Ohhhh the toes....pain....Ive had all your pains....its awful...agree the nerve pain meds are awful...Im in MS I have the stimulator (which messes with my head) and pain meds is the only thing to help some. But my sister has the stimulator and she loves it
I have heard bad things about our condition and the stimulator. I talked to one person who was cramped into a pretzel the weekend after and they just told her it should work itself out! How can they leave people in this condition?
@bonitabradley8213 I can't believe nothing more can be done but I will never have another nerve block I know when it all went south for me....prayers you have a good pain free or at least less pain kind of day....I get all the time you don't look like anything is wrong....pain is awful and it get worse all the time..as for my stimulator a year later my battery inside me quit working and they had to change it to the otherside too because of were it was laying hurt and when they are going under the skin to make a way for the leads....It's is so ofcthe worst pain you are awake while this rod is being pushed through to the other side .....no words for that pain....I don't use mine much because it messes with my head but my sister has one and it does help some but the amount if meds she is on ...I hope I never will have too....blessings
The only MRI I have had was a month after the Spinal Puncture that caused the AA so I am not sure what is going on with it now or how much it has progressed. Medical is so expensive and they can't do an thing so I just as well save my money.
Hi@@bonitabradley8213 I hope you are doing better. I have AA too, suspected it for many years after doing tons of research, but only got official diagnosis after finding Dr. Tennant. I started with RSD for 30 years, spinal cord stimulator, (don't ever get one implanted) I had mine taken out six years ago. It never helped and I think it did more harm when electric migrated into wrong areas. On top of my RSD I have a complete foot drop, plus the AA and also started with Lupus symptoms probably from all the stress and pain I have been through. Good luck managing your pain. Take care
I forgot to ask you something. When you close your eyes do you start swaying and have terrible balance issues? I have to hold on when I close eyes in shower. Thanks
Thanks for continuing to provide insights into your experience with this disease. Fingers crossed you get some help once your neurology appointment comes around.
Hi Bonita, I found your channel while looking for specialists who understand Arachnoiditis. That is the hardest part of my journey! I was diagnosed in 2001 and like you, I’ve had to figure out practical life changes. It was refreshing and tearful to listen to you, someone who gets it!! I wouldn’t wish this condition on anyone, yet here we are! I’d just love to connect more with you. I’ve joined many a support group, but haven’t found the right one for me. My goal is to live the best life possible!! 🙏😊
Bless you and your husband. I’m a widow and doing this alone is something I would not wish on my worst enemy. It’s a horrible existence.
I’m sure it is. Many don’t have supportive parters, also. I am very blessed.
Ohhhh the toes....pain....Ive had all your pains....its awful...agree the nerve pain meds are awful...Im in MS I have the stimulator (which messes with my head) and pain meds is the only thing to help some. But my sister has the stimulator and she loves it
I have heard bad things about our condition and the stimulator. I talked to one person who was cramped into a pretzel the weekend after and they just told her it should work itself out! How can they leave people in this condition?
@bonitabradley8213 I can't believe nothing more can be done but I will never have another nerve block I know when it all went south for me....prayers you have a good pain free or at least less pain kind of day....I get all the time you don't look like anything is wrong....pain is awful and it get worse all the time..as for my stimulator a year later my battery inside me quit working and they had to change it to the otherside too because of were it was laying hurt and when they are going under the skin to make a way for the leads....It's is so ofcthe worst pain you are awake while this rod is being pushed through to the other side .....no words for that pain....I don't use mine much because it messes with my head but my sister has one and it does help some but the amount if meds she is on ...I hope I never will have too....blessings
@@kathywhitaker1042 I wish you many pain-free days. Thank you for sharing your story.
Hi, did results of your testing show a lot of calcium ossificans throughout your body? Thanks,
The only MRI I have had was a month after the Spinal Puncture that caused the AA so I am not sure what is going on with it now or how much it has progressed. Medical is so expensive and they can't do an thing so I just as well save my money.
Hi@@bonitabradley8213 I hope you are doing better. I have AA too, suspected it for many years after doing tons of research, but only got official diagnosis after finding Dr. Tennant. I started with RSD for 30 years, spinal cord stimulator, (don't ever get one implanted) I had mine taken out six years ago. It never helped and I think it did more harm when electric migrated into wrong areas. On top of my RSD I have a complete foot drop, plus the AA and also started with Lupus symptoms probably from all the stress and pain I have been through. Good luck managing your pain. Take care
I forgot to ask you something. When you close your eyes do you start swaying and have terrible balance issues? I have to hold on when I close eyes in shower. Thanks
Do you get sciatica?
yes, I absolutely do. One side and then the other.
I got a lot burning in my feet and leg cramps . I think I got AA. Not for sure my EMG came back normal
@@joellabrie-ki9bk me too at times
Thanks for continuing to provide insights into your experience with this disease. Fingers crossed you get some help once your neurology appointment comes around.
Thank you for following my story❤️❤️❤️
Hi Bonita, I found your channel while looking for specialists who understand Arachnoiditis. That is the hardest part of my journey! I was diagnosed in 2001 and like you, I’ve had to figure out practical life changes. It was refreshing and tearful to listen to you, someone who gets it!! I wouldn’t wish this condition on anyone, yet here we are! I’d just love to connect more with you. I’ve joined many a support group, but haven’t found the right one for me. My goal is to live the best life possible!! 🙏😊
Thank you, Debby! I am so glad you found me, too! Welcome and I hope we can all help each other!