Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@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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@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/

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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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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.

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Has the Mayo clinic cracked the code for neuropathy

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Hello @biro62, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Ah, the question that everyone wants to know what the answer is. A lot of us have shared our neuropathy journey in another discussion which may be a good place for you to start looking what experiences others have shared.

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

Can you share a little more about your neuropathy symptoms and diagnosis?

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Hi. I have peripheral neuropathy from a spinal surgery 4 weeks ago. I have severe pain in both feet now. Can't tolerate anthing touching my feet. Sheets, sox. Nothing! Opioids only do so much. Can't wear shoes, so don't go far. Looking for insight.

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@mrscurious

Hi. I have peripheral neuropathy from a spinal surgery 4 weeks ago. I have severe pain in both feet now. Can't tolerate anthing touching my feet. Sheets, sox. Nothing! Opioids only do so much. Can't wear shoes, so don't go far. Looking for insight.

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Hello @mrscurious, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Compressed or pinched nerves in the spinal cord can cause neuropathic pain and other symptoms. Since your spinal surgery is recent, have you discussed your symptoms with your surgeon to see if there is anything additional they can do?

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@johnbishop

Hello @mrscurious, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Compressed or pinched nerves in the spinal cord can cause neuropathic pain and other symptoms. Since your spinal surgery is recent, have you discussed your symptoms with your surgeon to see if there is anything additional they can do?

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Hi @johnbishop I went to my surgeon this morning. He said this is not a pinched nerve in my back, it's more of an issue of my blood vessels not opening and closing as they should. I do have mixed connective tissue disease, but if he calls it peripheral neuropathy, why does he then say it's my blood vessels?

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@mrscurious

Hi @johnbishop I went to my surgeon this morning. He said this is not a pinched nerve in my back, it's more of an issue of my blood vessels not opening and closing as they should. I do have mixed connective tissue disease, but if he calls it peripheral neuropathy, why does he then say it's my blood vessels?

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@mrscurious, There is another discussion you may want to join in since you mentioned you also have mixed connective tissue disease and the surgeon mentioned blood vessels not opening and closing normal. The blood vessels supply the peripheral nerves and if they aren't working it could be Vasculitis. Did your surgeon suggest seeing a pulmonologist?

– Possible MCTD and Vasculitis: https://connect.mayoclinic.org/discussion/possible-mctd-and-vasculitis/

Here's a Mayo Clinic YouTube video that might be helpful – Vasculitis: What you need to know

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@biro62

Has the Mayo clinic cracked the code for neuropathy

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not that I know of. As far as my doctors are concerned IVIG is not an option

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@johnbishop

Hello @biro62, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Ah, the question that everyone wants to know what the answer is. A lot of us have shared our neuropathy journey in another discussion which may be a good place for you to start looking what experiences others have shared.

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

Can you share a little more about your neuropathy symptoms and diagnosis?

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Eight years ago I took a step down and landed on my left heel. It felt like an electric shock going through my body from foot to head. Two days later I couldn’t straighten out my left knee without terrible pain. Had two epidurals and that was gone. Then about 4 to 6 weeks later I started getting tingling in my lower legs and feet. Left leg worse but the right one is catching up. When I am on my feet I hardly know I have it. But when I change planes it starts up again before mostly fading. Going to bed at night is generally terrible but again it fades. Sometimes they feel like they are wrapped tightly. The skin down there feels fairly numb. Down south a few years ago I got bitten by five fire ants on my ankle. No reaction, itching, or festering.
Very unusual if you’ve ever had a bite by one. My back hasn’t been very good for 40 years but it’s a minor problem compared to this

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Have dealing with it since 2017 please I need help

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@martid

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

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Please has anyone gotten the treatment for peripheral neuropathy please I need help

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