One Year Later

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Hours after surgery: I remember waking up with a drain in my leg, tons of IV’s, an arterial line in my wrist, an oxygen tube, cardiac leads, a pain pump I could press for Dilaudid, and a catheter. That’s a lot of tubes!!!!

It’s been a little over one year since I had the first surgery for popliteal artery entrapment syndrome. That was on October 13th, 2017 – I remember because it was on Friday the 13th. To me it was a lucky day, though, because it meant I could finally start on my road to recovery.

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Jenga, the super friendly dog at our AirBnb. She kept us company before we went to the hospital.

I specifically remember telling my mom after waking up from surgery, “This is the easy part.” To most people that probably sounds ridiculous, but I still stand by that. Even with all of the pain, nausea, shots of heparin, blood clots, hematoma, the incision ripping open, months of wound cleaning/healing, anemia, physical therapy, and having to go back for a second surgery it was STILL easier than what I went through before that.

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My mom stayed with me in the little fold out chair for the first few nights after surgery. Thanks, mom!

Trying to search for answers when in a matter of a week I went from marathon training to not being able to run at all was so baffling and frustrating. Waiting for doctor’s appointments, referrals, and different tests was painfully slow. All the while I kept questioning myself as to whether or not this pain was real. It was so strange that the symptoms came on so suddenly, the compartment testing was normal, the MRI was normal, and how no amount of rest or massage could help my calves. I kept questioning whether or not I was making it all up.

Then 6 months later to finally find out that it was PAES was terrifying. Being told by my doctor that he didn’t know what to do because surgery didn’t seem like a possible option was even more devastating.

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A day or so after the surgery. If you really look you will notice how there’s a line across my forehead and a patch on my chin where the skin is irritated. Not sure if it was an allergic reaction to the tape in the OR or what??? My mom tells me I was more upset about this than the actual surgery, haha!

I’m so thankful to be where I am now. I’m not in chronic pain anymore doing simple everyday tasks. I can bike and hike and run (a little).  I’m thankful to have found an answer and also have found amazing care at the University of Maryland Medical Center. I’m thankful to be able to be back studying physical therapy at a school that I love (UVM).

Today in class I heard the expression, “When you hear hoofbeats, think of horses not zebras.” In other words, when thinking about a possible diagnosis, think of the most common problems, not the rare diagnosis. I couldn’t help but laugh to myself as my case is definitely a zebra, not a horse.

Thanks for following along on this bumpy journey! Below are some pictures from our recent trip to Alaska.

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My first big bike trip in years. My dad and I biked the 92.5 miles of the Park Road in Denali National Park. There are no private vehicles after mile 15, and the rest of the road is unpaved. We split the distance up into a few days and in total biked 5 mountain passes!!! My legs held up great. Not bad for less than a year post op!

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Kayaking in Seward

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Around Denali they call bikers “meals on wheels.” Couldn’t resist getting shirts

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Denali: also known as “the great one”

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My Medical Imaging

Hey there! Over the past few weeks I’ve been requesting my medical records because I was curious about what the imaging looked like, plus I thought it’d be fun to share with all of you. Turns out that it was pretty interesting!

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My right leg pre-surgery in a resting position: You can see how the main artery going down all of a sudden stops (blue arrow). All of the cork-screw looking things are the collateral arteries (red arrow) that my body grew. Since I’ve had compromised blood flow in my legs for a long time, my body tried to compensate by making other pathways for the blood to get down my legs. My body is pretty smart, huh?

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Let’s compare my right and left legs pre-surgery in a resting position: My right leg is on the left and the left leg is on the right. Now it’s easier to appreciate how many collateral arteries my body really grew. The left leg, although not normal, has better blood flow. Therefore, it doesn’t have as many extra pathways as the right leg (less cork-screw looking things).

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The arteries in my left leg pre-surgery: The one on the left is when my foot is in neutral (at rest). The one on the right is when my foot is plantarflexed (like pushing down on a gas pedal). See the kink that happens in the image on the right? That’s because my artery was embedded in my muscle and when my muscle flexed the artery became squashed.

