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← Return to Neuropathy after TKR: I'm 68 and fearful of future
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Neuropathy after TKR: I'm 68 and fearful of future
Neuropathy | Last Active: Oct 22, 2023 | Replies (112)Comment receiving replies
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!
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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.