Mitsugirly's Foot Journey a journal of my struggles
March 1, 2020: Updates
Well, sadly, I can't say there's anything new to report at this point. The swelling is still the same and the pain is also the same as well. Walking is very difficult and some days are worse than others. I feel like there's no end in site. If I walk any distance at all, I'll be in a wheelchair the rest of the day or on crutches the following day. It sure makes life difficult. I am also starting to feel pain in my leg and I'm starting to freak out a little about a possible blood clot again.
March 3-4, 2020: Pain & Swelling
I received some bad news this morning.
I am very grateful that I'm no longer in a wheelchair and up walking around these days. I'm still having a lot of pain and difficulty with my ambulation. I also can not walk far distances without a lot of swelling and increased pain. I have battled it out with my ortho and according to them, I should not be having this pain and they will no longer give me any pains meds (cut off last Nov) and said this is the last time they would give me any nerve meds (which does nothing for the pain but does help with the constant tingling and feeling of my foot always being asleep).
My primary care doctor has been amazing and a great advocate for me. She has done tests and given me meds to help control the pain. Yesterday (3rd) she sent me to get a MRI due to the continued pain.
The findings was not what I wanted to hear, but at least it gave me answers.
Findings of a sprained ligament, a fragment of the bone appears to not be in place or lined up, swelling was also found. So now she is referring me to a foot and ankle specialist. If you remember, when I first hurt my ankle/leg and had surgery, my ortho doctor said I would be 1) up and walking at 8 weeks (even after a second surgery for the infection and the blood clots) and 2) I would be having a third surgery in December to remove the hardware on the right side and also the 2 screws fusing my tib/fib together. December came and gone and they said they would not be removing the screws but yet there's a chance they could break under stress!!! Remember my neighbor and my son in law that both had this done and both were told DO NOT apply any pressure to the foot until these screws are removed!! They were also told if the screws broke, it would be an extensive surgery to remove them (going in both sides of the foot again) and very painful. UGH! I was up and walking at 8 weeks and doing physical therapy with a lot of pressure applied, especially in directions that my foot/ankle just doesn't bend because of the screws.
So....here I am. Not knowing what's next for me. 😞
This swelling is still the same and I refer to my leg now
as an elephant foot.
LATERAL COLLATERAL LIGAMENT COMPLEX: The anterior talofibular ligament is somewhat attenuated with intermediate intrasubstance signal but is grossly intact. The posterior talofibular ligament and calcaneofibular ligaments are intact. Findings compatible sequela of remote sprain of the anterior talofibular ligament.
BONE MARROW: ORIF of the medial and lateral malleoli with metallic susceptibility artifact obscuring the underlying bone. Posterior malleolar fragment remains ununited as best visualized on the sagittal T1 image sequence. No acute fractures identified. Mild edema within the lateral most aspect of the cuboid which is nonspecific and favored to be reactive/mechanical. Sequela of contusion also consideration given remote trauma.
Of course you can tell how swollen it is from the top or sides....but this is what it looks like from behind...
March 21, 2020: No good news yet
Well, no changes in the foot :( And COVID has hit. We are going on lockdown soon. I don't know what this means for me at this point.
I haven't received any calls yet to schedule for the bone specialist (or for my colonoscopy that I have been putting off for 4 years now and they are insisting I do it now that I had blood in my stool a few weeks ago). I'm thinking maybe all the doctors are putting new patients or visits on hold and just seeing the really sick people right now. I'm being patient. It's not like my foots going anywhere soon, and that includes the swelling. LOL
April 1, 2020: Testing for more clots
I'm having a lot of pain in my leg these days. A pain that isn't "normal". I'm scared that I may have another blood clot. So, a visit with my pcp and she sent me for a d-dimer blood draw. A d-dimer test looks for D-dimer in the blood. It is a protein that's made when a blood clot dissolves in your body. It is used to check for clotting problems.
I also was sent for an ultrasound.
I'm happy to say that I do NOT have another blood clot. I'm not sure what is going on but as long as it's not another clot, I'll deal with it. This is the best news! I think at this point, I'm just grasping for anything to give me answers as to what is going on, why the pain, why the continued swelling...just any answers. But this time it wouldn't be due to any blood clots.
