I understand how you feel. I can't sit long I can't sleep long I can't find positions to get into. It hurts but I've had it si long I'm grateful for days I'm able to go out somewhere or just do laundry or cook. I wish Dr's would understand we aren't drug seeking we are just trying to live w a quality of life WE have to live with. I'm grateful to have a home a roof over my head running water and a dog I adore. She has learned to move with me as I go thru my home in case I fall or get off balance she is my light. I wish I could be outside with her more. It's cold here in winter though. If you need to talk I've had this so long w no diagnosis that I even thought I was crazy. My family didn't know I had stopped drinking years ago when they knew I was still stumbling falling now on a walker. I will answer anything I can but I'm trying to find a specialist to help me. If anyone knows of a Dr that specializes in this Arachnoiditis please share information bc everyone would love and be blessed by answers to help us deal w this terrible burden but know and be grateful for good things.
I'm so sorry that you're dealing with Arachnoiditis. It is definately a challenge - 24/7, but it sounds like you have a positive "attitude of gratitude " that keeps you going and helps you see beyond the pain and limitations and to embrace so much that is positive in your daily life. Unfortunately, I have not been able to find any doctor that has been able to help me in any way. Every
doctor / medical facility I have consulted with has reviewed my records, seen or talked with me and then expressed their apologies for not having anything to offer me, that I haven't already tried. You will be in imy prayers each day.
mata
Mine began in 1972 with possibly an X-ray test with dissipating dye injected directly into suspect disc and/or subsequent laminectomy (L2). Surgeon left a small metal “clip” marking the place arachnoiditis starts. Recent MRI shows clip moved to sacral area…likely from a fairly recent MRI for a different issue. My walking is getting worse rapidly…I used to walk 6 miles a day!
What therapies have you found that help!
Hi and welcome—
Me too. My AA started in 1978 with an allergic reaction to OIL-based pantopaque contrast fluid for myelograms— no MRI back then! The industry changed to WATER-based pantopaque fluid in late 1978, but the damage was already done. I miss walking most of all. We had a large farm with a 400 year old Oak tree. I can’t get there anymore. Recently I’ve had my pump output increased 15%, caudal injections and cervical spine injections and the triple approach has helped a lot. I feel better and more hopeful than I have in years. Next step is to increase my exercise (stationary bike) and get in better shape, build strength and flexibility. Good luck in your long journey. Seems like you’re focusing on the right things! Archie
Hi and welcome—
Me too. My AA started in 1978 with an allergic reaction to OIL-based pantopaque contrast fluid for myelograms— no MRI back then! The industry changed to WATER-based pantopaque fluid in late 1978, but the damage was already done. I miss walking most of all. We had a large farm with a 400 year old Oak tree. I can’t get there anymore. Recently I’ve had my pump output increased 15%, caudal injections and cervical spine injections and the triple approach has helped a lot. I feel better and more hopeful than I have in years. Next step is to increase my exercise (stationary bike) and get in better shape, build strength and flexibility. Good luck in your long journey. Seems like you’re focusing on the right things! Archie
I've stopped PT but I suppose I need to go back. I am thinking of that tree. You gave it such as a visual give me a smile. Yes a tree. Thank you. I hope you get to walk to that tree again. If not there are always alternative ways of travel.
Thank you for that.
I miss going into the woods watching wildlife and such things people take for granted. I watch TV seeing people do things I know I will never do but as my surgeon told me when I was 16 years old , your never going to be a ballerina ! I feel grateful for the days I've had and want to say thank you for sharing this. Good luck to you. I'm on my own journey of acceptance and not giving up but I'm going to fight as long as I can. As some days are harder than others. I also grew up on a farm . Not that big but good memories.
