Week 3: Post Op and DVT

Well the rosy recovery I feel like I’ve been having took a sharp and unpleasant turn into DVT town.  At 20 days I had my second post op appointment.  I was SO EXCITED to get into a boot and honestly I still am but it did come with some bad news.  Ever since my surgery I had been having some slight calf cramping.  I did mention it to my doctor and he briefly touched my calf and said he thought I was ok and didn’t need to worry about blood clots.  I didn’t have any of the risk factors and was staying well hydrated and moving as much as felt doable while still trying to elevate a lot.  In the days before my second post op the cramping got stronger, maybe a four on the pain scale.  I thought it was from calf atrophy.  It’s pretty hard to know what is going on beneath your cast, but even if I could have seen it, I didn’t have any of the other symptoms.  My calf wasn’t hot or red or swollen.

When I mentioned the cramps to my nurse she said “you really need to be sure to tell the doctor about that” so I did.  He immediately sharpened focus and said “how would you like to get an ultrasound today?”.  I told him if he thought I should I would and he did.  Aside from all that which I will get to, my staples had stayed in a little too long (20 days) so they hurt SO BAD coming out and bled from scabbing.  I had to return to deep breathing.  I had at least 20 staples and the nurse did not offer breaks so that was an intense and bad experience.  I hugged the wall and just tried not to look.  The doctor did say I was healing really well, but the thought of my impending death by DVT made that hard to absorb (again, I am anxious lol).  I got permission to go to PT in a week and start partial weight bearing as advised.  They wrapped my foot in an ace bandage and mentioned compression socks but forgot to give me the info as I was whisked across the road to the hospital for my ultrasound.

My poor driver had not anticipated this kind of time commitment so I sent her home and called my mother to switch out (she is an angel).  The ultrasound was rough on me emotionally.  I was still in shock because I never thought I would really get a DVT at 32.  I still kind of didn’t.  I also hadn’t brought my wheelchair and was crutching across an endless expanse of hallways.  Having never had an ultrasound before I had no idea what was going on and was mostly trying not to cry.  The tech (not sure of her position honestly) told me I would hear some weird sounds from the veins.  Everyone I’ve ever seen described this process as not painful but mine did hurt.  They press quite hard and in places that already hurt if you really do have blood clots.  You do get to listen to your veins pump blood and the bad leg was like a beating drum which seemed great until I heard the healthy leg which sounded like an insane bird trilling.  Call me crazy but it does seem the should match.

The tech went to speak with my Doctor and then came back and said I did have a DVT ( Deep Vein Thrombosis) and needed to go the ER.  That is all she told me and after I got outside I just cried it out.  Then I spent 4 hours waiting in the ER.  The ER is not a place you want to be for many reasons but especially with COVID right now.  Tons of people had their noses out of their masks and several were actively vomiting in front of us with (of course) no mask.  The chairs were not 6 feet apart.  I never saw any sanitizing between patient use of items.  At this point it is about 3PM and I have not eaten or had water that day.  My leg hurts quite a bit and I was considering honestly just leaving.  It seemed like they really might never admit me.

Eventually I was checked in to pediatrics because they were so busy.  They apologized and said I would recieve the same level of care.  I honestly was just happy to be seen at all and like the kids ward better anyway (I’m a children’s librarian).  The PA came in and perscribed me Xeralto at a speech rate that rivals Gilmore Girls.  When I got home I ordered Panera and almost fell asleep in my soup and for a day I was just in constant leg pain at about level 5.  I have a follow up appointment with my primary care doctor in 4 days to see how long I should stay on the blood thinners and hopefully learn more about my clot.  I do know that it is in a part of the leg that they are slightly less worried about breaking off.

It has been rough.

First Post Op: Also my birthday

At 10 days I went back for my first post-op appointment ON MY BIRTHDAY.  Obviously, I was really hoping to get in a boot but alas it was not to be.  My sutures were removed for my top of ankle bone spur but my staples needed another week.  It was really nice to see my leg again, haha, and to get a new cast.  My old one was rank from the dried blood.  I did wish they had cleaned my leg/ankle before rewrapping At first I was horrified to see it was green but it turns out that was just bruising.

My doctor thanked me for “making his job easy” which translates to no complications and good healing.  He cleared me to work part-time if I could stay non-weight-bearing (I’m going to take another week off just to be careful) and get my dog back so long as he isn’t a risk for knocking me down.  My family disagreed with this and wouldn’t give him back but brought him for a day trip.