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This is a side-view of my knee post-surgery. See the bright white patch towards the back of my leg (blue arrow)? That’s the hematoma I developed after surgery. It was pretty big…

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Another side-view of my leg after surgery: See how the artery is going down but all of a sudden tapers off (blue arrow)? That’s where the blockage is. Then the other vessel going around (red arrow) is the bypass. It’s nice and wide open. Even with the hematoma I developed, the bypass still worked. All of the small white dots are metal clips in my leg to hold the bypass in place.

 

Overall I’ve been doing really good. I’m in my second semester of grad school at UVM and my life is going smoothly for the first time in awhile. I’ve been enjoying biking and hiking and I even go to the gym a few times a week now. I tried slowly getting back into running, but found it just too frustrating. My right calf would start cramping or my foot would start tingling. I tried taking more days off in between my runs, running on softer surfaces, running for shorter periods, massaging my calves more, and running even slower, but after a few minutes I’d be in pain. JoyRunner wasn’t too joyous about running anymore.

For right now I’m taking a break from trying to run. I think my legs needed a break and my mental health needed a break from the frustration. And in all honesty, I’m fine with that right now. I really do love biking and hiking and I even started liking going to the gym (a first for me). Maybe it’s because I wasn’t able to be active in any way for so long that makes me okay with that. I will try running again in the future, but this is what I need for right now.

Living Life

It’s been awhile since I wrote a post on here, but it’s not because of anything bad. I’ve just been living my life, enjoying myself, and not dealing with many medical problems.

I just moved back to Vermont where I’m studying physical therapy at UVM. It’s hard to put into words just how great it feels to be back home, which is what it feels like. I missed the people, the mountains, my school, etc. It’s been fun rediscovering my old running routes.

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Mount Mansfield

I had another post op appointment with my doctor in Maryland. The bypass looks good. It’s working just like it’s supposed to. Plus, I had some tests done to see if I’m more at risk than other people for developing blood clots after that fun experience of getting a DVT. Luckily, I’m not! I didn’t test positive for Factor V Leiden or any of the other things that were tested. Yay! No more aspirin for me, which means I won’t be bruising as much.

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No more aspirin! Which means a lot less of these bruises.

I was cleared to start running 3 months post op, and I’ve been very gradually increasing how long I go for. The farthest I’ve run so far is 30 minutes with a mix of running for around 4/5 minutes and walking for 1 minute. I’ve been going on lots of small hikes and am back biking. The farthest I’ve biked has been around 15 miles.

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Sam loves taking a dip in the pond when we hike

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seen on a walk with Sam

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With that being said, there’s definitely been a learning curve to it all. I’ve had to relearn what my body can handle, what it needs, and what its recovery looks like. I’ve had the vasculature in my legs restructured, some muscle removed, and the nerves fixed in place. My body is different than what it used to be. Plus, it’s still in the process of recovering from surgery. I’m only 4 and 8 months post op from two major surgeries.

I’ve learned that at least for now I can’t run back to back days. Grass and trails are much easier on my legs than pavement. My balance kind of sucks now. I can’t sit cross-legged anymore or else my leg will fall asleep. I’ve also learned the signs that I need to slow down or take a break – my calves will start burning, or my toes will start tingling, or my foot will start falling asleep. If I just stop for a few minutes, though, the symptoms completely disappear.

I don’t know what the future looks like for my running and I don’t really want to put any limits on it for the moment. I will most likely not be running marathons in the future. My surgeons have both told me that that wouldn’t be the best idea. The stress that would put on my calves might cause the bypass to clot up and I don’t want to go through another surgery anytime soon. I’m not sure I’ll be able to really run races again. At the moment, I’m just satisfied with what I can do right now. When I was diagnosed about a year ago I was so extremely limited with just about everything. Walking just a short ways was painful even at a slow pace. The fact that I can now run and hike and bike is pretty incredible. I’m so thankful to have my life back.

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taken during my bike out to the Causeway last week

5 Weeks Post Op

To sum up the recovery from this second surgery, I would call it a piece of cake. That’s in comparison to the first one at least. I didn’t have any complications afterwards and the recovery is going very smoothly. I keep thinking, “Maybe this is what surgery is supposed to be like.” I kept checking on the incision site after this surgery expecting it to spontaneously gape open like it did before, but all is good.

