Amputation Left Above-Knee Amputation, 22 April 2025

[WFD]

End of week 22 / End of month 5 update -

Not too much change. My RoM fluctuates up and down a little and is at 80° today. Swelling in the morning is largely unchanged at about 3.5cm larger than my good knee. Temperature-wise, the heat in my knee as measured at the end of the day, is starting to decrease, down to 2-3°F from 5-6°F relative to my good leg, so perhaps the inflammation is starting to subside. If that happens then I can start pushing the stretching and eventually start strengthening exercises.

The pain in my shin from the compressed peroneal nerve is not subsiding - I have an appointment on August 19th with my surgeon to see if we can do something about it.

Despite the RoM issues, swelling and shin pain, my knee is starting to feel more solid, another sign that the inflammation may finally be decreasing after five months.

 

[WFD]

End of week 26 / Almost end of month 6 update -

I finally got to see the doctor (he had rescheduled on me) and he says that what I thought was a compressed peroneal nerve is actually overwork and overstress of the shin muscle (anterior tibialis) caused by my insufficient RoM. Poor RoM causes the shin muscle to strain to flex the ankle and lift my foot so it doesn't catch on the ground when swinging the leg forward while walking. I think the peroneal nerve was involved in the beginning, judging by the symptoms, but what he says makes sense now.

By using my phone to take videos I found that when my leg is behind me, and starting to swing forward to take a step, that my flexion is very poor, maybe 40-50°, where I can normally get 70-80° when sitting on the floor or on a chair. In the latter situation my hip is flexed and the quad is not under any tension, and does not affect my RoM. I find that over more than two years of reduced RoM my quad has gotten very short and tight, and this affects my RoM when the hip is extended while walking.

The problem is that most stretches that stretch the quad or the knee set off the painful shin muscle problem. By experimenting I think I have found some stretches that do the job without triggering the shin problem. Using these, in this past month I have moved up from 70 to 80°. This doesn't sound like much to most people but it is a lot to me if it means I can walk without pain.

I'm also trying to get a metals sensitivity test done but am having problems getting the surgeon's office to call me back.

 

[WFD]

End of week 31 / Just past seven months -

I received the results from my metal sensitivity tests and I am as normal as can be, so no chance of blaming my arthrofibrosis on that. I don't know how I feel about it - it would be nice to know the root cause, but fixing it would would have meant *another* revision, this time with hypoallergenic implants (BAM BAM BAM - sound of head pounding on desk). So now I don't have to get another revision but I don't have a fix either. Honestly at this point I would be happy if just the pain in my shin goes away.

The shin pain continues to get worse and on bad days I am almost completely crippled. I have had to abandon nearly all my stretching exercises because the pain is excruciating. I am pretty sure the surgeon was wrong and that the peroneal nerve is involved, so I've made an appointment with a neurologist. Appointments with highly-rated neurologists are out to June or July of 2023 (!) but the scheduling coordinator advised me to get a telehealth appointment (which I can get in about a month) and then if the neurologist agrees that action needs to be taken she can get me in relatively soon. So now I have a telehealth appointment on 11/10, and I am counting the days.

So one interesting development - my surgical knee is consistently more than 4cm larger than the non-surgical knee when measured first thing in the morning, even at seven months, and it was gradually getting worse. About a week ago, my primary care doctor added a diuretic to my regular BP med because my BP has been spiking. In only a week my surgical knee has lost 1 to 1.5cm in circumference and my RoM has increased to from 80 to 85°. I wonder what might have happened if I had been given a diuretic in the beginning to get the swelling down? I'm not recommending this - diuretics have side effects that could be serious for some people - but it does make me wonder.

 

[sistersinhim]

It seems that everything in our bodies affects everything. Pain will increase your blood pressure and swelling will increase your pain. It's like a domino effect. I pray your medical team can find the cause of your swelling and pain.

 

[JusticeRider]

I found that when my leg is behind me, and starting to swing forward to take a step, that my flexion is very poor, maybe 40-50°, where I can normally get 70-80° when sitting on the floor or on a chair. In the latter situation my hip is flexed and the quad is not under any tension, and does not affect my RoM. I find that over more than two years of reduced RoM my quad has gotten very short and tight, and this affects my RoM when the hip is extended while walking.

WFD, this is exactly what I’m going through right now. Neither my PT nor my surgeon have any solutions for me. Walking is miserable and I do worry about the effect on my body…calf, shin, ankle, hip, etc. from walking this way. Let me know if you get any more insight into that piece of things.

I’m so sorry you’ve been struggling with so much for so long. It really isn’t fair. I too am someone who researches, analyzes, and plans, and I expect those measures to help me fix things when they are broken. When all of my efforts fail to get results, it can feel extremely defeating. But I am inspired to see that you are not giving up. I am rooting for you!

 

[WFD]

Neither my PT nor my surgeon have any solutions for me. Walking is miserable and I do worry about the effect on my body…calf, shin, ankle, hip, etc. from walking this way. Let me know if you get any more insight into that piece of things.

I am rooting for you!

Thanks, @JusticeRider .