I asked if I could switch to a boot after my staples came out and Doctor E confirmed that was the plan.  He also said at the next visit I would get the paperwork to start setting up physical therapy (so exciting!).  I’m still going to be NWB for 4-5 weeks but the idea of washing my leg is a siren’s song to me.  He assured me that the pins and needles I sometimes have are normal as are the purple toes I sometimes get when I have my leg down.  This will apparently continue for a few months.  I requested a handicap placard and asked for a signed doctor’s note for this at the visit.

I was offered a choice of a splint or a cast and when I asked the difference he said a cast would be better.  I don’t hate my cast anymore.  It really is protective and I feel like I’m wearing armor.  If anything I’m too comfortable in it.  I’m not supposed to rest my foot on the floor but it seems unavoidable and doesn’t cause me any discomfort at all.

This visit wiped me out and I napped most of the rest of the day.  I can’t believe how tired I get, like being drugged.  I was pretty happy with my progress, though.   I do tend to think every twinge of pain is a blood clot (It isn’t) but aside from that, the recovery is just boring.  I comfort myself with a lot of Skyrim and books.

Week 1: Adaptation and Elevation

Week 1 was a challenge but was actually not as bad as I thought it would be.  My hip and knee started getting very sore from the weight of my cast but when I felt confident enough to crutch around with it behind me instead of stiffly held out front, that eased off.  I was drinking SO MUCH WATER.  I don’t know if that’s a side effect of the surgery but I think this is the only time in my life I actively craved it.  I had some throbbing and some aches.  The cast pulled on my sutures a little and my staples but at worst I think the pain was a 3.  The only really bad pain I had was some hypnic jerks at night where I felt like I was falling and would wake up to  a tensed ankle and similar to surgery level pain (5-6) for just a hot second.  It made me scared to sleep for the first few days but eventually went away.  I ended up sleeping with my leg not elevated (GASP) and it was fine.

I elevated all day every day aside from bathroom breaks.  I would have iced my leg but because I wasn’t given one at checkout I spaced it off for a while.  Luckily my swelling was basically nonexistent when my leg was elevated.  I did get kind of stiff and uncomfortable from being on the couch so often so I made sure I crutched around a little every few hours at least to the bathroom or kitchen.  I also switched to my bed once in a while for variety.  I also wiggles my toes all the time to make sure I could haha.

This may be too graphic for some readers, but going to the bathroom was and continued to be a challenge.  It was hard to wipe.  I’m not sure if that’s because I had one leg hovering, because I’m plus sized, or because of the toilet riser but I ended up getting a special stick (LMAO the indignity).  Until the stick came I was just taking a mini sponge bath after bathroom trips and using wet wipes to make sure I was actually clean.  Possibly a bidet would help? I even tried standing up but thats also dicey.

I also made sure to take a sponge bath every morning or evening.  The idea of not taking showers was pretty hard on me as an avid shower/bather.  They help with my anxiety so this was probably more important to me than many others.  I also hate having greasy hair and my hair is INTENSE.  It is long, course, and curly, and does not respond well to dry or foam shampoo.  I even went so far as to try shower caps but those are clearly made for those with thin, short hair.  I ended up wearing a lot of headbands as my hair isn’t quite long enough to put up, and pinning my bangs up.

I was weirdly chipper for the first week, mostly happy to have survived surgery and be mostly pain free.  The second night I felt like I was spinning from the pain pills so the next morning I switched to Tylenol and never looked back.  After day 4 I didn’t need even that, and only felt minor throbbing and pins and needles.  Day five BOOM DEPRESSION.  It only lasted a day haha, but the SADNESS.  When I woke up I couldn’t get off the bed.  I had been using my crutches to swing myself off of my bed and couch but it was hard.  Sometimes I would try but just fall back down.  That got old fast.

After a pity party I became productive and found some alternatives.  I slid down to the bench at the end of my bed and could stand from there.  On my couch I used the arm and back to lift myself up to the arm where I could stand on one leg from.  Sometimes anger really is a tool that helps you innovate.  My couch may never be the same haha.

Cooking was a no go.  I didn’t even try.  Pre-surgery I prepped some egg scrambles for a week’s worth of breakfasts and some frozen meals/sandwiches with lunch-meat.  This was my salvation.  Did I mention I live alone so I am mostly on my own in this regard though I have many wonderful friends who made me adorable gift boxes complete with coloring books and face masks galore.

