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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 13 hours ago | Replies (5972)

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@sallymagint

I've had a number of trauma injuries over 45 years of life which have resulted in some significant nerve damage. Although I've seen many Specialist there has been no specific type of neuropathy diagnosis, although most is peripheral, because there's always been more pressing issues to contend with which steers Investigations in other directions.

I had a spinal injury 25 years ago and fractured 3 vertebrae after a fall on a working holiday in England. At the time although I knew I'd hurt myself I continued to backpack with a 25 kilo backpack around Europe. Hindsights a great thing but when we're young we believe we're infallable. A spinal fusion followed 6mths after I returned home. I suffered nerve damage and I've had 3 dorsal Column stimulators implanted over 20 years to help with nerve pain.
I've had a number of other injuries which resulted in ongoing nerve problems. I broke both ankles (at different times) which were pinned and put in casts. The plaster had to removed with both due to severe nerve pain affecting the external parts of my ankle. I couldn't stand to have anything touch my ankle for at least 6 mths, no shoes, no sheet/blanket and at times even having my foot in water whether it be the shower, bath, pool was excruciating. Lots of desensitisation work to help my alter my bodies response to stimulus of any sort.
I had severe type 2 diabetes for which I was on insulin for over 5 years. I'm happy to say this is now controlled through diet and lifestyle change and I no longer have any medications to treat this.
I have moderate degeneration of thoracic and cervical spine with neuralgia affecting my strength and body's response (over sensitive or sometimes lack of sensation) to stimuli.
I also have a Chiari Malformation which was diagnosed after a head injury. I stood up and became dizzy, fell and was knocked out on the TV cabinet on the way down. It's believed the impact forced my brain through my skull and into my Spinal canal. A previous cranial CT before the accident did not show a Chiari which is how this reasoning was attained. In addition to Chiari it is suspected I have Syringomyelia (Syrinx or cysts on the spinal canal) which affects my strength and alters many sensations sometimes causing intense pain other times resulting in paralysis. The Syrinx if not treated appropriately may continue to cause irreversible damage. Because of my dorsal column stimulator I have been unable to have MRI scans which has meant some diagnosis can not be ascertained. The decision has been reached to remove the device so MRI's can be taken which will happen in the next couple of weeks. I will then fly interstate in Australia to have decompression surgery and possible fusion of cervical spine. They will also decide how to treat the Syrinx. I have facial neuropathy which results in severe facial pain that brings me to the ground it is so severe. In combination with pain I have paralysis in my face, again my face responds in different ways to stimuli.

My team of specialists are somewhat baffled by the complexity of my conditions but they are slowly being able to bring it a together and gain a better understanding of what's going on and why. That's it in a nutshell, there's more to it but these are the basics. Hope this gives a bit of insight

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Replies to "I've had a number of trauma injuries over 45 years of life which have resulted in..."

I feel your pain. Thanks be to God, I've had no broken bones but four fusions and eight knee operations put me in your league of polyneuropathy. I lived on Oxycontin, Lyrica, Baclofen, and Amitriptyline. The side effects of the abuse of Oxy have made life a living hell here in the State of TN. It was bad enough that my GP was forced to discontinue prescribing Oxycontin by my state, but now they are forcing pain clinics to close or jump through a maze of hoops to stay in business. I had a manageable quality of life until May 8th when the State of TN forced the closure of my last pain clinic. I am now on a two-year waiting list just to get into another clinic. All of that time without the Oxycontin that I was living on.

It’s a malady that is certainly not tenuous. Explaining the pain to others is not easy.
I am currently off the usual prescriptions gabapentin, pregabalin etc as they offered no relief.
I do take Alpha Lopoic Acid
with a small degree of help. Additionally, I take 15 mil. of oxycodone at varied doses during the day 5@5am 2.5@ 11-12 and 7.5 @6-7pm
I have found this to ease my pain through the day.
I have seen 2-neurologists providing little value. I will be seeing another that apparently, thinks outside of the box, and is world renown. It will take me 6 months to get an appointment UGH!!
Physical therapy has done nothing. I currently average over 8000 steps a day but although my strength is better my pain persists.
Thank you allowing my loquacious diatribe
It makes me feel not alone
Regards,
Ron
I hope 🙏you find some relief