A stretch that I was able to use for a while before the increasing pain in my shin made it too painful to do was the following:

1) Lay on the floor on my stomach with my feet up behind me on a couch so my knee was flexed about 40° or so - not enough to put any stress on my knee.

2) Use my arms to push my upper body up off the floor into a Cobra stretch.

3) By varying how close I get to the couch I can shift the stretch up or down my thigh. If I feel it in the knee then I am too close to the couch and move away.

I find that I could stretch my thigh without stressing my knee using this method. Unfortunately the pain in my shin keeps me from doing this without painful repercussions.

This might not work for you - you'll have to try it yourself.

Here's a (not very good) picture:

 

[JusticeRider]

Thanks, WFD! I will try this! As you know it is very hard to stretch your quads when your knee doesn’t like to bend. I’ll be checking on your progress too. Best of luck!

 

[WFD]

End of week 35 / 8 months tomorrow -

Almost three weeks ago the severe pain in my shin just lifted - it went down by about 80% overnight and there are no more spasms, though the shin and occasionally ankle do get a little stiff and painful. I suspect that what I had was a mild form of chronic compartment syndrome, in which the irritated muscle swells inside the fascia that encapsulates it, pressing on the peroneal nerve and causing a high level of pain. When the swelling decreased enough, the pressure was taken off the nerve and the spasms and severe pain stopped.

In my last update I mentioned how the swelling in my knee sharply decreased a few days after my doctor added a diuretic to my blood pressure meds - this sudden improvement in my shin pain occurred about two weeks after I started the diuretics, so perhaps there is a cause and effect going on here.

I've been able to go from no more than 1,800 steps per day to 6,000-8,000 with no negative repercussions, as long as I ice every night. I'm expanding my stretching and strengthening regime, and am even able to do outside chores. It's Fall here in New England and we have 3 acres of grass and lots of gardens, and there is a lot of work to do to put everything to bed for Winter.

My RoM is currently 90°, which doesn't sound like much, but I haven't seen better for more than two years, and I'm hopeful I can increase it some.

For the first time in more than two years I am actually making progress - you can't imagine how much that means to my state of mind. Or maybe some of you can...

I'm off now to make lunch, then some more exercises, and then I need to swap over the mower decks in our riding lawn mower so I can start clearing all the leaves from our 3 acre lawn.

 

[Jaycey]

@WFD Great update! So glad you are seeing progress in this recovery. It can take awhile for all the settle. But your patience paid off. Well done!

 

[sistersinhim]

It sounds like you have turned a corner. Yay!

 

[JusticeRider]

This is amazing! So happy for you, WFD

 

[Susie-Q]

This is great news, @WFD !!!

 

[JusticeRider]

WFD, tell me about the diuretic…what did you take and for how long? I’m curious because I’ve had a lot of persistent swelling. It sounds like it might have been a game changer for you!

 

[WFD]

@JusticeRider , the diuretic I am taking was prescribed to me to control increasing high blood pressure, not for purposes of reducing swelling, though I see in the scientific literature that it has been investigated and has show some promise, in one small animal study, which strangely enough, showed only a small reduction in swelling but a significant reduction in joint stiffness. You can find an abstract of the study on PubMed:

The effects of diuretics on posttraumatic joint stiffness and limb swelling in a rabbit periarticular fracture model
M R Safran 1, M H Kody, J M Kabo, F J Dorey, R A Meals
PMID: 8168315

The diuretic I am taking is hydrochlorothiazide 25mg.

The swelling in my knee decreased by about 1-1.5 cm in circumference within 48 hours, then no change after that. The resolution of my shin pain occurred in about two weeks but of course might be a coincidence.

I'm not a doctor and cannot recommend you take something like this - diuretics have their own risks.

Diuretics are used to treat edema of various kinds, so their use for this purpose is not new - you should discuss with your doctor, and certainly don't take anything, even over the counter, without discussing it with them (meaning the doctor.)

 

[JusticeRider]

Ok thanks WFD, that’s very interesting! I thought your Dr had prescribed the diuretic specifically for the swelling in your knee. Since it was for your BP, what a happy coincidence that it may have also helped your swelling! Perhaps if there are more studies done, they may prescribe it for that use in the future.

I wouldn’t consider trying something like that without a dr’s approval. It might not even be safe for me because I have unusually low blood pressure. Too bad though, I was interested when you mentioned that it may have helped you turn a corner!

Have you been able to sort out your walking stride so you can bend your knee normally to swing that leg forward? If so, I’d love to hear how you were able to do it. Mine has improved but still isn’t right and I’m still flexing that toe up toward my shin to bring the foot forward…grrr.

It’s inspiring to hear how well you’re doing and I’m just so glad for you! Thanks for sharing everything!

 

[WFD]

@JusticeRider , thanks for your kind comments. You are right, it was a happy accident, but that is why it is important to share it with everyone in case it is useful.

From the reading I've done, there are diuretics that are prescribed for edema that don't affect blood pressure as much so you might discuss it with your doctor.

