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Surgery and SFN

Neuropathy | Last Active: 1 day ago | Replies (8)

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@bensdf

I was diagnosed with SNF within the last year per skin biopsy.and I probably have had it for maybe 20 years without knowing. Been to every doctor imaginable had every procedure Started with chronic muscle pain in my left mid back which caused me to retire early.I’ve had dry mouth for years, and my feet feel like leather on the bottom. i’ve had problems with my bowels for years and I kept wondering why I didn’t sweat when I was hot and now I’ve developed temperature irregularities and I can no longer stand to wear any clothes when I go to bed at night and I am cold in the daytime and hot at night when I go to bed. I’m telling you all this because those are just some the symptoms that I’ve been struggling with. I’ve had surgery done on my Feet 4 times. I’ve had a shoulder repair. I’ve never had any pain with any of my surgeries.. I had a large piece of wood stuck in my finger. I pulled it out and didn’t feel Anything. I’ve also had an inspire neurostimulator placed in my chest I never had any pain post recovery. The worst thing was I have an intolerance for anesthesia. I’m getting ready to have total Shoulder replacement done and a total knee replacement. . . The worst thing was I have an intolerance for anesthesia .I am hoping that I don’t have any pain with either of those., I have written to Mayo clinic twice about my issues and I also have chronic regional pain syndrome and I was turned down twice by the facility. Not sure why they don’t give you a reason if they did maybe that would help I’ve known of other people who had lesser issues than myself and they got in right away , so I’m not exactly sure why I was turned down twice. But just to let you know, I made very speedy recovery on all of my surgeries so hang in there!

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Replies to "I was diagnosed with SNF within the last year per skin biopsy.and I probably have had..."

Welcome @bensdf, Thank you for sharing your journey with neuropathy and the different surgeries that you have had. I think it can sometimes be difficult to get an appointment at Mayo due to the shear number of patients applying and the limited number of appointments that are available. I wouldn’t give up. Have you tried getting a referral from your doctor or making an appointment yourself?

I’ve been turned down as well and felt even more discouraged and depressed. Our family has a long history of being treated at Mayo and was hoping I could have other options rather than an anti-epileptic and amitriptyline, either in addition to or instead of. Possibly something along the lines of neuro modulation. I wish they would offer virtual visits to individuals which at least could address dietary, supplement, advice on how to keep this from progressing, and specific exercise concerns/recommendations for those diagnosed with idiopathic small fiber neuropathy; however, if Mayo neurology turns you down, no other department will see you, either in person or virurtual, such as integrative medicine. It feels like those of us with this distressing condition have to fight not only the pain and depression, but fight for appointments and treatment options tailored to us as individuals. For a condition affecting 30 million Americans, there is a sad lack of funding or interest in PN. It may not literally take your life but it can take your life in many other ways.