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The incision at 3 weeks post op. Look how nice and thin it looks!

I found a photo that I took the night before my bypass surgery. I wasn’t sure what they were going to look like after all was said and done. I’ve got some interesting matching scars now.

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For those of you that don’t know, I developed a hematoma after my fasciotomy 8 years ago. Then after the bypass surgery I developed blood clots, which meant I had to take blood thinners, which then caused a huge hematoma to form, and so much pressure built up from the bleeding that the incision ripped open. That delayed my recovery by a few months. I’m so thankful to finally have a surgery go smoothly.

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the lovely hematoma I developed from the fasciotomy I had in 2010.

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I’m not going to post a picture of the incision that opened up, but here’s a picture I took the morning after the bypass. It was very painful, red, swollen, and I ended up finding out I had some blood clots that morning.

I was off crutches pretty quickly – I think within about 2 weeks I wasn’t using them anymore. I’ve been enjoying being able to go for walks, use the elliptical a little, and the stationary bike. I’m not allowed to do any resistance training until 6 weeks post op, and no running until 3 months post op.

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My friend Ellie and I went exploring at a state park near where she lives.

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I keep having to remind myself to take it easy and not overdo things. It’s difficult because my leg is already feeling so good, but I know it’s still healing. There’s no benefit to rushing recovery, so I’m doing my best to take it slowly.

I had my post op appointment in Baltimore where I saw both of my surgeons. They said that everything looks good, and I’m recovering smoothly. My vascular surgeon wanted me to get checked for Factor V Leiden, which is a blood clotting disorder. Since I have a family history of blood clots and developed one after the bypass surgery he thought it would be a good idea to check just to be safe. Hopefully I’ll be getting those results back soon. He also told me that they filmed my surgery and want to put it up on YouTube along with an interview, which I’m really excited about. I can’t wait to see what the inside of my leg looks like!!!!

 

Post Op Leg #2

I’m home! I had surgery on Monday, February 12th and things seem to be going a lot smoother this time around.

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DISCLAIMER: Don’t scroll to the bottom of the page if you don’t want to see photos from the surgery.

For those of you that don’t know, this surgery was a little different than the one I had on my other leg. My left popliteal artery was being compressed whenever I went into plantarflexion. Luckily, it wasn’t damaged enough to require a bypass like the right one. The artery just needed to be freed up a bit from the surrounding muscle.

It’s difficult to tell exactly what is compressing the artery from imaging alone. The only way to know exactly what’s going on is when the surgery is actually performed. When they opened me up they found that the artery ran a slightly different path than it was supposed to – more medially. Plus, it was embedded in the medial head of the gastrocnemius (calf muscle) and was being pushed up against the tibia when I would move. Basically, it was being repeatedly crushed. My doctors said it was probably only a matter of time before that artery occluded like the right one.

There are various types of popliteal artery entrapment syndrome. I was told that my anatomy was a mix between Type 1 and Type 2, but mostly looked like Type 2.

paes 4paes 3My doctors took out the piece of muscle that was overlaying the artery. Hopefully now since the artery isn’t impinged by the muscle the blood flow will return to normal, and my calf pain will go away. Fingers crossed! There’s a picture at the bottom of this post that was taken during the surgery. My doctors were nice enough to take a picture for me of my leg before they closed it up and the muscle that was removed.

The surgery lasted 2-3 hours and everything went smoothly. However, waking up from anesthesia went a little bit differently and I’m still kind of confused about what happened exactly. The first thing I remember when I was coming to was someone saying, “Laurel, you’re just waking up from surgery. Everything went fine, but you need to stop moving. You’re gonna hurt yourself.” I was completely disoriented, but after peeping my eyes open and seeing the bright lights I pieced together that I was in the OR. Someone else asked, “Laurel, what’s wrong?” to which I didn’t really have an answer besides needing to cough after having the breathing tube in. Finally, I heard, “Okay, everybody stop touching her. Just let her be. Laurel, do me a favor and take some deep breaths.” I think at that point I finally started calming down. From what? I have no idea.