April 9, 2020: Second Opinions
I'm still in a lot of pain and tons of swelling. I can't walk right, I get up in the mornings and can barely walk, going up and down stairs is such a task and I have to take one at a time and one foot at a time, the list goes on. Blah, blah, blah...same old story different day, month and now year. I'm tired. I'm fed up. Just functioning daily is exhausting and takes everything in me. Something can't be right.
I decided to contact another ortho surgeon for a second opinion. Maybe they can give me answers. Maybe they can tell me if the plate and screws need to come out. Do I need another surgery? Just give me something to go on. I won't just accept that this is my life now. I'm on a mission!
My appointment was today and we discussed my continued pain and swelling. We took x-rays to see what was going on.
After obtaining an XR the results were as follows:
There is evidence of syndesmotic screw fixation and ORIF of the medial malleolus. The proximal syndesmotic screw may be backing out. There appears to e a posterior malleolus fracture with proximal displacement. This fracture appears to be chronic in nature. There is a fracture fragment at the most distal aspect the medial malleolus that appears to be displaced in the medial gutter region.
I was informed with nothing but bad news. X-rays revealed that my foot did not heal aligned. I have a contracture in my Achilles tendon, which is causing my foot not to bend much.
Options of removing the hardware came up. He told me that he didn't think that removal would give me any relief. Going in and releasing the tendon "could" help with movement...or it might not. He said that he thinks that since there's such a little chance that it would do anything, he didn't feel it was worth the risk and re-healing process.
Next up would be the kicker and grand finale. He informed me that I would need an ankle replacement to get back to anything that resembled "normal" function and life. I was told that I would continue to always have swelling and always be in pain...until I could get this surgery. I was informed that I was "too young" to get the surgery at this time. He said he usually does not do this type of surgery on people below 60+ years or even older. However, he would be willing to do it in around 3 or so years.
Well this was NOT at all what I wanted to hear. I wanted to hear that he would remove this hardware. I wanted to hear that it would give me more mobility. I wanted to hear that if the hardware was removed, I would get my range of motion back and be able to walk right again. I wanted to hear that he could make the pain go away. JUST TELL ME SOMETHING!!!!
I left the office feeling defeated once again.
May 26, 2020: CT SCAN
I was sent for a CT Scan today to get a better look at "things" and especially if the screws were in fact backing out. This was done without contrast. These were compared to the x-ray from April 9th & the MRI from March 3rd.
Status post ORIF of the medial malleolus with a medial plate and screw construct in place. Callus formation is noted along both the anterior and posterior tibia. The medial malleolus fracture appears healed. Fracture lines of the distal tibia extending to the tibial plafond and do remain visible. Lateral plate and 2 syndesmotic screws in place spanning the distal fibula and distal tibia at the syndesmosis. The hardware is intact without evidence for loosening or failure. Very mild widening of the syndesmosis likely related to prior fracture. Small to moderate tibiotalar and subtalar effusions. No acute fracture identified. Osteopenia.
July-December , 2020: Acceptance
It's now summer and that means I can at least wear a "shoe" now...or at least a sandal because I don't have to try to fit my over sized foot into anything. However, it's very hard to walk in without any support.
Since it's sandal weather, the hubby keeps me looking fresh. (Notice the foot brace, I have tried wearing it on numerous occasions and within 10 minutes, it makes my foot fall asleep. It just doesn't work for me)
However, I have found a shoe that I CAN wear and they are Sketchers DeLite...which looks like a tennis shoe but there's no back to shoe and you slip it on. They have saved my life and they are very sturdy and do help with walking some.
Summer has been blah...not being able to do much, going places, hiking, swimming....it's just been rough sitting around not doing much.
Trust me, I had my moments were all I would do is sit and cry and get in my head that I'll never walk again and things will never be the same. It was rough. It's not easy bringing your entire bedroom down to the living room because you can't really move due to the pain and all you have to do is stare at 4 walls, a tv, or the back of your eyelids. It's depressing. The hubby and Sakari was so helpful and encouraging throughout it all and continues to help so much, which keeps my spirits up.
Mobility issues "ain't no joke!" You really do take things for granted. I will say that I have encountered more thoughtful people than not thoughtful people since I've been up and about. More than what I expected because let's be honest, we live in a society that it's all about me, me, me and no one else. 😞
Of course no changes in pain or swelling...