Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@dabshire

I have a question that I cant find an answer to…I had knee surgery 4 wks ago. I had a tear in the meniscus and cartlidge. 2 wks after the surgery I started having burning and stinging and numbness in both feet. It is more in the leg that had the surgery. Has anyone experienced this????

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Hi @dabshire, welcome to Connect. I'm not sure any of us members can answer your question other than share our own personal experience with surgeries or health problems. I think it's possible for nerve damage during a knee surgery or with many surgeries. Have you discussed it with your surgeon or doctor?

@contentandwell, @debbraw and @JustinMcClanahan may be able to share their experience with knee surgery. I had knee surgery on my right knee in the 70s to remove some torn cartilage and that knee is now bone on bone. I am scheduled to have a knee replacement done in a few weeks and was a little concerned about a nerve block being done on the knee since I already have small fiber peripheral neuropathy in my legs and would like not to make it worse.

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I have asked the surgeon about the problem with my feet and if it could be the knee healing or what…..His reply was it was.not anything associated with the surgery and could be something else and referred me to my primary Doctor. I have an appt for Monday. I just dont understand how this just started all at once after the surgery. I will reply with what my Doctor tells me. It is driving me insane. Hopefully I can find an answer. Thanks for replying.

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@dabshire

I have asked the surgeon about the problem with my feet and if it could be the knee healing or what…..His reply was it was.not anything associated with the surgery and could be something else and referred me to my primary Doctor. I have an appt for Monday. I just dont understand how this just started all at once after the surgery. I will reply with what my Doctor tells me. It is driving me insane. Hopefully I can find an answer. Thanks for replying.

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@dabshire I have no medical training or background but would think that it would only impact the leg that had the surgery. There is some information about the nerve here but it doesn't mention whether or not it could affect both legs.

Femoral nerve dysfunction
https://medlineplus.gov/ency/article/000687.htm
Case Scenario: Nerve Injury after Knee Arthroplasty and Sciatic Nerve Block
http://anesthesiology.pubs.asahq.org/article.aspx?articleid=1933823

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@dabshire

I have a question that I cant find an answer to…I had knee surgery 4 wks ago. I had a tear in the meniscus and cartlidge. 2 wks after the surgery I started having burning and stinging and numbness in both feet. It is more in the leg that had the surgery. Has anyone experienced this????

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@dabshire
Wow, I've had that surgery done twice, once on each knee.
I never had that symptom.
I suggest you call the surgeon who did the surgery.
Feel well!
Ronnie (GRANDMAr)

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@dabshire

I have asked the surgeon about the problem with my feet and if it could be the knee healing or what…..His reply was it was.not anything associated with the surgery and could be something else and referred me to my primary Doctor. I have an appt for Monday. I just dont understand how this just started all at once after the surgery. I will reply with what my Doctor tells me. It is driving me insane. Hopefully I can find an answer. Thanks for replying.

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There have been a number of cases where neuropathy has begun after surgery (anything from back surgery to a hysterectomy to hip surgery and others) — however, the surgeons won't admit that it had anything to do with the surgery — they probably nicked or did something to a nerve — however, it never gets documented by the surgeon

Liked by grandmaR

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Hi All!