Anyway, here are my favorite snacks :)

  • Cottage Cheese
  • Jello
  • Fruit  and granola yogurt parfaits
  • Tuna
  • Cheese
  • Bell peppers with ranch or hummus
  • Apples with peanut butter
  • Applesauce
  • Banana chips
  • White cheddar Cheetos
  • Juice boxes/water
  • Cherry tomatoes

I found a lot of independence in finding safe ways to do things I would normally do (dishes, sweeping my kitchen, food prep).  I did need help with a few things, however.  I can’t do my own laundry as mine is in my basement so I ended up prepping it all in a basket sorted and in delicate bag and had to hand that over to my mother.  I also couldn’t take the trash out but I got it bagged up and ready to go at the door.  I don’t like to ask for help but  sometimes you just have to.  I also accepted all offers of food delivery and had to have my mother bring my groceries in off the step.  She helped me reorganize my fridge shelves to make everything easy to access from the wheelchair.  I am so lucky.

The Surgery Day and Prep-Prepping my House

I experienced a lot of anxiety and dread before my surgery.  I was afraid to go under general anesthesia of the long recovery time.  it was pretty bad. I’m just relieved I was able to go through with it because it was touch and go. The day-of I checked in and reviewed my paperwork which had a fun surprise.  My doctor (Doctor E) had decided to remove my Os Trigonum bone ON THE DAY OF SURGERY!!  I’m a planner so this was impactful but surprisingly made me feel better.  I was worried that this surgery to remove my bone spurs would not completely solve the issue since so many doctors had mentioned the Os Trigonum bone and I would have to do it all over.  Doctor E agreed and said he could easily get to it with the tendon out of the way.

I had to do a urine sample on 13 hours of no water so that was fun but at least I got to wear my underwear into surgery.  The joke was on them because my underwear that day was higher than some high-wasted bikinis haha.   I was actually relieved when I got my IV, that’s how thirsty I was.  Then there were a few hours of downtown where I frantically read a book to distract myself.  At least I had a sweet space blanket to keep me toasty.

A nurse-led me into the surgery room where there were 4 other medical professionals, which was weirdly reassuring.  I got on the table and was out like a light.  I remember absolutely nothing past that point and it was such a relief.  Waking up was decidedly less pleasant.  There is a pretty significant amount of pain upon waking and shaking off the GA.  My tendon felt clenched and I could not unclench it and the pain was at least a 7 which is maybe the highest I’ve ever felt.  I immediately started to cry wordlessly and began deep breathing like I was in labor which seemed to help.  Once I got my glasses back on I could see I was hooked up to a blood pressure or heart monitor and it was HIGH.

The nurses assured me they were going to help me get it under control and when I was down to a 6 they asked if I thought I  could go home at that level of pain.  I was like “to die?” (can you tell I’m dramatic).   Actually, I stared in horror and just said ‘I guess”.  Luckily the pain gradually dropped to a 4 before I was discharged.    I was supposed to get an ice pack and some instructions but they just rolled me out to my car ( COVID times are crazy) and I was in no shape to ask questions.

The more time goes by the less I remember about the day-of but at the time I actually felt normal but chatty.  I didn’t seem to have impaired judgment or say anything weird according to witnesses. The nurses mentioned that I told them I felt great as soon as I woke and I can’t recall that.  There was a learning curve to moving around the house even though I had practiced several times all my daily activities.  Mostly I laid on the couch and went to the bathroom.  I didn’t feel sick at all and happily ate some applesauce and watched a movie.  My leg was in a hard cast which was extremely heavy but also protective.  I find it kind of cozy but I know some people do not!

I was given Oxycodone with Acetaminophen which I took every four hours.  The nurses told me not to let the pain get ahead of me for the first few days so I set a timer.  I started to have unpleasant sensations (not really pain) near the end of four hours so I did seem to need it. Previous to the surgery I bought some things to make my life easier.  Here is the list.

  • Wheelchair with side pouch (this what I mostly use because there is less fall-risk and I have bad knees and my left ankle is bad).
  • Knee Scooter with basket (just for work.  The turn radius is too tough to work well in my house)
  • Crutches with pads (I just used these to assist me for the first two weeks/to get to the bathroom which my wheelchair doesn’t fit in. )
  • Toilet riser (mine is so short)
  • Bath bench with transfer
  • A Grabber Stick
  • 2 leg elevation pillows (1 for couch and 1 for bed).
  • Capri sweatpants and men’s basketball shorts (I’m a woman but our shorts are inferior and we all know it)

I also pulled all my dishes out of the cabinets and onto the counter and turned my island counter into a snack bar with water and healthy food.  I laid out outfits on my window seat for a week (I really am a planner).  I put away things like makeup that I knew I wouldn’t need and made sure my paper towels and toilet paper were on lower shelves.  I made arrangements for my dog to stay with my parents for a few weeks (the hardest part).   I practiced ordering groceries from Instacart as well.

