Last I posted, I was in a really dark place... and I'm still there in many ways, but making sense of it and trying to pick up the remaining pieces of my life. I really thought this would work for me, and maybe it will, but the timeline is not easy to absorb and the inconvenience of the trip to Wyoming, as well as the cost makes it hard to continue to be honest. I almost feel like I should just be happy with the little improvements I have, and just quit. But I don't know how to quit so here we are.
On July 10th I was hit with the worst reality I could imagine for this diagnosis. I had been treated TWICE with botox, I saw that it was working, my arteries and veins were clearly open... and even still... SHARP, SHOOTING PAIN... which, in my mind, could only mean one thing; Nerve damage. Something must be wrong with my nerve. I will say that when I ran on July 10th I could feel the numbness of my calf. I could feel the botox "protecting" me... but even still I felt this zap of lightning that I knew all too well. There's no doubt in my mind that the botox is effectively treating the shin pain and the general fatigue I had normalized and learned to live with since I didn't know any better... But this particular zapping pain is what has plagued me and kept me from running. When viewing my scans the first time I asked about the nerves because the pain I experienced felt extremely nerve-like, and Dr. McGinley told me that there was a possibility that there was nerve entrapment but the CT could not pick that up. He assured me the botox would un-entrap it since the arteries and veins and nerves all follow the same pathway behind the knee. What we didn't have a conversation about is what if he un-entraps it and it doesn't matter? What if I've been crushing my nerves so badly for so long that they are just... fried? Like when you put a heavy coffee table on a plush rug for a long time. Those spots where the legs once were will never be the same!? It feels like my nerves are some sort of memory foam that takes a long time to... go back to being full.... Like they think they are still crushed! Will it ever be normal? I had emailed the Nurse in Wyoming about my concerns.
The Nurse Jen got back to me on the Monday after the "episode" and gave me a few options.
Option 1: Wait at least a full month before ruling out that it's working. The botox can take some time... but that option doesn't totally work for me because once this happens with my calf, it's going to happen more easily the next time unless I don't poke the bear for several weeks, which I don't really have that kind of time. So another week or two of rest wont give me any really much indication of anything. I also feel pretty confident the botox is working. Like I said I could feel subtle differences. I also am not sure if I can emotionally handle running again and having this happen… this has been SO hard.... I know it seems like it's just about running, but a) this issue is going well beyond running since I'm pretty much sedentary and way too young to just not move... and b) a lot of what makes me feel so depressed is deep seeded guilt about the expenses that we have been accruing and I feel this immense pressure to make it all worth it and every time I fail I feel like I can't breathe ... so less opportunities to fail isn't a bad thing.... (although on the flip side, sometimes failing is good because it confirms I'm not making this up even though I have insurmountable evidence at this point that it is not in my head... I still sometimes feel that way).
Option 2: Get an EMG and have my nerves assessed. Depending on the results I could then potentially get a hydrodissection where fluid or a steroid is injected around the nerves to help calm them down a little. I have to figure out who to see for the EMG, but the earliest I can get one with my insurance is OCTOBER 4th!!! BUT I'm going to look out of network and see if I can find someone. Ya know, I only met my PCP once and he said something about runners that bothered me so I never really quite warmed up to him and avoid seeing him at all costs (In hindsight, he was probably right about what he said, I wont get into it here but... ha... I judged him wrong). Even though I didn't particularly like him, I kept him as a PCP because he always writes referrals without much hesitation. Never in my life did I realize how important that would be for me! He's literally just ordering what McGinley says I need and it's nice to have that level of trust. I would hate to have to come in and explain myself and prove that I need certain things every single time. I also now know every secretary by first name, and don't even have to give my name and birthday when I call anymore. Even with that level of support, it's still a battle because if McGinley orders something it wont be covered by my insurance... so it's this whole ordeal and nice that my PCP will work with myself and McGinley on this. It's also nice that I can get the testing for that done here and have it sent over to McGinleys office and then decide what to do based on results... I just wish the wait wasn't so long. All of this seems like something McGinley does often and knows how to handle, but the problem is I wasn't prepared for this emotionally or financially. It wasn't in the webinar so I didn't have time to absorb that this could be part of the process so I just keep thinking something is totally wrong and that this isn't going to work for me and I'm going to be part of his small percentage of people that don't have success. I'm just super negative about it all in general. But at least I'm not totally at a dead end yet.
