day for Matt. (Haha, I’m joking, you’d have to know him.) We finally arrived in Casper and it did have quite a bit going on. We didn't stay long enough to really see what it has to offer and didn’t seem like the best time of year, but certainly anything you needed you could find. Our hotel was located near mostly chain restaurants (sans the Starbucks) which was disappointing, because I love unique food places, but also made it simple to get something quick... and even though the Covid cases are significantly less in Wyoming, i haven’t stepped foot in a restaurant yet, as it’s still high risk even if you’re vaccinated. Our hotel had a pretty nice view, so I was content eating in there. I'm pretty much sore 24/7 and really didn't want to go anywhere anyway. The timezone difference and traveling caught up to me quick and I went to be really early.
The first of four appointments of the day was the set of MRI's. We did one before and after exercise. I got an MRI done at rest and then was put on a treadmill for 10 minutes and asked to rate my pain and list symptoms. I had a little bad case of deja vu going on. The last time I was asked to run on a treadmill for diagnostic reasons I wasn't able to reproduce the symptoms and was basically told everything was fine and I was worried to repeat that scenario. The problem is that both methods on the treadmill use the incline to reproduce the symptoms... but I'm so damn out of shape that I honestly can't run on an incline with a normal stride on the treadmill. After two decades of running, this girl has figured out how to simply pick her legs up to run on the treadmill instead of actually.... RUNNING. I am more likely to produce symptoms when its flat and faster because I can actually run with my normal stride length and have to push off to keep up. This was similar but since the last test was a doppler ultrasound after, which was going more off of pulse and blood flow; my ability to return to a normal heart rate and blood pressure are better than most people so that was the reason for the negative test result according the the Mass General Doctor. This was different because it was an MRI and they were looking more for edema and excess fluid which should show up regardless of how bad I make my symptoms. I was pretty close to being able to reproduce the symptom that stops me in my tracks, but d itchy white get there. I had many other symptoms going on as I ran which made me feel good. I hit cardiovascular failure before calf failure McGinley wanted the incline going up but I wanted the pace to increase... so we did a combo of both but I was gassed by 9 minutes. I felt pretty confident my symptoms were bad enough to show something but also I’m just tired of it all. I was also running at elevation and fasted (CTAs) which gave me a headache later. I'd do it again, though, but fortunately don’t have to. I hopped (literally) over to the MRI and as I lied in the machine I felt that numbing sensation that I get at rest, another sign that they were going to find something. When I left the MRI location the woman said "I can't give you the details, but just to put your mind at ease, we got a good study, here". Man, I really needed to hear that! Every step of the way I was given reassurance that this was going to work. I can’t tell you how good that felt at each stop.
The CTA and Famous MVP Flex
We drove to another building right around the corner for the second appointment. I was trying to hydrate after running until failure (God I'm so out of shape!) I hadn't eaten anything yet due to the fasting protocols for the CTA and now the test I'm most stressed about I'm already feeling shaky. Last time I got a CTA was horrible. I had to hold my breath when they scanned because they were checking my chest and organs for FMD. The contrast is very hot and the sudden change in body temperature made me feel light headed the first time but the combo of holding my breath made it worse! I felt like I wasn’t emotionally prepared for that the first time in Boston. They just.... did it.... no warning. In this case I was going to have the contrast injected twice and the women were super sweet, talked me through each part and again-reassured me every step of the way. I like the grittiness of Boston, but maybe not in every scenario! The first scan was at rest, and the second I was pressing and pulling against Dr. McGinleys MVP Flex. I have to say that after all the waiting, researching, and saving of money.... seeing the damn thing in person felt really cool. I was like "there it is!" ... probably similar to how people feel when they get to see the Lombardi Trophy (damn you Tom for throwing that thing! J/k) It's just a hunk of metal, but for me it was symbolic of this new checkpoint and why I’ve been fighting insurance for months.
Other people in the support group had CTA's done with flexion against a board or against a towel... but I really liked that this plate had a gauge to help me understand my output. While the contrast worked it's way into my system, I braced for that feeling of peeing my pants and then the light headedness as my body adjusted to the feeling... With all of that going on, I was afraid it would be hard to tell if you're still holding or pressing hard enough (I practiced with towels at home because I was so afraid I couldn't hold it hard enough or long enough to produce symptoms, and my practice sessions *without* the dye didn't give me much confidence) but the gauge gave me a target and made it kind of a fun game or thing to focus on. I had to keep it above 120 and at first I was like "oh, easy" as it shot up to 150, but my calves cramped and fatigued during the scan and at one point dropped to a 126 and I was like "Oh HELL NO! don't screw this up!" Thankfully the woman's voice told me I could relax just before that zapping pain would have probably occurred and there would have been no possible way for me to continue (likely a nerve thing) I felt more confident that this was going to be all worth it now... and instead of having to wait weeks or months for someone to review results, we headed over to the McGinley Clinic... Matt had bought me a breakfast burrito at some small cafe while I was in the MRI. He said it wasn't good, but I was so hungry that was the best burrito ever. I basically swallowed it whole on our very quick drive to the Clinic. I’m a super picky eater, but I have generally no food complaints (except for the airport on the way home.) I think I was very in the zone- singularly focused on the task at hand. I didn’t care about anything else.
