AFO’s and Follow-Ups

Yesterday I had an appointment with my surgeon at the Frazier Rehab Institute in downtown Louisville. I was last there 2 weeks ago and screening was definitely stepped up.

Last time, there were nurses inside the entrance checking temps with an infrared thermometer, verifying who you had an appointment with, and giving you a label (which didn’t stick at all!) to show you had been checked in.

Today, it was the same, but a mask was given out when you came in the doors, and a more “official” label was applied to my shirt. Now, I appreciated the mask, but I’m not sure how they expected me to put it on since I my right hand isn’t working. And they couldn’t touch me either, so I did the best I could. Which basically meant getting the top ties knotted – not nearly tight enough to stay on my head – and letting the bottom strings just dangle. 🤷🏻‍♀️

When I got to the 12th floor, I checked it. I didn’t have to sign in, they didn’t want my copay (OOP is $300 from being met for the year 🎉), and they didn’t want me sitting in the chairs. Different but it was all very efficient! Granted there were no other patients waiting so that led to efficiency.

I told Dr. Shaw’s nurse, Lisa, about the mask not being secure on my face. She said she had ordered some off eBay and she’d give me one that had ear loops. I told her I didn’t want to take her personal supply if it wasn’t necessary. But she wanted to make sure I had a properly fitting mask.

Since I got my cast off I’ve had an issue with my toes. Before surgery, my big toe would stick up. Since surgery though it’s laying more flat but my other toes crunch downward. It’s even worse when I am standing or walking. My toes become a fist, which is incredibly painful and makes walking really challenging.

Dr. Shaw said when he does my arm surgery (date still TBD), he can release the toes too. He said releasing them will probably make them not able to move at all. Which they don’t move now anyway so it may not really matter.

He was talking about the screw he placed in my ankle during surgery. I’m sure I won’t describe it correctly, but he said whatever it’s made of will become bone after several months. This is why I have to wear the Ankle Foot Orthosis (AFO) for several months.

I have said before that I absolutely hate the AFO. I know it has purpose, but it’s so dang uncomfortable! The day I got my cast off and had to wear the AFO, as soon as I got home, I ordered 2 pair of new athletic shoes – one in a size 8 (my regular size) and a matching pair in a size 9. The bigger shoe fits my AFO better but didn’t help with the toe crunching.

Dr. Shaw wanted me to see the orthotics group that made my AFO to see if any adjustments could help. I saw Mitch, the AFO wizard, on Tuesday and he added a metatarsal pad to the AFO. I’ve noticed it does help a little with lifting my toes up, but the crunching is still happening.

And all Botox injections (as well as surgeries) at UL are “officially” on hold until the COVID-19 pandemic eases up. (But, I noticed something on the patient app that makes me think maybe I’ll have my surgery sometime in May. Nothing definitive yet, but there’s an appointment scheduled for pre-op labs at the surgery center in mid-May. Maybe they forgot to cancel it or maybe it’s a placeholder. 🤷🏻‍♀️ I’m praying🙏🏻🙏🏻 it means that surgery might be in May!!)

During my appointment with Dr. Shaw he had attached this electrode to my lower leg to send varying levels of jolts to certain parts of my foot to get it to respond. It feels like it’s pulsing from the inside out on an earthquake level. It was incredibly painful and at one point he said “Go to your happy place.” I tensely responded “My happy place is CLOSED!” 😂

As I was leaving Dr. Shaw’s office he asked “Are you sleeping in the AFO?” I laughed and said “No”. He said that I definitely should be wearing it 24 hours a day, except for showering. WHAT⁉️ No one has ever told me that! He said that they want to protect the screw thingy (total medical term there!) until it becomes part of the bone. And the weight of a blanket can cause the foot to lay too flat and cause the screw to come out. WhatTheWhat?! He said my screw looks good, but to start wearing the AFO while I’m sleeping. I didn’t bother mention that I sleep with 2 weighted blankets at night. 🤷🏻‍♀️

So I slept in the AFO last night. Wasn’t bad but when Mitch added the metatarsal pad on Tuesday, whatever glue he used is really stinky. So I kept waking up smelling that. I also had to add a strap with velcro ends to keep the AFO on my foot while I sleep. It has a strap built into the calf area, but nothing below.

