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?

@grandmar

@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….about surgery and neuropathy. The most likely cause of my trigeminal neuralgia was a neck disection to remove a salivary gland tumor. Tumor had to go. Doc was an artist sewing me up. But what went on during surgery is anyone's guess. But my doctor believes the ETN nicked the trigeminal nerve.

There are risks attached to any surgery, but it's no stretch to put blame on the surgery. Trigeminal neuralgia is no picnic. Can't say I regret the surgery, but surely regret the aftermath. 😥

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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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@margottaylor I've never seen any data pointing to the likelyhood of surgery causing neuropathy. I have no medical training or background so can only speak for myself. Any surgery has risks and anytime nerves are involved I'm assuming there is a possibility of damage to the nerves. I believe the risk is probably very small but we have no way of knowing for sure. There are circumstances where the risk of surgery is greater which I'm guessing are related to your overall health going into the surgery. Here are a couple of articles that may give you some insight.

Peripheral Neuropathy Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Obesity increases the risk of postoperative peripheral neuropathy after minimally invasive colon and rectal surgery.
https://www.ncbi.nlm.nih.gov/pubmed/24401880

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hi, I have sjogrens and small fiber neuropathy anyone else

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@johnbishop

@margottaylor I've never seen any data pointing to the likelyhood of surgery causing neuropathy. I have no medical training or background so can only speak for myself. Any surgery has risks and anytime nerves are involved I'm assuming there is a possibility of damage to the nerves. I believe the risk is probably very small but we have no way of knowing for sure. There are circumstances where the risk of surgery is greater which I'm guessing are related to your overall health going into the surgery. Here are a couple of articles that may give you some insight.

Peripheral Neuropathy Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Obesity increases the risk of postoperative peripheral neuropathy after minimally invasive colon and rectal surgery.
https://www.ncbi.nlm.nih.gov/pubmed/24401880

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Good response, @johnbishop.
@margottaylor, surgery is not typically lists as a cause for neuropathy (https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061) However, trauma or pressure on a nerve is a known possible cause.

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@geneseos

hi, I have sjogrens and small fiber neuropathy anyone else

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Hi @geneseos, welcome to Connect. I have small fiber peripheral neuropathy but only have numbness and no pain. How about you? Do you have pain with your small fiber neuropathy?

There is another discussion you may be interested in joining in here:

> Groups > Autoimmune Diseases > Sjogrens
https://connect.mayoclinic.org/discussion/sjogrens/

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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 You should call your surgeon and discuss the symptoms. Blood clots can be a risk of any surgery.

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@johnbishop

Hi @geneseos, welcome to Connect. I have small fiber peripheral neuropathy but only have numbness and no pain. How about you? Do you have pain with your small fiber neuropathy?

There is another discussion you may be interested in joining in here:

> Groups > Autoimmune Diseases > Sjogrens
https://connect.mayoclinic.org/discussion/sjogrens/

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hi mentor, yes I have pain, and numbness and tremor like shaking in legs and feet,

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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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@margottaylor All surgeries create scar tissue and it forms knots in the fascial layers which tighten. Everything is held in this net like a 3 dimensional spider web that weaves through all the tissues and organs. Myofascial Release therapy helps, and I have ha a lot of success wit hit. It can treat the tight scar tissue. Here is a discussion I created with lots of information about MFR. There is a link to find MFR therapists as well. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@margottaylor All surgeries create scar tissue and it forms knots in the fascial layers which tighten. Everything is held in this net like a 3 dimensional spider web that weaves through all the tissues and organs. Myofascial Release therapy helps, and I have ha a lot of success wit hit. It can treat the tight scar tissue. Here is a discussion I created with lots of information about MFR. There is a link to find MFR therapists as well. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter. Thanks for the shout out for Myofacial Therapy. I do it as much as I can afford and find great (short term) relieve from it.

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@jmjlove

@grandmar….about surgery and neuropathy. The most likely cause of my trigeminal neuralgia was a neck disection to remove a salivary gland tumor. Tumor had to go. Doc was an artist sewing me up. But what went on during surgery is anyone's guess. But my doctor believes the ETN nicked the trigeminal nerve.

There are risks attached to any surgery, but it's no stretch to put blame on the surgery. Trigeminal neuralgia is no picnic. Can't say I regret the surgery, but surely regret the aftermath. 😥

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@jmjlove
You are right, there is always a risk with any kind of surgery. That is why we need to educate ourselves about the kinds of surgery we are having, find the best possible surgeon (we can afford or insurance will pay), ask a lot of questions and then pray!
There are NO guarantees about anything.
I know I am happy with the 2 spinal surgeries I had.
My symptoms are gone and for the first time in over a decade I am pain free!!
I am in no way blaming my current problems on surgery since it started before I had my lumbar surgery.
As a matter of fact, I actually blame myself.
My person opinion is that if I had surgery sooner, I might not have had all this nerve damage.
As they say, "hindsight is 20/20.'
We can only do our best!
Have a great day!
Ronnie (GRANDMAr)

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@jenniferhunter

@dabshire You should call your surgeon and discuss the symptoms. Blood clots can be a risk of any surgery.

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I have several times and was told it has nothing to do with the surgery and was referred to my primary dr. That is why I am going Mon.

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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.

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Hi @dabshire – I have had two knee replacements – the last one in January 2019. I'm happy to say that I didn't experience that burning pain. I'm wondering – was your surgery a TKR or a repair? Here are a couple of links that might interest you:
https://connect.mayoclinic.org/discussion/burning-after-total-knee-replacement/?pg=1#comment-270890
https://connect.mayoclinic.org/discussion/foot-neuropathy-after-total-knee-replacement/
I would encourage you to come over to the Joint Replacement group and browse through the messages there. Lots of great information and people who are happy to share!

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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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@margottaylor Hmmmm…some many differentiations surgical procedures. I wonder if the cause of the neuropathy could have anything to do with anesthesia.

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@steeldove

@margottaylor Hmmmm…some many differentiations surgical procedures. I wonder if the cause of the neuropathy could have anything to do with anesthesia.

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Hmmmm. Not sure but I don’t see that in John’s article about potential causes of PN.

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My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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