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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)

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@zailey

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.

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Replies to "Hello @johnbishop Thanks for your reply. 21 yr ago I went thru a 13 hr surgery..."

@zailey, Thank you for sharing your experience and journey that started with the tumor being removed from your lower spinal cord. I know it has to be extremely difficult for you and the pain can be overwhelming at times. I like your visual of watching the sunrise over the Great Smoky Mountains. It's those little moments of joy that keep us going at times. There is another discussion where members have shared their neuropathy journey and what they have found helpful. You may want to read through the posts to see if you might find something helpful.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Since your neuropathy journey started with a tumor being removed from your lower spine I'm wondering if @jenniferhunter may have some information or suggestions for you. She started a discussion on Myofascial Release Therapy (MFR) which many people have found beneficial - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you ever heard of Dr. Forest Tennant? He started a foundation for people with Arachnoiditis. He has a drug protocol that he recommends. He is retired, but he is very active in the foundation and tries to help people. I don't know if it would help you since you have had it for so long, but it may be worth a try. The problem is finding a doctor that will follow the protocol since it is not accepted by the mainstream medical system. Here is the link http://arachnoiditishope.com/. I am sorry for your pain.