Surgery needed after SFN diagnosis

Welcome @melodyw425, Sorry I missed your first post in the Small Fiber Neuropathy discussion - https://connect.mayoclinic.org/comment/1391057/. You mentioned you are still waiting for a referral with Dr. Klein but he is booked out. Here is the list of Mayo doctors that specialize in Charcot-Marie-Tooth disease diagnosis and treatment - https://www.mayoclinic.org/diseases-conditions/charcot-marie-tooth-disease/doctors-departments/ddc-20350525. You can select the different departments that treat this condition and then see the different doctors.

You mentioned needing surgery. Do you mind sharing what kind of surgery is needed?

@melodyw425

Small fiber neuropathy (Inhave this) is usually caused by diabetes, vitamin deficiency/toxicity, alcoholism, smoking, chemotherapy, etc. it is nerve damage that needs the root cause treated. There is no surgery for this as it is the small nerve fibers on skin/organs that are damaged. There really is not specific treatment for SFN other than pain medications, neuropathy supplements, topical creams, etc.

You show a picture of your cervical spine. Were you diagnosed with spine compression of nerves/nerve roots and/or spinal cord causing your symptoms? You would want to work with an orthopedic spine specialist or neurosurgeon to determine best options for diagnosis/treatment (EMG/nerve conduction study, physical therapy, spine injections, surgery).

@melodyw425

How was your sister diagnosed with and treated for CMT? I am not aware of a surgery that helps with this genetic condition. Are you seeking specific surgery for a complication from CMT or injury due to having this nerve damage?

@dlydailyhope
I had a previous injury over 10 years ago that caused a bulge disc in C5. We left it alone in hopes it would heal and now it has deteriorated 2 to 3 disc and caused nerver impingement. I have No Known cause for the small fiber neuropathy. I do not drink do not smoke. No other autoimmune disorders. I have not checked for genetic markers yet, but my sister has hereditary CMT.

@dlydailyhope my sister has CMT. She Has never had surgery.

@melodyw425
My neck injury is not a result or a symptom from small fiber, neuropathy or CMT from my knowledge..

@melodyw425

I have cervical and lumbar spinal stenosis. I have had 2 surgeries on cervical spine (C5-C6 and C6-C7) and 1 on lumbar spine (L3-L5). I may need another cervical and lumbar spine surgery (pain in neck 2 months after cervical surgery so something may have shifted and severe stenosis L2-L3).

Have you read your most recent MRI of your cervical spine? Compression or flattening of your spinal cord/nerve roots can cause many symptoms below your neck. Mine caused daily headaches, arm/neck/shoulder pain and weakness/numbness, bladder control issues and difficulty walking. I was diagnosed with degenerative cervical myelopathy which is spinal cord flattening/compression injury and have some permanent damage due to delayed diagnosis.

What are your current symptoms?

@melodyw425
My small fiber neuropathy is also idiopathic with no known cause.

If you have spinal compression, that would cause or worsen your neurological symptoms.

Yes that is what we have figured out. When I had the Cortizone shot in my neck, it amplified all my symptoms by 1000. It took me over two weeks and I’m still recovering from that Cortizone shot. The orthopedic surgeon that I was seeing agrees that this is setting off the neuropathy, but he’s not familiar with this disease and I’m also hyper sensitive to medication and have been pass out from the pain.

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.