Hi and welcome—
Me too. My AA started in 1978 with an allergic reaction to OIL-based pantopaque contrast fluid for myelograms— no MRI back then! The industry changed to WATER-based pantopaque fluid in late 1978, but the damage was already done. I miss walking most of all. We had a large farm with a 400 year old Oak tree. I can’t get there anymore. Recently I’ve had my pump output increased 15%, caudal injections and cervical spine injections and the triple approach has helped a lot. I feel better and more hopeful than I have in years. Next step is to increase my exercise (stationary bike) and get in better shape, build strength and flexibility. Good luck in your long journey. Seems like you’re focusing on the right things! Archie
I too, have severe adhesive arachnoiditis. I am also fused from C3 thru my sacrum. I am now having severe, unrelenting pain. I am a retired RN. I live in a suburb of Phoenix. I have tried for years to get a doctor to help , with no success. It takes about 5 or more months to even get an appointment with a specialist. Got a neurologist, met with him. He basically said there are no treatments, except steroids. He's given me Medrol dose pacs & valium. When the pain became overwhelming, he said i need pain management. Have been going to pain management for years ( it's a joke, a mill) I am now looking into getting a pain pump. I have all Dr Tennant's protocols & no one is interested in even looking at them. Think i am past this anyways, as i can't do most of what he suggests. It's beyond discouraging & no one even knows, or is familiar with this condition & they don't understand the severity of the pain. I am very depressed & feel hopeless. I can barely leave my apartment & have no more life. Sorry to be so discouraging. Would love to have someone to talk to. Lauren Seavertson
My heart goes out to you - such a painful condition. I had an ACDF C4-C7 in October ‘22. Surgery was successful but I deal with other issues resulting in pain. Has anyone suggested Low Dose Naltrexone? I’m working with a Rheumatologist that has prescribed it for severe osteoarthritis. It has really helped reduce the inflammation and pain.
I too, have severe adhesive arachnoiditis. I am also fused from C3 thru my sacrum. I am now having severe, unrelenting pain. I am a retired RN. I live in a suburb of Phoenix. I have tried for years to get a doctor to help , with no success. It takes about 5 or more months to even get an appointment with a specialist. Got a neurologist, met with him. He basically said there are no treatments, except steroids. He's given me Medrol dose pacs & valium. When the pain became overwhelming, he said i need pain management. Have been going to pain management for years ( it's a joke, a mill) I am now looking into getting a pain pump. I have all Dr Tennant's protocols & no one is interested in even looking at them. Think i am past this anyways, as i can't do most of what he suggests. It's beyond discouraging & no one even knows, or is familiar with this condition & they don't understand the severity of the pain. I am very depressed & feel hopeless. I can barely leave my apartment & have no more life. Sorry to be so discouraging. Would love to have someone to talk to. Lauren Seavertson
Hi Lauren-Archie here… I just want you to know that you are heard— I hear you, your hopes and your desperate moments… many of us have been there. As an RN, you should be pretty good at being your best advocate. My experience is that doctors are not indifferent or arbitrary, they’re just busy. Your challenge is to get attention. There doesn’t seem to be any doubt that you are suffering, how can you be ignored. You speak the language— interspaces, foremen, pedicle, clumping, intrathecal space, dermatomes and so on. Use your expertise! I’m in your corner! Go for it.
Articulate what you want
Outline a plan to get there
Logically organize your team
List the outcomes you want
Get technology and treatment that will achieve your goals.
Good luck- Archie
Hi and welcome—
Me too. My AA started in 1978 with an allergic reaction to OIL-based pantopaque contrast fluid for myelograms— no MRI back then! The industry changed to WATER-based pantopaque fluid in late 1978, but the damage was already done. I miss walking most of all. We had a large farm with a 400 year old Oak tree. I can’t get there anymore. Recently I’ve had my pump output increased 15%, caudal injections and cervical spine injections and the triple approach has helped a lot. I feel better and more hopeful than I have in years. Next step is to increase my exercise (stationary bike) and get in better shape, build strength and flexibility. Good luck in your long journey. Seems like you’re focusing on the right things! Archie
Thank you for responding. I’m rooting for you and your efforts to get back to walking. The irony is that walking will help us…if only! This site has opened my eyes to so much information I haven’t had all these years. I’ve just learned about the progressiveness of AA and why walking and balance are becoming more difficult. I’ve always enjoyed early morning walks, observing nature and getting good exercise, and would like to continue. My injury occurred both during a test to determine which disc was suspect (disc-gram with disappating dye, you lie over a bridge on the X-ray table) and during surgery. The surgeon left a metal clip in my back to indicate where the injury starts. The new myelogram shows it and the damage very clearly. I had refused myelograms for years due to the prolonged and difficult recovery from surgery, so it was about 15 years before I understood why I have the pain, etc. It’s just now that I can understand the whole picture, including understanding just how close I came to paraplegia. I’m so grateful for this site and being able to talk with people who understand! I’ve also learned to be grateful for what I can do, that there are others who struggle with much more difficult issues.