I actually posted in my Chronic Pain group, but I think I should post here, too.
I went to the neurologist and neurosurgeon this week.
The neurologist said that I indeed have neuropathy, but she did not give it a specific name of what kind.
The test results say that it is coming from my messed up spine (L4, S1).
My left side, according to the tests is worse than the right.
Since nothing is 'normal' with me, I have more issues with my right side than left, that is typically me.
My right big toe is gone as far as movement.
The other toes have a bit of movement up and down, but not much.
On my left foot, the big toe is starting to become worse and the other toes still have movement.
Both ankles are BAD!
I cannot swiivel them from side to side. As a result, both doctors said I CAN NOT LONGER DRIVE!!!
She said my nerves are clumping near the lumbar surgical site.
She also said that most of my lumbar vertebra are moved, at least slightly to one side or another.
I asked why I am not feeling pain, NOT THAT I WANT TO.
It has something to do with where the synapsis are and where the stenosis is.
Pain COULD be on the way, but we HOPE NOT!!
(I'll get back to that in a minute)
Now, my neurosurgeon is CONVINCED that there is more going on!
He is sending me for an MRI of my T-spine. He found a cyst in my spinal canal a time back and is checking to see if it has grown.
He said he can do a minor surgery to 'clean up' some of the issues, but all it will do is give me the ability to walk longer.
He also COULD NOT GUARANTEE (of course) that the surgery will result in pain (aside from the surgical pain).
At this point, I am NOT willing to take a chance since this is the first time in over a decade that I am PAIN FREE (except for minor OA pain, which I can deal with).
So, both docs are going to confer to see if they can decide what to do, if anything at this point.
The neuropathy is NOT from the surgery since it started months before.
I truely believe that I waiting so long to do anything more than injections and other interventions, that I developed this.
The nerve damage I have will NOT reverse, but it is progressive. It is my goal to find a way to prolong the progression.
This is all new to me. So far, I found that theraputic massage has helped. After my session, I could wiggle my toes a little bit, which is more than I was able to do.
Sorry for being so long, but those of you who know me, know I am wordy.

One question……Has anyone retrofitted your car with hand controls? If so, can you give me a ball park of how much it costs? Who actually does the modifications?

Thanks all!
Ronnie (GRANDMAr)

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@lois6524

There have been a number of cases where neuropathy has begun after surgery (anything from back surgery to a hysterectomy to hip surgery and others) — however, the surgeons won't admit that it had anything to do with the surgery — they probably nicked or did something to a nerve — however, it never gets documented by the surgeon

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@lois6524
I agree with you, Lois.
If the pain or symptoms start right after surgery, what are the chances it DID NOT COME FROM THE SURGERY?
The are so many nerves, muscles, veins, bones, etc., it has to be difficult even for the best, experienced surgeon.
Today, with medical malpractice suits, you are not going to get a doctor to admit to anything.
Our choice is to sue or find a way to either live with the results or find a 'cure.'
Ronnie (GRANDMAr)

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@grandmar

Hi All!

I actually posted in my Chronic Pain group, but I think I should post here, too.
I went to the neurologist and neurosurgeon this week.
The neurologist said that I indeed have neuropathy, but she did not give it a specific name of what kind.
The test results say that it is coming from my messed up spine (L4, S1).
My left side, according to the tests is worse than the right.
Since nothing is 'normal' with me, I have more issues with my right side than left, that is typically me.
My right big toe is gone as far as movement.
The other toes have a bit of movement up and down, but not much.
On my left foot, the big toe is starting to become worse and the other toes still have movement.
Both ankles are BAD!
I cannot swiivel them from side to side. As a result, both doctors said I CAN NOT LONGER DRIVE!!!
She said my nerves are clumping near the lumbar surgical site.
She also said that most of my lumbar vertebra are moved, at least slightly to one side or another.
I asked why I am not feeling pain, NOT THAT I WANT TO.
It has something to do with where the synapsis are and where the stenosis is.
Pain COULD be on the way, but we HOPE NOT!!
(I'll get back to that in a minute)
Now, my neurosurgeon is CONVINCED that there is more going on!
He is sending me for an MRI of my T-spine. He found a cyst in my spinal canal a time back and is checking to see if it has grown.
He said he can do a minor surgery to 'clean up' some of the issues, but all it will do is give me the ability to walk longer.
He also COULD NOT GUARANTEE (of course) that the surgery will result in pain (aside from the surgical pain).
At this point, I am NOT willing to take a chance since this is the first time in over a decade that I am PAIN FREE (except for minor OA pain, which I can deal with).
So, both docs are going to confer to see if they can decide what to do, if anything at this point.
The neuropathy is NOT from the surgery since it started months before.
I truely believe that I waiting so long to do anything more than injections and other interventions, that I developed this.
The nerve damage I have will NOT reverse, but it is progressive. It is my goal to find a way to prolong the progression.
This is all new to me. So far, I found that theraputic massage has helped. After my session, I could wiggle my toes a little bit, which is more than I was able to do.
Sorry for being so long, but those of you who know me, know I am wordy.

