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

Hi Rachel, Thank you for your kind words and information. I just watched the video and found it very informative and also very scary. We are all still trying to understand why this would happen and realistically know we will never get to the cause. After watching video I see our approach has been to look at the SFN as though it was acute and not chronic. My son is still talking to doctors that want to treat this acutely so I'm struggling with exposing the reality it may be chronic.
Logistically we are on opposite side of the US and he in a location which does not have great health care options. This was part of our frustration in even getting a diagnosis.
How are you managing now? I believe your post for the pain rehab program at Mayo was in 2020.
Curious to hear if you are trying any treatments at all? I so appreciate you responding and the hope and positive energy you are present. Thank you!

@vinran Hi Vince. How frustrating to have foot neuropathy after TKR, I'm sorry to hear about that unwanted souvenir. Congratulations though on having a positive attitude for yourself despite.

I'm curious, are you aware of Central Sensitization Syndrome and how it relates to neuropathy? You may find it interesting.

What strategies are you using to help foot symptoms while you wait through these next 6 months for more testing?

I follow the dietary issues which I did anyway
and exercise every other day as prescribed by walking or the
Recumbent bike.
No, Not sure how that CCS would really help though?
Thx

@vinran
I only throw CSS out there because many folks are not familiar with it. CSS explains the process the central nervous system goes through when upregulated from a number of causes such as surgery. It won't necessarily help but does help to explain how a condition becomes chronic. Food for thought, that's all

Keep on, keeping on Vince! Continued healing is wished for you. Will you keep us updated on your progress and share any tips you find helpful?

PS: A recumbent bike is awesome on the joints. I love mine!

Thank you
I should take a closer look which I will do
Appreciate it
Vince

As a loving grandma too, try to look objectively at your son’s behavior with your grandson and (if he has) “a significant other”. My son (40) has anxiety/depression issues and before he went on meds, he was often angry, yelling, frustrated, irritable- at his children, wife, slow servers, drivers of other cars, etc. With meds (refused counseling), life for all of them is MUCH better. If this is happening in his house, maybe he’ll listen to you as to the effect of his behavior on the kids and his wife/SO.
Last thought- I’ve been thinking about this a lot- we know COVID is a virus that also attacks nerves. We know other viruses cause nerve damage (Guillain Barre, Epstein Barr). We know COVID infection, especially in younger people, can be very mild and that Long COVID (in mild cases too) can develop many months after the initial infection. This possibility may bring him a little comfort, rather than thinking the PN appeared “out of the blue”.

Hello @lubelle - You're welcome! Being your son is in the early stages of his neuropathy diagnosis, I completely understand how some of the info I provided could be scary. I'm sorry for that, and in no way meant to alarm you. Not having a known cause is frustrating, when it comes to treatment. In some cases, nerves have the ability to regenerate over time, that would be a hope.

The info I provided you earlier can be tools to keep in your back pocket. I like to inform folks not to scare them, but to educate because I wish someone had offered me more. That's why I came back to Connect after my rehabilitation program, to help. I get a little overzealous sometimes out of passion.

I am managing fine now, thank you for asking. I've come to accept my chronic condition and have learned to manage using the many life-changing tools taught at Mayo's PRC. There are no longer "treatments" as I have been there, done that and say good riddance to what never worked.

It's a journey, and my best advice to your son is to stay informed about his health and condition, learn as much as possible, and be his best advocate. Remaining calm and taking care of emotional and behavior needs is important as he navigates the future. There are many good telehealth services for this. Also, proper nutrition and exercise is vital.

A while back I found this helpful book about SFN. It was collaborated on with my personal neurologist from NY, Mayo doctors and others. It's pretty cheap on Amazon. Here's a link:
https://www.amazon.com/Small-Nerves-Big-Problems-Comprehensive/dp/B07K6Z1YCN/ref=sr_1_1?crid=2FFDZ6WE8K9VV&keywords=small+fiber+neuropathy+book&qid=1654960941&sprefix=small+fiber+neuropathy+book%2Caps%2C996&sr=8-1
And here is a discussion about the book and other helpful resources:

- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-book/

Connect is here to help, support and provide encouragement during challenges for all along the way. Do you mind keeping us updated on your son's progress?

Wishing you all the best.

Thank you centre for your caring response. My son is the stay at home Dad and loves doing entrepreneur businesses. He sold his last business to eliminate stress and anxiety as it was tipping the charts for him but the relaxing was boring, and boring was not good for his mental health. He runs at a high pace naturally and needs that rush of building a business, but it's a slippery slope for him as it ends up giving him anxiety again. My son is a great Dad but when the anxiety hits, so does depression and frustration. Meds (benzos, etc.) absolutely made this worse for him and the more they prescribed, the worse the moods and depression. He fought back by going plant based diet and family support. He tried several counselors and he felt they offered very little help. These were suppose to be very skilled counselors dealing with depression and anxiety. After $1000's of dollars on that, he gave up on the counseling. He attends church and is trying to strength from his religion, but sometimes can't attend because of the anxiety and pain. It's just overall difficult and being across the US doesn't help as his larger support system is not available. His wife is wonderful and a great Mom, but works 60 hours a week as the main provider. We do what we can but we are on retired income so don't have endless funds to travel back and forth. And it's hard to travel with a toddler 15 hours door to door. My son is working now with a Dr in San Diego trying some supplement but I try not to ask too many questions right now and instead let him do the talking. Again, thank you for thoughts and opinions - I hope your son and family are doing well and finding whatever works for them is great!

You have already been so incredibly helpful and I so appreciate your encouragement. I am going to purchase the book and continue to learn more. I will most definitely continue to update on his progress. I am still naïve but continue to hope to find "something" that will provide true relief. He will be visiting in August for 3 weeks and I hope to be more educated by then on SFN. Are you involved in any new treatments at all? I read about VM202 - a gene therapy that is proving to be positive for regenerating nerves. Thank you again for your encouragement and being a volunteer. I feel very powerless as his advocate, but with all of this information, I hope to regain some sense of some control for us both. Sincerely thank you!

@lubelle You're welcome! Thank you for your kind words. I'm happy to help as best I can.

No, I'm not involved in any new SFN treatments or aware of VM202. I would however like to introduce you to two of my friends, and fellow mentors, who oversee the Neuropathy group more-so than myself. Meet John @johnbishop and Chris @artscaping. Each are respectfully knowledgeable about SFN and may bring something to the table for you as you navigate SFN and being supportive to your son as he experiences this unknown territory.

It's awesome that he will come visit in August for 3 weeks! I can imagine that makes you very happy. Again, you're so welcome. Reach out anytime, I'm typically around. And remember, Mama's never lose their powers altogether, we rise to the occasion and be Mothers... loving, supportive, encouraging, motivating. You will not lose your Superpower for your son. Hang in there.