Hi Lauren-Archie here… I just want you to know that you are heard— I hear you, your hopes and your desperate moments… many of us have been there. As an RN, you should be pretty good at being your best advocate. My experience is that doctors are not indifferent or arbitrary, they’re just busy. Your challenge is to get attention. There doesn’t seem to be any doubt that you are suffering, how can you be ignored. You speak the language— interspaces, foremen, pedicle, clumping, intrathecal space, dermatomes and so on. Use your expertise! I’m in your corner! Go for it.
Articulate what you want
Outline a plan to get there
Logically organize your team
List the outcomes you want
Get technology and treatment that will achieve your goals.
Good luck- Archie
Thanks, Can't even get an appointment. here, in AZ, lots snowbirds. I am in pain management, but they have many restrictions on prescribing opiates I am now wearing a patch, Bupromorine, but i can hardly feel my legs &it's neuropathic pain. Doctors don't deal with AA, & as u said, very busy. I now have brain fog, sleep only 4 or 3 hrs a night. My experience as an RN, helps a little, but i only get steroids & valium. Pain, is unrelenting & i know my BP is up from this pain. Doctors like to deal with things they are familiar with, & where they can make a difference. They are largely ignorant about AA & not that interested in helping. U get dumped, & told to go to pain management. I know my experience, is not unique. Have tried for years to get a good treating doc for this condition. I used to be very active, & now i'm in bed2 2 hours a day. Sorry for typos, 3 hrs sleep & have severe pain down both arms
I've had AA for 20 years? it wasn't too bad, until very recently. Unrelenting neuropathic pain. It can affect your ability to walk, causing paraparesis (weakness etc) I am now barely able to walk with a walker & can't feel my legs (for the most part) Exercise is paramount. Staying as active as possible is advised. Most people can walk, but guess i have extreme case. Every day i wake up, some new symptoms & i am scared to death of being back in a wheelchair again. I was paralyzed by MRSA from the neck down 17 years ago. Spent 16 months in hospital & rehab. Now this! I have lost many years of my life & all my savings. Am on Medicare & secondary Medicaid This doesn't help with getting doctors to treat me. AZ is a great state, if u are on Medicaid. Everything medical is free for me, as i am low income. Exercise as much as possible & i hope u remain walking! Lauren
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I'm so sorry that you're dealing with Arachnoiditis. It is definately a challenge - 24/7, but it sounds like you have a positive "attitude of gratitude " that keeps you going and helps you see beyond the pain and limitations and to embrace so much that is positive in your daily life. Unfortunately, I have not been able to find any doctor that has been able to help me in any way. Every
doctor / medical facility I have consulted with has reviewed my records, seen or talked with me and then expressed their apologies for not having anything to offer me, that I haven't already tried. You will be in imy prayers each day.
mata
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2 ReactionsHi and welcome—
Me too. My AA started in 1978 with an allergic reaction to OIL-based pantopaque contrast fluid for myelograms— no MRI back then! The industry changed to WATER-based pantopaque fluid in late 1978, but the damage was already done. I miss walking most of all. We had a large farm with a 400 year old Oak tree. I can’t get there anymore. Recently I’ve had my pump output increased 15%, caudal injections and cervical spine injections and the triple approach has helped a lot. I feel better and more hopeful than I have in years. Next step is to increase my exercise (stationary bike) and get in better shape, build strength and flexibility. Good luck in your long journey. Seems like you’re focusing on the right things! Archie
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Helpful -
Hug
4 ReactionsI've stopped PT but I suppose I need to go back. I am thinking of that tree. You gave it such as a visual give me a smile. Yes a tree. Thank you. I hope you get to walk to that tree again. If not there are always alternative ways of travel.
Thank you for that.