That’s about it from here. Stay healthy, stay home, and take care of your mental health! ❤️

A Tale of Two Masks

Metatarsal pad added to my AFO

I made this shirt a couple of years ago and decided to wear it today. What are you watching nowadays?

Update

This past Thursday, March 26th, I was finally able to have my leg cast removed. it was actually supposed to be removed the week prior but my appointment was pushed back. I had surgery on February 4 and was in a non-weight bearing cast and wheelchair for the first 3 weeks, then that cast was removed and a walking cast put on.

I knew I’d see dead skin once the cast was removed, but I didn’t expect THAT much dead skin! Gross!

There is a long scar running up the back of my ankle, one running up the front of my ankle, and one on the inside of my foot. Scarring looks better today than even just a few day ago.

I’m now to wear my AFO (ankle foot orthosis) at all times when bearing weight. I’ve had this AFO since I was in the hospital after my stroke. And hated since the moment I wore it for the first time. It is really painful to wear with shoes and my toes curl downward when I stand/walk.

As soon as I got home from Dr. Shaw’s office on Thursday, I immediately ordered 2 new pair of shoes: one pair in my regular size 8 (for left foot), and one matching pair a size bigger (right). I’m really hoping the bigger shoe on my right foot helps with the toe curling/clawing. It not, I will have to find another solution. Not sure if a different AFO is needed or what, but I can’t walk with my toes so crunched. I’ve got the Hickies laces off most of the shoe holes so the shoe is loose but still the curling is still happening.

I’m also wearing heavy duty, tall compression socks to help with swelling. I be been wearing them since Thursday and the swelling is a little better. Which is a struggle for me because I’m wearing socks that don’t match 🤦🏻‍♀️.

So I’m thrilled to have the cast off and I do see improvement in the foot drop, but need to work out a solution for my long toes (my husband calls them my “monkey toes” because I’m able it pick things up off the floor with them 😂) I’m calling or texting Dr. Shaw on Monday to ask him what I can do for my toes if the bigger shoes don’t help.

Post Surgery Update

Today was my follow up with Dr. Shaw to have my yucky blue cast removed and a “walking” cast put on. I wasn’t sure what to expect because Dr. Google told me it could be a “boot” or a regular cast. I was hoping for a boot just because then I could shave my right leg. But, it was not meant to be.

I was horrified to see the UK blue cast after surgery. This University of Louisville ❤️🖤 girl did not like it one little bit. My University of Kentucky-loving bFf, Jaime, on the other hand, LOVED the blue. Yuck. Whatever, I told myself, it’s only 3-1/2 weeks. So today when I went to my appointment, the nurse asked me if I had a color preference for the next cast. My response? “Anything but blue!” She said “Ummmm…”. And at that point I just knew that I was destined to have a blue cast. It’s actually Carolina blue so at least there’s that. 🤷🏻‍♀️

Dr. Shaw said the ankle and foot looked really good. He put in staples on the inside of my ankle, dissolvable stitches on the outside lower ankle and regular stitches on the outside upper ankle. Today his nurse removed the staples and the regular stitches.

I tried counting the number of staples as they hit the metal bin, but lost count along the way. I think it was 13-18 staples. I was laying flat, so I couldn’t see what my ankle and foot looked like, but he said there was a lot of bruising. I will wear the Carolina blue cast for 3 weeks and then move to an AFO (ankle-foot orthotic) for 8 months.

I don’t know what the results will be like for me. I’ve tried not to set my expectations too high or hope for too much, so as not to end up too disappointed. There are some things I hope and pray will happen for me. I kind of have them ranked in order of desire and possibility.

First, I want to be able to walk without being afraid of tripping. This surgery should at the very least allow me to do this.

Second, I would like to be able to drive with my right foot again. Currently I drive with my left foot, but I don’t know that I’d be able to rent a car with accommodations to drive that way or not. I feel like maybe it’s possible (ADA and all) but I am sure it’s not something that’s easy to do.