Option 3: More Botox. Which I’d have to wait for anyway since I'm maxed out for a few months…. And I’m not really sure it would help unless I’m scanned in some different position. Maybe we’re missing something…. (Dorsiflexion)... But I do think McGinley has more tools in his toolbox than most people here... and I'd be totally willing to fly more often if it wasn't so pricey! The cost of flying has increased a lot after the peak of the pandemic... they are even starting to charge for carry-ons now, I hear (unless you have a medical reason. I have an epipen so not sure that counts! I haven't had to pay for a carry on yet)... and until my kids are vaccinated this Delta Variant has me stressed. For anyone reading this years after the Covid Pandemic, I hope we've finally reached heard immunity through vaccination and not through death and exposure. There's endless stress about the best thing to do for my children.... The stress of flying and potentially bringing the virus home to my kids is no fun! And then the added stress about how divided people are on this... It's hard to trust strangers. I find myself looking wondering if they are vaccinated or not, and just feeling like i need to have my guard up at all times.
Option 4: (I added this myself) Figure out another plan I haven’t explored yet.
Option 4 it is, at least until Option 2 is available to me.
I realize that my mental health is so so bad right now. The worst it's been. The pandemic and being in such a divisive world is stressful enough, then add all this other shit. I realized I need to not put all my eggs in one basket. I've been putting some things on hold because we're just spending so much to get my legs fixed that I feel badly spending money on anything else. But I have to do other things that bring me joy. I started first with contacting people for therapy.... however that is super backed up so unless I'm legitimately suicidal, I'm going to have to wait. In the meantime, I started just trying to just pick up pieces of my life. I've rock climbed a few times since I was mostly asymptomatic with that activity. (I didn't climb very well because my calf is still sore and my hands have lost their callouses, but it was a good reminder that I still have things I enjoy). I went to a running event with the kids and with my husband, which was a bit painful because I couldn't participate in it, but I love this sport and still got a thrill watching my husband, race a bunch of high schoolers. I've been trying to get into the habit of waking up and facing the sun for 10 minutes first thing in the morning instead of getting up and relocating to the couch and scrolling social media. I’m going to try and build on that with walking… maybe I’m pathetic that I can’t get into a workout routine, but again, I go through bouts of pretty deep unhappiness… so the pressure of working out everyday just doesn’t help me. I'm likely to stay in bed if working out feels insurmountable. I’m trying to choose sustainable activities, so deep breaths, sitting outside, and making a few healthier food choices are where I’m starting. This morning routine has actually helped clear my head quite a bit and start me off right. There’s scientific research that your eyes need a certain about of light hitting the Neurons to really start the biological clock, and so my hope was creating this habit would change my brain chemistry and get me able to do more. It’s (anecdotally) working!
I've done laundry, made phone calls, cooked and done a few other things that I'd normally not feel motivated to do when I'm this upset... so I have to give the morning light some credit... It also dawned on me to try out the Alter-G. I have thought about this for a while, but since the pandemic was raging I tried to stay out of indoor enclosed spaces... Especially where there are lots of elderly that really needed to be there, like this particular PT location. But anyway, Now I'm vaccinated and Massachusetts has 100% of elderly vaccinated (minus my stubborn 93 year old grandmother, but, basically less than .5% of elderly are not vaccinated) so I got up the courage to try out the alter G and IT WORKED! At least this first session! Historically, my first "run" goes well, but I did 30 whole consecutive minutes! That's more than I've done in 2 years! My brain felt so much better after! I'm going to go back on Monday and see if I can get in a regular 3 days a week routine. It will cost me about $130 a month so if I get rid of my gym membership that I haven't used since the pandemic started, that will be almost the same. If the botox is truly working and if my nerves just need time to heal, this could at least help me start building new muscle patterns so that I'm actually atrophying the muscles frozen by botox. Part of the whole process is to use your legs after getting the botox so you can build new muscle and atrophy the "bad" muscle. I only ran with 20% of my body weight, and I do eventually want to see where my threshold is, but for now I'm just going to stick with what worked and repeat it as many times as I can.
Hopefully next update I can post that the Alter-G has been consistently allowing me to run without symptoms! Stay tuned.
McGinley Method: Touch-Up Update
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.