Betrayed by a Vacation (my origin story)

Two years ago I had the audacity to think I was capable of walking 6 miles and I have never been the same since.  I was walking in Philly wearing some high ankle boots and suddenly I could no longer stand.  One of my legs was just dragging. There was no twist or pop involved and I did not fall down. In normal circumstances, I would have gone to see a doctor but I was in a strange city and a freak snowstorm hit that night while I was icing/resting. I seemed to recover over the course of my vacation at least partially after purchasing an over the counter ankle wrap but I never got full strength back. I tried to slowly increase my activity but every time I would walk more than a few miles my leg would respond in the same manner. Due to work demands and a general fear of the diagnosis I knew I would get if I went to the doctor, I continued on this way for about a year (mistakes were made).

After a year of pain bouncing between a 2-4 level, I couldn’t take it anymore. I was running a big event at work and could barely walk and was in a ton of pain. I went to my primary care doctor (Doctor A) and she ordered an x-ray. I was diagnosed with an ankle sprain and some arthritis.  They also noted I have something called Os Trigonum syndrome which is an extra bone in your ankle that usually causes no issues but can get crunched like a nut in a nutcracker in rare circumstances. I was given crutches and RICE, as they did not believe my bone spur or extra bone was the issue… which did not work at all.

After a few months of no improvement, I was referred for an MRI and spoke with a podiatrist (Doctor B). This doctor recommended some very random surgery which I was not convinced I needed when I asked what next steps for me where.  He also said  “oh yeah, I guess you’re still young” when I wasn’t willing to limp around in pain forever. At the ripe old age of 31, it had never occurred to me that any doctor would imply I wouldn’t want to walk again or that I wasn’t a candidate for any kind of corrective procedures. Needless to say, he wasn’t my favorite. I wanted a second opinion so he referred me to a sports medicine specialist (Doctor C).

At this point, I began to feel the complete lack of communication in the medical community. None of my records were forwarded to this specialist and no one told me to request it.  Having never needed multiple doctors in my life I was utterly confused and had no idea which way was up anymore. This left me trying to explain to Doctor C what was going on (having little to no idea myself). Doctor C laughed when I told him Doctor B’s suggestion of surgery. I have never felt more concerned about my physical health and less reassured by a physician.  He did at least acknowledge that it was hard to know who to listen to when doctors disagreed.  Without ever seeing my files, he recommended physical therapy.

My physical therapist was delightful and while I didn’t ever see an improvement from my work with her, I think I can credit her with the recovery from my ankle sprain.  I was diligent in my exercises to the point where I would do them every morning and evening and often some on my lunch break.  Standing on my bad ankle never stopped hurting and I eventually found a routine that seemed to ease some of my symptoms.  I would have gone back to the doctor after a few months since my pain was still present but there was a horrific tragedy at my place of work in which a person lit themselves on fire and burned alive in front of us.  the consequence of this was that I was in no fit state of mind to do anything but try to get through the day and go to therapy for depression for several months.

Finally, I tried to get back into physical therapy but was told I needed to be referred by a doctor again.  In a fun twist, my primary care doctor had just retired so I found a new doctor who referred me to Doctor D, who was a physical medicine doctor.  He was by far my favorite physician at this point.  He took a lot of time diagnosing my issue as Os Trigonum syndrome and explained my options with a lot of compassion and kindness.  Unfortunately, he did not do surgeries so he referred me to Doctor E  who is a podiatrist and does surgery.

Doctor E took new x rays since it had now been over a year since my last one.  I had my left ankle x-rayed also because the same symptoms had begun there to a much smaller degree (I am not kidding you).  The new x rays showed my bone spur was much bigger and it was rubbing on my Achilles tendon.  I also had developed another small spur on the front of the ankle (joy), likely from all the continued inflammation.  Because I had tried everything conservative already Doctor E. recommended surgery.  They would have to cut my Achilles tendon to get to my largest spur and could do a keyhole surgery on the front one.   I mentioned my Os Trigonum bone and Doctor E did not think it was the source of my pain and did not want to remove it.  I said “ah, but while you’re already in the area maybe we should just take that thing out just in case, right?”.  He did not agree, haha.  There is apparently a heightened risk of nerve damage around the Os Trigonum.

Despite having surgery scheduled which I felt pretty sure was needed, I did not feel great about this visit.  I was scared I’d just be back again for another surgery after the long road back from Achilles tendon surgery to get my Os Trigonum out.  It is also just incredibly frustrating to hear from so many doctors and have so few agree on diagnosis/plan of action. I never really got an answer as to what caused all this damage to begin with aside from being overweight and apparently old (I’m 31).  But anyway, that’s how it all began 2 years ago.