One question……Has anyone retrofitted your car with hand controls? If so, can you give me a ball park of how much it costs? Who actually does the modifications?

Thanks all!
Ronnie (GRANDMAr)

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Hi Ronnie @grandmar@steeldove posted a photo of hand controls he has had installed. I'm not sure of the cost other than it's expensive. He can probably give you a ball park figure. Here is the post he made with a photo.
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=70#comment-124253

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@johnbishop

Hi Ronnie @grandmar@steeldove posted a photo of hand controls he has had installed. I'm not sure of the cost other than it's expensive. He can probably give you a ball park figure. Here is the post he made with a photo.
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=70#comment-124253

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@johnbishop
Thank you, John.
Boy, you are an amazing resource!
I cannot imagine the time you spend helping others on this site!
You are a keeper!
Ronnie

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@grandmar

@johnbishop
Thank you, John.
Boy, you are an amazing resource!
I cannot imagine the time you spend helping others on this site!
You are a keeper!
Ronnie

Jump to this post

Aw shucks…@grandmar, thank you for the kind words. I think this is the type of hand controls @steeldove has.
http://www.kempf-usa.com/

Liked by grandmaR

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@johnbishop

Hi @dabshire, welcome to Connect. I'm not sure any of us members can answer your question other than share our own personal experience with surgeries or health problems. I think it's possible for nerve damage during a knee surgery or with many surgeries. Have you discussed it with your surgeon or doctor?

@contentandwell, @debbraw and @JustinMcClanahan may be able to share their experience with knee surgery. I had knee surgery on my right knee in the 70s to remove some torn cartilage and that knee is now bone on bone. I am scheduled to have a knee replacement done in a few weeks and was a little concerned about a nerve block being done on the knee since I already have small fiber peripheral neuropathy in my legs and would like not to make it worse.

Jump to this post

@dabshire @johnbishop I have had TKRs on both knees, and prior to that had meniscus surgery on both. I have never had a problem similar to your experience.
Since the stinging and numbness is in both feet I don't see how it could be related to surgery on one knee, unless your gait has altered in such a way that it is causing a foot problem. Frankly, though I think that's probably a stretch but it does seem odd that it started after the knee surgery.
I will be looking forward to hearing what your primary has to say about it.
JK

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@contentandwell

@dabshire @johnbishop I have had TKRs on both knees, and prior to that had meniscus surgery on both. I have never had a problem similar to your experience.
Since the stinging and numbness is in both feet I don't see how it could be related to surgery on one knee, unless your gait has altered in such a way that it is causing a foot problem. Frankly, though I think that's probably a stretch but it does seem odd that it started after the knee surgery.
I will be looking forward to hearing what your primary has to say about it.
JK

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I originally thought it came from Diclofenac gel because I had used it on both knees for awhile and when the burning and stinging started at first it was just the rt foot. I put some of it on the rt foot and within 30 mins it got worse. I really dont know I havent used it in 10 days. This is just so mind boggling and driving me insane. Will let you know what the Dr. says.

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@johnbishop

Aw shucks…@grandmar, thank you for the kind words. I think this is the type of hand controls @steeldove has.
http://www.kempf-usa.com/

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@johnbishop
You are more than welcome. The truth is the truth.
And thanks for the attachment.
Ronnie

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@dabshire

I have a question that I cant find an answer to…I had knee surgery 4 wks ago. I had a tear in the meniscus and cartlidge. 2 wks after the surgery I started having burning and stinging and numbness in both feet. It is more in the leg that had the surgery. Has anyone experienced this????

Jump to this post

I'm puzzled as I've been noticing that many of us with a form of Neuropathy have experienced it following a surgical procedure…back, knee, etc. Is there data that correlates the onset of Neuropathy with surgeries? John or Colleen…do you know? Thanks

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@margottaylor

I'm puzzled as I've been noticing that many of us with a form of Neuropathy have experienced it following a surgical procedure…back, knee, etc. Is there data that correlates the onset of Neuropathy with surgeries? John or Colleen…do you know? Thanks

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This is all new to me. I did not expect this to happen.

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