Thank you. I’ve read about new stimulators that the Cleveland Clinic has been implanting quite recently. I’m so sorry your stimulator failed. You might want to look up the Cleveland Clinic to see if they might have some help for you. I will admit that having someone go back into my spine is very scary for me.
I just read in another post that AA is progressive, which I did not know! It certainly speaks to what I’ve been experiencing.
I’d like to clarify my rebounder comment: I use a stability bar and I pretty much keep my feet on the rebounder or just do steps. I don’t want anyone to think that I’m leaping around with abandon! If I could do that, I wouldn’t be on this chat!
Thank you. I’ve read about new stimulators that the Cleveland Clinic has been implanting quite recently. I’m so sorry your stimulator failed. You might want to look up the Cleveland Clinic to see if they might have some help for you. I will admit that having someone go back into my spine is very scary for me.
Yes. I have went from driving a jeep wrangler w clutch to automatic to no driving and a cane to now a walker. I have fallen several times but I try to keep going. I live in a small town in coal fields that isn't big it's becoming smaller by the day. If you ever need to chat I'm here.
Hello @louisagjafrwi923, welcome to Mayo Clinic Connect. I updated your title some to include the issues around its effect on your walking. You may also be interested in the following discussions on adhesive arachnoiditis:
This topic is of great interest to me. Your experiences, problem, solutions. I welcome it all. I’ve just recently learned what kind of arachnoiditis I have, that it can occur in stages and the specific type. All of this information is new to me, although I’ve had the condition since ‘72. Seems no one wants to talk about it and most gp’s have little experience or knowledge of it.
Yes, I’ve been a member of the AA club since 1978– been a rough road. You must have a local (relatively) medical professional to help you. I’ve educated more Drs than I can count. In the last year, walking has become much more difficult, and we’ve found that AA is PROGRESSIVE! Yes it can get worse. So I’m going through a series of test to titrate the right dosage from my Medtronic intrathecal pump. Keep the faith a keep in touch.
This topic is of great interest to me. Your experiences, problem, solutions. I welcome it all. I’ve just recently learned what kind of arachnoiditis I have, that it can occur in stages and the specific type. All of this information is new to me, although I’ve had the condition since ‘72. Seems no one wants to talk about it and most gp’s have little experience or knowledge of it.
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 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
Have severe adhesive arachnoiditis & fused from C3 thru my sacrum. it can affect walking in most severe cases. My legs are fairly numb, although i have severe leg pain ( and pain down my arms etc) I use a walker & it's getting harder to walk every day & i'm getting more unstable daily & i know i am a fall risk. I cannot move one step without my walker. It is progressive & some people end up in a wheelchair. I hoping i won't be one of them. I was in a wheelchair for 6 years & don't want to go back in one
Have severe adhesive arachnoiditis & fused from C3 thru my sacrum. it can affect walking in most severe cases. My legs are fairly numb, although i have severe leg pain ( and pain down my arms etc) I use a walker & it's getting harder to walk every day & i'm getting more unstable daily & i know i am a fall risk. I cannot move one step without my walker. It is progressive & some people end up in a wheelchair. I hoping i won't be one of them. I was in a wheelchair for 6 years & don't want to go back in one
I also have been in a wheelchair after t1-T12 naturally fusing after a tumor and radiation treatments at age 16 now I'm 56 and I'm using a walker I understand these symptoms bc I've lived with them so long I've grown used to the pain even though on days it's unbearable. I'm sure you have went to hospital ER and they just give you a shot send you home only to have it come back and then your left to cry in bed. Or in living room depending on where you are. I have bladder issues. Often lately bowel problems but I'm still fighting. Finding someday I get decorated of this. I'm so tired of aching and hurting I'm hopeful for a pain pump and maybe get some relief but I have been knocked down to where this is depressing and causes mental anguish on me.
If you need to talk my number is in these messages. Feel free to reach out.
Connect
Connect
Like
Helpful
Hug
Thank you. I’ve read about new stimulators that the Cleveland Clinic has been implanting quite recently. I’m so sorry your stimulator failed. You might want to look up the Cleveland Clinic to see if they might have some help for you. I will admit that having someone go back into my spine is very scary for me.
I just read in another post that AA is progressive, which I did not know! It certainly speaks to what I’ve been experiencing.
I’d like to clarify my rebounder comment: I use a stability bar and I pretty much keep my feet on the rebounder or just do steps. I don’t want anyone to think that I’m leaping around with abandon! If I could do that, I wouldn’t be on this chat!
Thank you for mentioning the Cleveland Clinic. I live in Canada.
-
Like -
Helpful -
Hug
1 ReactionYes. I have went from driving a jeep wrangler w clutch to automatic to no driving and a cane to now a walker. I have fallen several times but I try to keep going. I live in a small town in coal fields that isn't big it's becoming smaller by the day. If you ever need to chat I'm here.
This topic is of great interest to me. Your experiences, problem, solutions. I welcome it all. I’ve just recently learned what kind of arachnoiditis I have, that it can occur in stages and the specific type. All of this information is new to me, although I’ve had the condition since ‘72. Seems no one wants to talk about it and most gp’s have little experience or knowledge of it.
-
Like -
Helpful -
Hug
2 ReactionsI too, just found out that AA can be progressive. Knowing helps me realize I’m not imagining things, but there isn’t much help out there for us.
-
Like -
Helpful -
Hug
1 ReactionI 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 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
-
Like -
Helpful -
Hug
1 ReactionHave severe adhesive arachnoiditis & fused from C3 thru my sacrum. it can affect walking in most severe cases. My legs are fairly numb, although i have severe leg pain ( and pain down my arms etc) I use a walker & it's getting harder to walk every day & i'm getting more unstable daily & i know i am a fall risk. I cannot move one step without my walker. It is progressive & some people end up in a wheelchair. I hoping i won't be one of them. I was in a wheelchair for 6 years & don't want to go back in one
-
Like -
Helpful -
Hug
1 ReactionI also have been in a wheelchair after t1-T12 naturally fusing after a tumor and radiation treatments at age 16 now I'm 56 and I'm using a walker I understand these symptoms bc I've lived with them so long I've grown used to the pain even though on days it's unbearable. I'm sure you have went to hospital ER and they just give you a shot send you home only to have it come back and then your left to cry in bed. Or in living room depending on where you are. I have bladder issues. Often lately bowel problems but I'm still fighting. Finding someday I get decorated of this. I'm so tired of aching and hurting I'm hopeful for a pain pump and maybe get some relief but I have been knocked down to where this is depressing and causes mental anguish on me.
If you need to talk my number is in these messages. Feel free to reach out.