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Charcot-Marie-Tooth disease: Surgery needed after SFN diagnosis

Posted by melodyw425 @melodyw425, Nov 27, 2025

Hello, I was diagnosed with small fiber neuropathy few months ago and my sister also has CMT. I am still waiting on my referral to Dr. Klein. He is to booked out for me to get in with him. I am wondering if anyone here knows of a surgeon that is familiar with this disease. Thank you

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dlydailyhope | @dlydailyhope | Nov 29, 2025
In reply to @melodyw425 "Thank you so much for sharing all of that — I’m really sorry you’ve been through..." + (show)
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Thank you so much for sharing all of that — I’m really sorry you’ve been through so much. I haven’t had my entire spine looked at yet, only my cervical area, so I don’t have a full picture of what’s going on. I also have hip dysplasia, and I’ve been dealing with a lot of symptoms that don’t seem to have one clear source yet.

My current symptoms include:
• Worsening neck pain and stiffness
• Upper back and shoulder pain
• Numbness/tingling and burning sensations
• Weakness and heaviness in my arms and legs
• Balance issues and feeling unsteady
• Bladder changes and pelvic floor issues
• GI issues
• Headaches
• Swollen glands, circulation issues (Raynaud’s), and other autonomic symptoms
• Fatigue and feeling “off”
• And I’m extremely hypersensitive to medications and even touch, which makes symptom management really challenging

I’m still trying to figure out whether these symptoms are coming from my spine, nerves, or a combination of things. Hoping to get the rest of my spine evaluated soon so I can finally get some answers.

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@melodyw425
Based upon my experience with spine issues and surgeries (I am a 56 year old female) and your list from symptoms, my guess is many of your symptoms are tied to your cervical spine compression and possibly lumbar. If your spinal cord is being compressed and causing symptoms, it is urgent you get to the bottom of the cause and get treatment options. Cervical spinal cord damage can become permanent and when you start to get bladder issues, it is serious and more advanced and time is of the essence to prevent permanent damage and progression of myelopathy.

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melodyw425 | @melodyw425 | Jan 9 10:16am

I was diagnosed with small fiber neuropathy with no known cause. I am hyper sensitive to medication and touch. I do have hereditary charcuterie Marie tooth disease in my family. I am waiting for a consult with Dr Klein to run hereditary test. As of right now I am facing a surgery for fusions of C5 -7 due to pinched nerves. I have a second opinion with Dr. Scott Swasey at Mayo in Rochester.
Has anyone worked with him or been in my type of situation?

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debbiehirsch | @debbiehirsch | Jan 10 7:04am
In reply to @melodyw425 "I was diagnosed with small fiber neuropathy with no known cause. I am hyper sensitive to..." + (show)
Profile picture for melodyw425 @melodyw425

I was diagnosed with small fiber neuropathy with no known cause. I am hyper sensitive to medication and touch. I do have hereditary charcuterie Marie tooth disease in my family. I am waiting for a consult with Dr Klein to run hereditary test. As of right now I am facing a surgery for fusions of C5 -7 due to pinched nerves. I have a second opinion with Dr. Scott Swasey at Mayo in Rochester.
Has anyone worked with him or been in my type of situation?

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I had a cervical fusion which helped my arms and hands but still have PN in my feet and legs. So far it’s been 6 months and no improvement in my legs. Cymbalta and lyrica does help.

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John, Volunteer Mentor | @johnbishop | Jan 12 7:32am
In reply to @melodyw425 "I was diagnosed with small fiber neuropathy with no known cause. I am hyper sensitive to..." + (show)
Profile picture for melodyw425 @melodyw425

I was diagnosed with small fiber neuropathy with no known cause. I am hyper sensitive to medication and touch. I do have hereditary charcuterie Marie tooth disease in my family. I am waiting for a consult with Dr Klein to run hereditary test. As of right now I am facing a surgery for fusions of C5 -7 due to pinched nerves. I have a second opinion with Dr. Scott Swasey at Mayo in Rochester.
Has anyone worked with him or been in my type of situation?

Jump to this post

Hello @melodyw425, You will notice that we merged your discussion with another discussion you started in another support group and changed the title to better reflect the topic of the discussion. We also added the discussion to the Brain & Nervous System group. If you click the link below it will take you to the beginning of the discussion:
-- Charcot-Marie-Tooth disease: Surgery needed after SFN diagnosis: https://connect.mayoclinic.org/discussion/surgery-needed-after-sfn-diagnosis/

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