Thanks for the information. I am on 4mg twice per day pills. I would rather use a patch. I will be on Medicare in October and I think I get much better coverage for the patches than my current insurance. It is so hard to find decent doctors that will prescribe buprenorphine. All the current laws do is make people have to go to disreputable doctors to get the medicine they need.
@ess77. Gave up on the Lyrica. After 2 days could not handle any more of the dizziness. Almost fell a few times and could not function that well. Could not even work on my canes. Cleared up and back to normal, such as it is! Shingles almost cleared up and can tolerate the rest of the pain. Beautiful day today in Tampa, sunny but hot. Working on my cane, going to have another good meal then back to Dade City tomorrow. Wishing you the best of everything and thanks for being there.
yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer
yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer
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?
yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer
@jimmy 370
Im so sorry you are having to deal with is and still working. I dont know your financial situation, but can you not retire on social security and you could still work part time.
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?
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.
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.
@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.
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.
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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Thanks for the information. I am on 4mg twice per day pills. I would rather use a patch. I will be on Medicare in October and I think I get much better coverage for the patches than my current insurance. It is so hard to find decent doctors that will prescribe buprenorphine. All the current laws do is make people have to go to disreputable doctors to get the medicine they need.
@ess77. Gave up on the Lyrica. After 2 days could not handle any more of the dizziness. Almost fell a few times and could not function that well. Could not even work on my canes. Cleared up and back to normal, such as it is! Shingles almost cleared up and can tolerate the rest of the pain. Beautiful day today in Tampa, sunny but hot. Working on my cane, going to have another good meal then back to Dade City tomorrow. Wishing you the best of everything and thanks for being there.
Yes!!!! It’s awful!!!!! Having trouble walking my feet burn so bad!
yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer
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?
That’s what I do, break down and start crying! I can’t take no more pain! I’m still working, can’t afford to retire! It’s awful!
@jimmy 370
Im so sorry you are having to deal with is and still working. I dont know your financial situation, but can you not retire on social security and you could still work part time.
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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1 Reaction@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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2 ReactionsHave 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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