I miss going into the woods watching wildlife and such things people take for granted. I watch TV seeing people do things I know I will never do but as my surgeon told me when I was 16 years old , your never going to be a ballerina ! I feel grateful for the days I've had and want to say thank you for sharing this. Good luck to you. I'm on my own journey of acceptance and not giving up but I'm going to fight as long as I can. As some days are harder than others. I also grew up on a farm . Not that big but good memories.
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Hug
1 ReactionBTW I'm Sherry.
My heart goes out to you - such a painful condition. I had an ACDF C4-C7 in October ‘22. Surgery was successful but I deal with other issues resulting in pain. Has anyone suggested Low Dose Naltrexone? I’m working with a Rheumatologist that has prescribed it for severe osteoarthritis. It has really helped reduce the inflammation and pain.
-
Like -
Helpful -
Hug
3 ReactionsHi Lauren-Archie here… I just want you to know that you are heard— I hear you, your hopes and your desperate moments… many of us have been there. As an RN, you should be pretty good at being your best advocate. My experience is that doctors are not indifferent or arbitrary, they’re just busy. Your challenge is to get attention. There doesn’t seem to be any doubt that you are suffering, how can you be ignored. You speak the language— interspaces, foremen, pedicle, clumping, intrathecal space, dermatomes and so on. Use your expertise! I’m in your corner! Go for it.
Articulate what you want
Outline a plan to get there
Logically organize your team
List the outcomes you want
Get technology and treatment that will achieve your goals.
Good luck- Archie
-
Like -
Helpful -
Hug
3 ReactionsThank you for responding. I’m rooting for you and your efforts to get back to walking. The irony is that walking will help us…if only! This site has opened my eyes to so much information I haven’t had all these years. I’ve just learned about the progressiveness of AA and why walking and balance are becoming more difficult. I’ve always enjoyed early morning walks, observing nature and getting good exercise, and would like to continue. My injury occurred both during a test to determine which disc was suspect (disc-gram with disappating dye, you lie over a bridge on the X-ray table) and during surgery. The surgeon left a metal clip in my back to indicate where the injury starts. The new myelogram shows it and the damage very clearly. I had refused myelograms for years due to the prolonged and difficult recovery from surgery, so it was about 15 years before I understood why I have the pain, etc. It’s just now that I can understand the whole picture, including understanding just how close I came to paraplegia. I’m so grateful for this site and being able to talk with people who understand! I’ve also learned to be grateful for what I can do, that there are others who struggle with much more difficult issues.
Your situation is the same as mine. I’m just beginning more physical therapy including myofascial release which I’ve found helpful.
Thanks, Can't even get an appointment. here, in AZ, lots snowbirds. I am in pain management, but they have many restrictions on prescribing opiates I am now wearing a patch, Bupromorine, but i can hardly feel my legs &it's neuropathic pain. Doctors don't deal with AA, & as u said, very busy. I now have brain fog, sleep only 4 or 3 hrs a night. My experience as an RN, helps a little, but i only get steroids & valium. Pain, is unrelenting & i know my BP is up from this pain. Doctors like to deal with things they are familiar with, & where they can make a difference. They are largely ignorant about AA & not that interested in helping. U get dumped, & told to go to pain management. I know my experience, is not unique. Have tried for years to get a good treating doc for this condition. I used to be very active, & now i'm in bed2 2 hours a day. Sorry for typos, 3 hrs sleep & have severe pain down both arms
-
Like -
Helpful -
Hug
2 ReactionsI've had AA for 20 years? it wasn't too bad, until very recently. Unrelenting neuropathic pain. It can affect your ability to walk, causing paraparesis (weakness etc) I am now barely able to walk with a walker & can't feel my legs (for the most part) Exercise is paramount. Staying as active as possible is advised. Most people can walk, but guess i have extreme case. Every day i wake up, some new symptoms & i am scared to death of being back in a wheelchair again. I was paralyzed by MRSA from the neck down 17 years ago. Spent 16 months in hospital & rehab. Now this! I have lost many years of my life & all my savings. Am on Medicare & secondary Medicaid This doesn't help with getting doctors to treat me. AZ is a great state, if u are on Medicaid. Everything medical is free for me, as i am low income. Exercise as much as possible & i hope u remain walking! Lauren