Neuropathy after TKR: I'm 68 and fearful of future

Posted by daveage68 @daveage68, Jun 13, 2021

I had knee replacement 8 weeks ago. This seem to accelerate neuropathy in both lower legs. Numbness, feels like feet are freezing, legs feel heavy and tired after little exercise. I have always been very active, this is killing me.
Any success stories out there? I read where this is incurable Not sure if this is a quality of life I can live with. Do not want to be burden for wife and family. Looking for good news.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@johnbishop

Welcome @shep148, I think I might be venting also if I was told not to worry about the numbness after surgery and six years later I still had the symptoms. It was one of the possibilities my surgeon explained to me prior to having my TKR but I already have numb feet and neuropathy so it didn't make mine any worse. In my experience, most foam inserts in shoes are only good for 3 to 4 months max. I like Sketchers because they seem to feel good on the feet and I get the leather like versions for more support than the canvas ones. I normally get a new pair a couple of time a year because the foam sole breaks down.

Seeing a podiatrist might be a good idea to see if orthotics might help. Have you thought about getting a second opinion?

Jump to this post

Thank you John for your words. I have thought about going to a podiatrist . I think my fear is not being taken seriously. So I just keep moving (more slowly than I'd like) and not let it get me down 😊 It is just nice to hear from someone with a similar situation!

REPLY
@shep148

I am six years out from a TKR. The minute I woke up after my surgery my foot felt numb. I told my doctors in all my appointments after the surgery. I was told not to worry about it, the numbness will go away. On my one year check up from my TKR I told my doc I was still experiencing foot numbness. His reaction was total shock. It was like he had no idea I was having that problem and advised me to see a podiatrist. I am active I play golf and pickle ball and go to the gym. My activities are usually not as long as I would like because the longer I am active the worse my foot feels. I describe it like there is a block of cement on the bottom of my foot. I very rarely talk about it because it sounds so silly that something like that could be a problem. I have have found Nike sneakers give me the most support, but I end up buying sneakers (they are not cheap) and inserts every two months. I really am just venting because I thought maybe somewhere out there is someone that understands. So thank you for giving me this opportunity and any suggestions or helpful information is appreciated.

Jump to this post

I find some help against "cement foot" if I wear compression socks when I am active. But, I also need extra squish in the shoes or soles to reduce pressure of the ground. I like men's socks when I'm walking a lot. I do have orthotics, but finding that it is important for shoes to have some squish as well. You are right to keep active!

REPLY

most of you I see on here can walk and still be some what active. I have been in a wheel chair 7 months now. Post op neuropathy. PT with home health has made very little progress. I go Back to the doctor tomorrow, I dont even know what questions to ask !

REPLY
@danpinc2022

most of you I see on here can walk and still be some what active. I have been in a wheel chair 7 months now. Post op neuropathy. PT with home health has made very little progress. I go Back to the doctor tomorrow, I dont even know what questions to ask !

Jump to this post

Don't give up! Keep doing as much as you can. Medications may be helpful, but I would not trust anyone who thinks that is the only solution. Try lots of new things. So sorry you have to face this, you are not alone!

REPLY

Hi everyone! I just joined. My first post disappeared before I was ready to post. I will rewrite it. I have the nerve disease CRPS (Complex Regional Pain Syndrome type 2). This immediately started from misplaced steroid injection March 2007. The year before I had just recovered from Chronic Pain from a horseback riding accident. I have tried about everything for help. Two Spinal Cord Stimulators. The trials worked well, but permanent ones failed. Neurosurgeon will not remove the battery that is compressing nerves on my spine where I fractured back at T-11 and T-12 in riding accident. He wants to put a new SCS in. This makes no sense. Research shows SCS are not for CRPS and many other types of Neuropathy. They may work for hours or years. What does all of the electrical stimulation do to your nerves? Destroy or cause more injury? Now I am using Positivity, Mindfulness, Retraining the Brain in connection to nerves, Physical Therapy including water therapy help. Also Bio-feedback and guided imagery to help with sleep. Sometimes self-hypnosis helps with relaxation techniques. There are several positivity groups for Neuropathy. Avoid groups full of negativity. They may cause more stress than any of us need. Staying in the present moment opens an entire new world. This is difficult for me to get there for a few seconds. I have seen a different world with this. CRPS is now causing trouble with heartbeat and blood pressure. Cardio doctor had nerve heard of this disease. I have read it is now the most painful disease known to man. A 42 out of 50 on the McGuill pain scale. I hope to get to know everyone
. Hoping everyone's day goes well. Your friend, Doreem

REPLY
@danpinc2022

most of you I see on here can walk and still be some what active. I have been in a wheel chair 7 months now. Post op neuropathy. PT with home health has made very little progress. I go Back to the doctor tomorrow, I dont even know what questions to ask !