Third, I’d like to be able to jog or run. At the very least, walk fast. This one is the furthest out on my timeline because I just don’t know if it will be possible or when. I wasn’t a runner before I had my stroke, so I don’t pretend that I’ll like it if I’m ever able to do it, but it’s a hope. 🙏🏻

Fourth, wear some cute shoes! I have been in athletic shoes for three freaking years. Mama needs some cute shoes to wear!

I will have the second surgery on March 31st. This surgery will be on my forearm and elbow. It will be a release of the elbow flexors, biceps and brachial with Botox (not in my forehead!), fractional lengthening of flexor digitorum profundus and flexor pollicis lobby’s, and z-plasty flexor digitorum sublimis. All that is a lot of medical stuff but basically it’s tendon lengthening in the arm. I always ask for any leftover Botox for my forehead. So far, I have had no luck in getting any. 🤷🏻‍♀️

I walked around the house today after getting home from Dr. Shaw’s office. It’s very strange. I haven’t put weight on my right leg in 3-1/2 weeks but it is definitely uncomfortable walking around. I mean, I’m thrilled not to be in a wheelchair, banging every wall, doorway, piece of furniture, and appliance with the wheelchair (true story – there are black marks on most of the door frames to prove it!). But walking for the next 3 weeks is going to be uncomfortable in this cast. But, by the time I have my arm surgery on 3/31, I should be walking cast-free. And hopefully walking better! 🙏🏻

The first cast, which I called it the “pUKe blue”.

Carolina blue cast

Before Carolina blue was put on, I snapped this pic from my laying position – looks yucky!

My non-matching ugly cast shoe

The poor door frames need a paint touch up

Post Op Update

Surgery (Achilles tendon splitting, tendon lengthening) was on Tuesday and it wasn’t awful. Not a walk in the park. Actually no walking at all lol! I’ve felt little stabs of pain all over, top of foot, bottom of foot, ankle, heel, calf. Since I’m in a cast I can’t even see where all the incisions are. Last night when I was in bed, I felt my foot twitching really hard a few times.

Day 2 (Thursday) was really rough pain-wise. I couldn’t even lay still without hurting all over. I was given Lortab, which I have learned does not work in me. The only thing it does is make me jittery and restless. So I didn’t sleep at all and ended up taking only 2 pills before switching to ibuprofen and acetaminophen, alternating them every 3 hours. Day 3 (Friday) I felt pretty good and managed not to need anything for pain. I only took Tuesday and Wednesday off work. When I have a similar surgery on my arm in a few weeks (date TBD) I’ll probably take the whole week off. By then, though, I’ll be in a walking cast so at least I’ll be more mobile. I will ask for something different for post-op pain for that surgery.

Speaking of uncomfortable , I hate the wheelchair. My butt has always been bony. I remember being little, sitting in my granny’s lap and her asking “Have you been eating razor blades for breakfast?” 😂 So I got my 2” foam stability pad and added it to the wheelchair. I also cannot maneuver it very well. It feels like I’m constantly parallel parking and FAILING at doing so! Parallel parking is NOT something I can do with any ease – I spend more time turning the wheel one way, then the other while thinking “I am smarter than this!” Rolling into my office and getting behind my desk is very much the same. (Hey, I know my strengths, and parallel parking is not on the list).

I hate the cast so much. My leg get really itchy and I can’t do a thing about it. Annoying! My mom said to use a letter opener to stick down in a cast to try to scratch those itches. I would do it but I think Dr. Shaw said he was using staples to close up the incisions. I can’t even imagine snagging a staple with a nail file. Or having to explain what I did at some point.

The cast is also really heavy and I can only put weight on my left leg. So my left leg is getting really tired early in the day. Basically I’m doing one legged squats every time I transition to stand on my left leg from the bed to the wheelchair and the wheelchair to the couch, wheelchair to the toilet/shower. Also, my toes are exposed out of the cast, and is winter so they get a little cold. So I found a fuzzy, unstructured sock that I’ve been able to wedge over the cast. It’s pUKe blue (🤮) and the texture drives me nuts but whatev. 🤷🏻‍♀️

The funniest thing about this week has been our dog, Lexie’s, response to me. Normally, if I’m sitting on the couch, Lexie sits on the love seat or her “room” (cage). But since I got home after surgery, she has been by my side if I’m on the couch. If I’m rolling around in the wheelchair, she’s behind me (I mean, she’s probably seen me nail the walls and doorframes, so it might be out of self-preservation). 😂😂😂😂😂 This is not typical Lexie behavior. She likes to be close (same room) but doesn’t sit next to me ever. She will sit next to Tony, but not me. (He gives her treats, so s jogs likes him more – lol!). But, it’s been really sweet to see her act like a therapy/recovery dog.

