Small Fiber Neuropathy or Carpal Tunnel Syndrome?

Just get the surgery done, it's no big deal. I've had both of my hands done a few years ago.

🙁 you have nothing to loose by waiting - getting more input from medical specialists and patient peers. I know several in your position who are very sorry they let surgeon near them. One surgery turned into multiple surgery’s with result of limited hand/finger function.
You decide and make your best treatment choice. I want only the best outcome for you! Hug…

Thank you for the responses. I don't see a point to getting the surgery if it's not likely to help, especially as I'd be out of work for a while.

Does anyone know of a neuro/hand ortho doctor or website where I could ask a question (about looking at the ultrasound photos) BEFORE scheduling a video appointment or in person visit? I don't want to pay for an appointment if the Dr is also unwilling to look at the ultrasound pics. The online doctors I found don't give the opportunity to ask question before scheduling.

Hi,
In my research, I found this thread. I am a 53 year old female experiencing similar symptoms as you. Have you found any answers? I have gone from one specialist after another and the cost is adding up while I’m still in pain. I’m in desperate need of some answers. Thank you so much!

Hello,

I have similar symptoms as you and have gone to several specialists without any answers. My anxiety is growing and costs are adding up as well as pain. Have you found any answers? I am a 53 year old female in desperate need of answers and healing. Thank you so much.

I have SFN with POTS and CTS (as well as impinged radial and ulnar nerves), all diagnosed with extensive medical testing including sudomotor testing and biopsies. SNF deals with the small fibers of your nerves that control autonomic functions of the body such as pain sensation, temperature regulation, digestion, etc. CTS deals with voluntary motor function. They are different issues, albeit often comorbid.

I've had radial, ulnar, and medial nerve release in my left hand, as well as trigger finger release and De Quervain's tenosynovitis release, all at the same time. I had pain, numbness, and total loss of function in my left hand for over a year leading up to the surgery. The surgery was on May 21st ... today is November 4th, and I've been pain free in that hand ever since the week after surgery. My strength and function is back and getting better each day. I can use my left hand better than my right, and I am not left-dominate. I have no regrets, and plan on having the same surgery (minus radial release) on my right hand in December.

I still have SFN issues, but SFN was not the cause for my hand problems. Yes, SFN can be genetic, it can be caused also by diabetes, thyroid disease, primary dysautonomia, celiac disease, heavy metals poisoning, chronic inflammatory disorders, and a slew of other problems.

My point in all of this: Get the surgery. Why prolong your suffering if you can alleviate it?

My only warning is that I don't recommend having surgery like I did on all 3 of the main nerves in your arm at the same time, because that was the most painful thing I've ever experienced. And I've had two abdominal surgeries, open chest surgery, and grew up with stage 4 endometriosis and uterine fibroids. The pain of this 5-procedure surgery was unbearable for 3 days, but then suddenly stopped though and the freedom from pain since has been worth it... but it wasn't pretty. Thank goodness for nerve blocks is all I'm saying because it hurt even with the block. However, if ALL you need is carpal tunnel release, it should be relatively painless and quick recovery.

If you haven't had a nerve conduction done though, have that done first so they can check all your nerves - if you have more than CTS like I did, the carpal release will not alleviate all of your symptoms in that hand, and you'll feel like you wasted your time and money. I wish you the best in your healing and health.

@leeisme I was only out of work for a week and a half, and that's because I couldn't drive safely without full use of my hand. I work government admin, so there's a lot of fine motor skills and typing skills needed. However, if you do any heavy lifting, you would definitely be out longer than that.

As far as the ultrasound pics, would the offices not know when you call whether or not the doctor looks at them? Have you tried seeing if a PCP would look at them and then refer you to an orthopedic that can help? Have you had a nerve conduction study done? That's usually a better indicator of nerve compression than ultrasound.

@dbamos1945 Actually, waiting can cause permanent nerve damage and sensitivity as the nerves become more compressed over time. The increasing swelling can also put pressure on surrounding tendon sheaths which can lead to requiring tendon release surgery as well. So, it's crucial for people to get evaluated as quickly as possible when experiencing symptoms of CTS.

@sunrise11 Have you seen a neurologist for a nerve conduction study? If not, I would start there because it will show definitive evidence of CTS or other nerve compression. Then the neurologist can refer you to an orthopedic that can help. You don't always need to see a hand specialist for something like CTS.

@sunrise11 If you are concerned about small fiber neuropathy issues, I got my diagnosis through an electro-cardiologist specialist. I was referred to him by my neurologist. I was experiencing lots of pain from no known cause as well as other dysfunctions and started with my PCP who referred me to a neurologist who referred me to the electro-cardiologist. The only problems there are that electro-cardiologists are so specialized, it takes some traveling to get to one. Mine was about an hour away, but I'm lucky to live that close to a big city with medical universities, so I lucked out. I hope you can find something like that for evaluation. Ask doctors about "sudomotor testing" - that's what led to the biopsies that gave me my SFN diagnosis.