On the walking stride, as you describe it is still difficult to walk normally without overstressing the shin muscle. What I have been working on is stretching to improve the knee RoM to relieve the need to flex the ankle and stress the shin muscle. In particular, I stretch the quad muscle because it has gotten short and tight after two years of restricted motion. I use the stretch I described previously, plus (now that I am getting better) a stretch commonly called a couch quad stretch:

(from https://i0.wp.com/mathiasmethod.com/wp-content/uploads/2016/03/img_0426.jpg?w=308&h=312&ssl=1, not a picture of me - I am not nearly that flexible with my surgical leg. Yet.)

The idea is that if I can increase the knee RoM a little, then the shin muscle will not overwork as much, which will lead to less swelling, giving me more RoM, etc., a virtuous circle which I hope will end up with me pain-free.

The other things that help are, first, as many people have stressed, really emphasize the heel-toe process of walking. I exaggerate this to the point of nearly goose-stepping. It sounds and looks silly but it works.

The second thing is (for me) to emphasize pushing off with the calf muscle at the end of the stride before lifting the leg off the ground and swinging it forward. In my case at least, two years of restricted motion led to an atrophied and weak calf muscle, and so I was striding forward from a foot flat on the ground, instead of one up on the ball of the foot, as normally happens.

I'm not sure that makes a lot of sense when I describe it, but try it and see if it works for you.

In the meantime I have to avoid tall grass and steep downhills. I do my walking on the driveway (it's 1,000 feet long) or on the grass if it's trimmed.

Before I learned to emphasize the heel-toe process I was swinging my leg forward not that far to the front and my foot was landing on the mid-foot or even the ball of the foot. Because the foot was planting not that far in front of my body, my leg had to swing even further to the rear during the stride, as if it had to swing through the same distance as my good leg, perhaps so the two sides of my body would be in balance.

I found that when I made sure to swing the surgical leg far forward and land on the heel, that it then didn't need to swing as far to the rear, and therefore not stressing the short and tight quads or requiring as much knee RoM.

Again, my apologies if my description is not clear. Give this a try:

1. Swing the surgical leg far forward and exaggerate walking heel to toe, and,
2. Make sure to push off with the calf muscle so the foot on the surgical side rises up on the ball of the foot before striding forward.

...and see how it does. Let me know if I can help with anything else.

 

[sistersinhim]

This is what @WFD is talking about:

 

[JusticeRider]

Thank you @WFD! Your descriptions are very clear and do make sense! I appreciate you taking the time. And thank you @sistersinhim for the helpful graphic. It is transitioning from the terminal stance to the initial contact phase that I struggle. Like WFD mentioned before, even though I can get enough range of motion for walking when I am sitting, doing heel slides, etc, it feels like my leg can’t bend enough in that part of my stride when I am walking.

It is getting better though and if I go slowly enough and concentrate, I can almost walk with a normal stride on good days. Days when I have more swelling it is more difficult. And like you, WFD, I have a harder time on grass and uneven footing. I also noticed it is much easier for me barefoot than with shoes on.

The good news is that I have the initial contact phase down pretty well. I did notice that it helps to take a bigger stride forward and really roll off the heel to the toe. Now if only I could get better at the toe departure! I’m working on it, and as a matter of fact, I’ve been trying the shopping cart method of practice that I’ve seen mentioned multiple times in the forum. Sistersinhim, was that your tip? Or maybe Jockette? I do think it’s helping.

WFD, I also use the stretch you first told me about, along with a similar one I created to try to stretch my quad. The couch quad stretch you included this time looks intense! Not sure if I am ready for that one yet, although maybe as you said I could try it but not to such a deep flexion.

Anyway, you’ve been a wealth of information and I really do appreciate it. Reading your story, I saw some similar struggles to what I’ve been dealing with (although not to the extent that you have!) so your sharing things you have learned that worked for you is so valuable.

 

[WFD]

WFD, I also use the stretch you first told me about, along with a similar one I created to try to stretch my quad. The couch quad stretch you included this time looks intense! Not sure if I am ready for that one yet, although maybe as you said I could try it but not to such a deep flexion.

You can put a cushion on the floor as a stop, to limit range, when and if you decide to try it. If you get benefits from the stretch done lying on the floor with your feet up on the couch, keep doing that one. When it doesn't give any more benefit (as happened with me as I improved) then you can try the more aggressive one, using cushions. It is a harder stretch and if you are not ready you might strain something, so be careful.

 

[WFD]

End of week 39 - Nine months in a few days

Well, a month ago I told you all how much better I was doing and all the yard work etc. that I was getting done. Of course I was doing way too much and suffered a relapse, and it has taken almost the whole month since then to get back on track. After all my surgeries you would think I would know better.

Anyway, I am doing better now and limiting my activities as best I can to avoid another relapse. My RoM is still around 90° and I am stretching carefully, hoping to increase it to 95 or 100°, which will make walking and other activities easier. As long as I don't go over 3,000-3,500 steps per day I seem to be OK.

Interestingly, the thing that bothers my shin the most is the stationary bike, so I have to limit that.

If I can get to the point where I can be on my feet for hours at a time without pain at least I will be able to do useful things around the house and yard.