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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

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@johnbishop

Hello @zailey, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear you are in pain and having trouble walking. I read your previous post in the Anyone been diagnosed with arachnoiditis after spine surgery? discussion here: https://connect.mayoclinic.org/comment/601439/. Are you able to share a little more about your diagnosis and your symptoms and any treatments you are on?

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Replies to "Hello @zailey, Welcome to Connect, an online community where patients and caregivers share their experiences, find..."

Hello @johnbishop
Thanks for your reply. 21 yr ago I went thru a 13 hr surgery at Vanderbilt hospital to remove a foot long tumor that was attached to my lower spinal cord and all the sciatic nerves, had part of bone that covers spinal cord removed plus 4 disc removed. Dr said they had to hand pick tumor off the nerves and then washed all the nerves and put back so all of my nerves are displaced and recent MRIs show nerves stuck together and MRI shows I have arachnoiditis.. I was on extensive therapy for 6 month after my surgery and could not walk for first yr and also could not set up due to nerve pain.. was in hospital bed at home for over a year. The nerve pain from waist down to end of my toes was like being on fire. At times I did not want to live. Was sent to Pain Clinic and on oxytocin for approx 10 yr. 80 mg 3 X day, I started decreasing the mg of oxycontin little at a time until I was off and now Im on 10 mg 0f oxycodone 4 X day plus gabapentin 3 X day.. I have severe neuropathy and restless leg. I take 2mg of pramipexole for restless leg but sometimes it may take an hour or longer for the restless legs to calm down and the same time my legs and feet are on fire so I just sit or walk floors and cry..I have seen different Neurosurgeons in nearby city of Knoxville TN and they said they could do nothing to help and said they would not touch my back. So I have lived the past 21 yrs in pain but I do thank God for being able to walk again and just to set at my dinning room window every morning and watch the sunrise over the Great Smoky Mountains. Oh by the way I will be reaching the age of 70, this yr.