For as long as I've been running, and for all the information I've absorbed about the sport in the last 20 years (and believe me, it's not a normal amount... so much running crammed in my brain!)... I still consider myself a student. I like the idea that I am continually learning as information continually evolves. I feel that way about my body too. When I had the CTA's done for the FMD, I didn't get to see them at all until I was passed off to another specialist and asked for them. Had I seen it from the start I wouldn't have spent so much time researching that diagnosis... I would have immediately been like "there's no way this is it, doc, even I can see that you’re reaching...". I just was told I had this thing and never actually got to see it. That was not the case here. After I checked in I was brought into a room with the nurse who I already met on Zoom. There was about a 50 inch TV projecting the images of my legs. The nurse, Jen checked my stats etc. and prepped me for Dr. McGinley. He came in and went over everything projected on the TV. He even let me video some of it... I really am glad I did because anytime I think I'm crazy or remember those really hard times where things didn't make sense I can look at that video and remind myself. Below I took a screen shot and circled my arteries and veins on my right and left leg. It's as if you are looking through them and they are wide open at this point in my leg. Below that is a video of Dr. McGinley scrolling through with my muscle contracted, and you can see that my arteries and vein both get squashed in various places. Left worse than the right which matched my description and experience exactly.
Truthfully I wish I asked for more! (and I probably will in the future!) haha! Anyway, I probably spent more time chatting with him than I needed. At this point I went to the webinar, listened to podcasts, and stalked his old patients on social media and on blogs. I knew what to expect... BUT I think it was nice to get actual face time with the doctor and I think my husband enjoyed it too because he really didn't know what I've been talking about for months. I'd explain it then I’d hear him absolutely butcher explaining it to someone else. I don't think it really clicked for him until he saw it and could ask questions himself. But how lucky am I that he trusted me and shelled out all our life savings for this procedure he knew very little about? My absolute biggest fear was finding nothing at all, and wasting family resources... but this part of the appointment not only confirmed that I've been struggling with this for a few years, but also confirmed that many of my symptoms that I've run through for a decade or more were probably a result of this as well and all those summers I called myself "lazy" for not training most likely preserved me this long. Dr. McGinley mentioned that receiving the treatment at an older age (late 20's and beyond) has a better success rate due to something about collagen that I didn't feel the need to understand- information overload (at the time-now I want it explained again!)- I just liked my chances.
Masks definitely weren't a requirement in Wyoming. Coming from Massachusetts, we've gotten used to it, so we wore them everywhere but I definitely got some glances at gas stations and such. We did the whole consult with masks, but eventually I brought the topic up because I didn't want Dr. McGinley to have his Augmented Reality thing fog up or something because he had a mask on. I just said something along the lines of "I'm vaccinated if it's easier to treat me without a mask" and then the nurse and McGinley said they were too. Matt also had both shots (though he still is in his wait period) so we were within CDC guidelines to not have masks on... and man, as compliant and as patient as I've been with all the Covid things... I sure can't wait to have this behind us, and this felt like a small Covid Victory!
The treatment room was literally right next to the room we did our consult in. Dr. McGinley explained to Matt what his Augmented Reality headset was. He told a story about it that I already heard on a podcast (obviously), but essentially the headset allows him to see the ultrasound right in front of him instead of having to awkwardly turn his head to see the screen. He could also see through it as well. Not exactly Superman vision, but getting closer! He first injected lidocaine into my legs and then proceeded with the Botox. It hurt about as much as dry needling. Honestly I've had so many things done to my calves in the last several years... it all hurts... I just don't care. Prior to learning about the McGinley method, looking at open wounds of fasciotomies actually brought me relief... like ... "That's what I need! Cut me open doc!" But now, thanks to Dr. McGinley, I know better and have a much better understanding of the feeling of pressure than I ever had before. Essentially when the muscles block the vein blood can not travel back up your legs at the same rate it is traveling down so it creates a pressure imbalance. The vein requires less force to compress so this is what tends to happen first. The Artery requires more pressure to compress, but once you are doing that you are now depriving the muscles of all the oxygen and nutrients they need... and that's essentially where I am (hopefully was) at. It's also likely that there is some nerve involved with mine due to the "shooting pain" symptoms I have, but that could not be verified. The treatment should take care of all of it, regardless. Over seas and in some other places botox is being used for this, however Dr. McGinley patented his precise procedure. Other doctors are just haphazardly using the botox to get the muscle to relax while Dr. McGinleys goal is to target a very precise strand of muscle and freeze it or block it from contracting. Then, over time, the remaining muscles should retrain and take on the load of the “frozen” muscle until it is just not needed, atrophies and stops being problematic. The treatment didn't take long, and when I got up it felt really promising. It was just the lidocaine, but surely it was in the right spot!
Post Procedure we walked around town and grabbed food. I got a Steak (which I don't typically eat) and it was the best damn steak I ever had in my life. To be honest, I was really sore though. The running on the treadmill until failure has had some lingering pain, and the injection sites are bruised. But that was the last day I could sign up for the Boston Marathon and this wouldn’t be the first time I’ve signed up without being able to walk. This time I had permission and reassurance that I could do that... So I did! How is this still possible!? (Last I blogged regularly was leading up to my BQ... Over a year ago!) Now that we are home I'm kind of an emotional train wreck. It takes a few weeks for the botox to really set in. I'm going through phases of crying that this could actually work and realizing I might not actually know what it's like to run without pain... to absolute fear that I'm going to lose this feeling of hope. I'm still limping a bit, and I know there's supposed to be this phase of adjusting when new muscle patterns form... so it's probably normal but I'm a bit freaked out that I’m going to screw it up somehow and anxious for my follow up. BUT regardless of those occasional bad thoughts... Everything I've read about this method and about Dr. McGinley has me confident I made the right choice. He has his nurse following up with and check in on patients as they expect to need 2-3 treatments including the first. It is clear he and the whole team are committed; if things don't work for me this time I can get follow ups until it does... and I intend to. RIP house projects! Oh, and Happy 7th Anniversary, Matt. You for sure were the right choice, not every man lets their wife spend THIS MUCH MONEY on Botox! You’re the best! I’d rather have a young feeling body than a young looking face. Botox is the key to my youth!! And I’m lucky to have this second chance!
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.