In other news, apparently February is “foot issue month”. Two years ago this week I fractured my right foot.

19 days till I get the cast off, but who’s counting? (ME, I’M COUNTING!)

xo,

Jennifer

My bony butt-saving cushion:

My ride or die, fake therapy dog, Lexie:

My Facebook memory two years ago:

What’s New?

I keep thinking that I’m going to be better about updating this blog, and then suddenly it’s been six months and I haven’t done it. Forgive me!

So here’s where I am in my stroke recovery. I switched to occupational therapy in August of last year and I have seen some improvements in my right arm. At one of my first visits with my amazing OT, she had my start trying to move my right hand to my mouth. Oh, the things you do without thinking! It took me so long to make it happen. But after a few weeks of consistent practice, I can now move my hand to my mouth pretty easily. I’m left handed so trying to put a fork in my right hand felt so foreign to me.

I had Botox last in mid-October and by this point it has completely worn off. My hand is SO tight. I saw Dr. Shaw, an orthopedic surgeon before I had Botox and he wanted to see me after I had the Botox. So I saw him in early December and at that time he said I would benefit from surgery on my right leg and arm. So that is on the schedule for 2/4/2020.

Today I had my pre-op appointment with Dr. Shaw and he’s changed things up a bit. Rather than doing surgery on both my arm and leg at the same time, he wants to split them into separate surgeries a few weeks apart. We talked and decided to do the leg first on 2/4 and the arm a few weeks later. He said my arm needs more work than he expected – lengthen the elbow, z-plasty, release the wrist flexors, tendon lengthening of FDS in all fingers and thumb.

But, he said that he didn’t think he could do both surgeries in the time that had been allotted and he wants to give me a great result. While it would have been nice to get it all done at once, I’m actually ok with the change in plan.

So, the plan is first the leg. After surgery I’ll be in a non-weight bearing cast for 3 weeks. I’ll have to get a wheelchair to move around. After the first three weeks, I’ll get a new cast for three weeks and will be able to put weight on my leg. Then I’ll graduate to the dreaded AFO (I have one I got when I was inpatient at Baptist and I HATED it. But, I’ll wear it to heal. My hope is I’ll be able to wear cute shoes to my daughter’s wedding in June! 🤞🏻🤞🏻🤞🏻

I’ll have pre-op labs next week and then the countdown for surgery is on. I don’t know yet when the arm surgery will be but hopefully it’ll coincide with getting the second cast. I know I’ll need OT 2 days after surgery so if the timing works out, I won’t need a driver to get me there and in/out of the wheelchair.

Typically I would be ticked over a change like this. Like there’s a plan, and that’s what needs to happen, right? But I’m actually very ok with the change. Am I growing? Lol! I mean it’ll stink to have surgery on two different days but Dr. Shaw said it would be better so I’m going with his decision. There are bigger worries I supposed.

At this point, I have one task to take care of. When I got the AFO in 2017, it came with a “key” thing that you could adjust the heel. I need to find that key before I need to go in the AFO. I’m not sure who thought it was a good idea to hand a stroke/brain injury patient a key and tell them to keep up with it, but here we are. I know it’s in a little ziplock bag with a business card for the company that made it. I *think* it is probably in my office. But beyond that, I’m not sure.

I’m asking for prayers for Dr. Shaw, for my pain level to be manageable, for me not to hate the wheelchair too much, for the cast to not be annoying (will be the first time I’ve ever been in a cast!), and that patience will run rampant through me, my family, and my friends. God has totally got this! I have zero concerns about this surgery. I have very high hopes that the result will be worth it!

xo

Jennifer

A pic of my right foot – drop foot, a video of me walking, and finally, the dreaded AFO. Hoping for some improvement post surgery!