I then heard the staff talking about how younger people sometimes wake up really agitated, but that they don’t see it very often because most people having surgery are older than me. It’s called emergence delirium and happens mostly to kids, but it can happen to adults as well. To my horror, they discussed how I apparently kicked someone during the whole ordeal, which I have no memory of. I am so sorry to whoever that was! So embarrassing. I really wish I knew what the whole scene looked like because I can only remember bits and pieces.

The rest of my recovery was a lot less exciting luckily. This time around I have to wear a big knee immobilizer, which is pretty annoying. I’m constantly overheating from it. It’ll help keep my leg straight, though, which is good. They put a wrap around my other leg that inflated and deflated periodically. It’s supposed to help prevent blood clots. I spent most of my time in the hospital on the vascular floor. It was fun getting to see the nurses again, many of whom remembered me.

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the knee immbolizer

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helps to prevent blood clots

The fun part about this surgery was that I got to meet another person with popliteal artery entrapment syndrome! I had found a support group on facebook for people with PAES months ago, which has been extremely helpful. Another girl and I realized that we were having surgery on the same day, both at the University of Maryland Medical Center, and with the same doctors What were the chances of that!?

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The nurses called us the twins – same surgery on the same leg with matching gowns, knee immobilizers, drains, and crutches

This surgery involved both an orthopedics and vascular surgeon working together, which meant that it took a little longer to get a surgery date that both of them were available on. My guess is that they coordinated things so that they did two PAES surgeries on the same day.

This syndrome is very rare, and I know my doctor, who does more of these surgeries than most vascular surgeons, only does a few of these surgeries a year. The fact that both of us were having the surgery on the same day was pretty cool!

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we crutched our way over to look out the window

We were messaging each other the weekend before the surgery. We also ended up being roommates in the hospital, which made things a lot more fun than last time. If the Internet didn’t exist then I wouldn’t know anybody else that has PAES. It was so nice getting to talk to someone else that really “got it” and knew what I was going through.

I’m back home now and things are going smoothly. No blood clots, so I don’t have to be on blood thinners. At the moment, most of the pain is coming from my back, not my leg. Trying to find a comfortable position at night is extremely difficult. The knee immobilizer keeps my legs straight, and my back is NOT happy about that. I’m not used to sleeping with my legs straight! The incision is healing nicely. Fingers crossed everything keeps going smoothly!

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the muscle that was taken out during the surgery (part of the medial head of the gastrocnemius)

Gearing up for Surgery #2

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my favorite park to walk at

Surgery on my left leg really snuck up on me. February 12th seemed like such a long ways away, but now it’s in just a week! I’m looking forward to just getting it all behind me and moving on with my life. It feels like I’ve been in limbo this past year. I’ve had to put my life on pause to deal with my medical problems. The past few months have just been full of medical appointments, making various calls to health care providers, and recovering from surgery. I need to be done with all this medical stuff and get my life back.

My nerves are definitely worse this time around compared to my last surgery. I think it’s better to be naïve and not know what to expect. This time I remember how much pain I was in after the first surgery, I remember feeling nauseous for days from the pain meds, and I remember all the complications I had to deal with afterward. The good news is that I learned some ways from my first surgery to make this time easier.

1. No Dilaudid because I’m apparently allergic. I would really rather not be up all night scratching my body because I was so itchy like last time.

2. I need a different tape than the one they used in the OR for the first surgery. I ended up with big red welts on my chin and forehead that lasted about a week.

Luckily, this surgery isn’t supposed to be as intense as my last one. I’ll be having a muscle release instead of a bypass because my left popliteal artery isn’t ruined yet. They’ll basically free up the artery by shaving away some of the muscle that’s compressing it. In all honestly it sounds more barbaric than the bypass surgery, but my surgeon said the recovery will be a little easier. Hopefully I won’t have to stay in the hospital for quite as long and the surgery itself should be shorter. Last time my mom said I was back there for 7 hours!

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The scar on my right leg has healed up pretty nicely.

