Adhesive Arachnoiditis & the Effects on Walking

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.

BTW 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.

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.

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

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

I'm in sw va. It's a small town. Coal was here bur most are out of business now. Lots left wo jobs. It's sad. I pray for you Archie. Hope you feel better. I had a rough night last night. It was rough. Could get in a position that I vould relax my pain to sleep.
There was a huge one on my property too but it got cut bc it was top heavy. Scary at times.

I have that fear also of being back in the wheelchair. I've noticed I can't get my back bone near my butt to relax at night to sleep , any suggestions ? I also have been waking up to have to lift my left leg with my hands to get it out of bed while sitting til I get circulation back in it to get up. It's like lifting a dead weight. These new symptoms are worrying me bc I remember these from before I had surgery . If any one knows of ways to relieve the pain in this area to sleep , even lying on my sides isn't relieving it , it would be greatly appreciated. Thank you Sherry.

Archie , yes I have in the past but lately I try to sleep in center of bed just for that reason knowing how that felt waking up to that feeling. I feel like I am sleeping on a board. Just got a new matress and bed to downsize from a king but the queen is great size that I can get my walker right up beside bed and it more room for movement. I sleep with numerous pillows to put between my legs and support my back and shoulders . I'm sure you can relate , I can't take muscle relaxers due to so much weakness. I'd be afraid of falling , and breaking something besides my foot ( 4 bones ,but supposedly healed) it still gives me arch pain.
I have slept with those doughnut pillows only it's painful in my lumbar.
Yesterday my good right leg was showing numbness and and couldn't take a step but thank God I seen it wasn't moving before I went forward or would have been in floor face first. I just started to get up and looked down, it wasn't moving as hard as I tried , I'm really paying attention at all times bc just bc you think it's moving , it may not be due to those signals getting lost in translation to my feet.