Jump to this post

Look up questions to ask the doctor. Take them with you. Get answers. Many doctor's avoid the questions. Stay assertive.

REPLY

I am 82 and have suffered with Motor Neuropathy for a number of years. My legs and feet are numb and freezing cold, and my hands are now also becoming numb, which means I constantly drop things. I do get that awful burning itching soreness, particularly in my feet at night, which makes sleeping very difficult. I have tried various remedies, but the Specialist I saw seemed to think that I now just have to live with this. My worst problem is lack of balance, especially on uneven ground. I have already had a broken pelvis through a bad fall, and am constantly wobbling like a drunk! Most embarrassing. My salvation is my electric scooter, on which I can go for miles and walk my dog at the same time, as trying to walk at all now is extremely exhausting. I do relate to everyone on here, it is such a miserable illness, and we seem to hear little about it - apart from on here. I now try hard to 'switch off' from thinking about things, I realise I have achieved a very good age, and I am grateful for that. Difficult though things are - it is still better than the alternative!

REPLY
@danpinc2022

most of you I see on here can walk and still be some what active. I have been in a wheel chair 7 months now. Post op neuropathy. PT with home health has made very little progress. I go Back to the doctor tomorrow, I dont even know what questions to ask !

Jump to this post

Please don’t give up; I spent 6 months in a wheelchair when I got my sudden onset of idiopathic PN at age 51. Today I drive - my brain finally learned how to help me balance again, restore confidence in where my feet were positioned, and walk with walker or cane, or waddle about short distances on my own. I have no advice on what questions to ask doctor though, as I feel I have asked them all over my 5-6 years with this, and my answers have always been “we don’t know”, (hence idiopathic). A couple university medical center doctors said to just sit and wait and see what happens (did I mention 5-6 years?) What DID happen was physical therapy; in rehab nursing home first, then in my home, then outpatient. Yes, it was hard getting around without my support system, but today I am grateful for where I am and am having fewer pity parties for myself. It may be different when neuropathy is caused by post-op, we’re all different on here, but I’m praying you stick it out with PT and are able to enjoy some freedom out of that wheelchair very soon! And keep communicating here on Connect, I have learned more on here from experienced people than I have from my doctors since neuropathy is so befuddling.

REPLY

THANK YOU, THANK YOU SOO MUCH
just what I needed to hear, That's what my pt folks tell me. I was pretty down until I read your comment.

REPLY
@drorvick

Hi everyone! I just joined. My first post disappeared before I was ready to post. I will rewrite it. I have the nerve disease CRPS (Complex Regional Pain Syndrome type 2). This immediately started from misplaced steroid injection March 2007. The year before I had just recovered from Chronic Pain from a horseback riding accident. I have tried about everything for help. Two Spinal Cord Stimulators. The trials worked well, but permanent ones failed. Neurosurgeon will not remove the battery that is compressing nerves on my spine where I fractured back at T-11 and T-12 in riding accident. He wants to put a new SCS in. This makes no sense. Research shows SCS are not for CRPS and many other types of Neuropathy. They may work for hours or years. What does all of the electrical stimulation do to your nerves? Destroy or cause more injury? Now I am using Positivity, Mindfulness, Retraining the Brain in connection to nerves, Physical Therapy including water therapy help. Also Bio-feedback and guided imagery to help with sleep. Sometimes self-hypnosis helps with relaxation techniques. There are several positivity groups for Neuropathy. Avoid groups full of negativity. They may cause more stress than any of us need. Staying in the present moment opens an entire new world. This is difficult for me to get there for a few seconds. I have seen a different world with this. CRPS is now causing trouble with heartbeat and blood pressure. Cardio doctor had nerve heard of this disease. I have read it is now the most painful disease known to man. A 42 out of 50 on the McGuill pain scale. I hope to get to know everyone
. Hoping everyone's day goes well. Your friend, Doreem

Jump to this post

Greetings to you @drorvick. What a strong and aggressive (in a good way) patient you are. I applaud you for reaching out to learn and practice non-traditional methods like Mindfulness. It is my chosen way of coping with the pain and discomfort of SFN (small fiber neuropathy). My only medication for pain is medical cannabis. In addition, I use Duloxetin to keep the lid on my anxiety. I will keep this welcome short and just simply say.......positivity creates possibilities. You will find the best direction for you and we on Connect will do everything we can to help you along the way.

May you be free of suffering and the causes of suffering.
Chris

REPLY
Please sign in or register to post a reply.