I’ve been making progress with my right leg recovery. I went for my first run since surgery on January 5th! It felt a little awkward running, which is probably because I literally hadn’t run in a year. Plus, when I used to run it was almost never on a treadmill, so I felt a little uncoordinated. With that being said, it’s amazing to be back to doing what I love most. I begged my physical therapist to let me run before the next surgery even if it was just for a minute. I just wanted to know that I could still do it.

The other day I was trying to remember what my last run had been before surgery, and I reasoned that it had to be when I had the compartment testing last January. That was definitely not a pleasant run. First they measure the pressures in the four compartments of the lower leg with a giant needle. They somehow managed to hit a nerve during the process, which is one of the most painful things I’ve ever experienced. I involuntarily jerked my leg and let out a scream. After that I ran on the treadmill until my calf felt like it was on fire and my foot was completely numb. Then they get to measure the compartment pressures again. So in comparison, my first run since surgery was 100x better than the run when I had the compartment testing!

It’s pretty slow going with the recovery. I’ve only managed to get up to 15 minutes with 3-minute run intervals, followed by a 1-minute walk interval every other day. I have to keep reminding myself that I had major surgery, and it’s not going to be as easy as recovering from compartment syndrome surgery. Plus, there were definitely some complications after this surgery, which slowed things down. Luckily, I’m enjoying doing other activities like biking and hiking. I’m also working on strengthening my core and my right leg, which will be doing most of the weight bearing after this next surgery.

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me, Ned, and Samson have loved getting some hikes in

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Sam somehow grew an icicle beard on our walk

I’m not sure if I’ll be posting again before the surgery. If not, I’ll see you on the other side! Fingers crossed everything goes smoothly.

Reflecting on 2017

This past year has by far been the most difficult year of my life. It’s been over a year since I’ve been able to run and began this wild goose chase to figure out what was wrong with my leg. I went from marathon running to being in chronic pain just doing the simplest of activities.

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Santi and me before the Manchester Road Race in November 2016.

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Ellie and I after the Cambridge Half Marathon in November 2016

I started graduate school last summer still not having any idea what was going on with my leg. All I knew was that I was in constant pain. I was in pain walking to and from the train station, I was in pain standing up for hours in the cadaver lab, I was in pain just walking up the stairs to get to class. I remember telling my mom that I couldn’t make it through another semester like this. I was absolutely miserable.

It was pretty shocking to find out in the middle of the semester that I had a rare medical problem causing my right popliteal artery to become completely blocked and my left one to become problematic as well. Then it was just icing on the cake to be told by my doctor during finals week that he didn’t know what to do. The ultrasound showed that I had small veins, which wouldn’t be great to use for a bypass. Granted to say, I had to leave school to find some answers.

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That’s some pretty crappy circulation

I’m now so thankful for what I used to take for granted. I’m thankful that my foot isn’t numb after walking up a few flights of stairs. I’m thankful that I don’t have to grit my teeth while I’m driving because I’m in so much pain from pushing on the pedals. I’m thankful that I can go hiking and walking outside again. I’m thankful that I’m able to use the elliptical, and will hopefully begin running soon. I’m thankful that the first surgery was successful even though there were some complications. I’m beyond thankful to just have some answers and a clear course of treatment.

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This is what the incision looks like now. Not too bad after gaping open a few weeks before.

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Samson and I love going to this park.

I’ve got the next surgery date scheduled; February 12th! I’m looking forward to just getting it done, so that I can get back to my normal life. 2018 has to be better than 2017, right!? It feels like my life has been flipped upside down this past year. I learned that life doesn’t always go as planned and that some things are just out of my control.

In 2018 I want to get back to running. Even if that means just running a few miles a day instead of marathon training I’ll be happy. I want to do more backpacking and bike touring adventures. I miss that just as much as I miss running. I want to get back to school to become a physical therapist.

Most of all, I just want to be happy.

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Feeling happy standing on the Continental Divide during our 2015 bike tour.

Good riddance, 2017! And here’s to a good 2018!

Here are two videos I made from trips I took in 2016. I hiked the Long Trail and bike toured in Alaska. Hopefully there’s more times like this to come in 2018!