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Any Adhesive Arachnoiditis members here?
Spine Health | Last Active: Dec 4 6:51pm | Replies (117)Comment receiving replies
Hi There, I am so sorry to hear of your desperate attempt to improve the nerve scarring. Believe me, most of us know what you mean. There are times I´ve screamed, "cut my legs off, cut them off!" And this when my pain protocol is taking a break and nothing works. But truly, attempting more surgeries is the worst thing one can do. When pain started really bad and I saw a kindly older physician, he grabbed me by the hand and said, "young lady (HA! I was 70 Plus), PROMISE ME, you will not let anyone touch your spine: you will wind up in a wheelchair." And he did it with such force and earnestness that it stayed. Plus Dr. Aldrete´s five-hour consult with me back in 2012 generated a 15 page report saying exactly the same thing: do not let them operate ever again. So we all have to learn that awful lesson, just don´t beat yourself up. And if these words here can help anyone else, we will have done our job. Too often it is next to impossible to find anyone with whom one can TALK! This is truly the beauty of Mayo Connect. A way to help each other out. I have not tried to make an appointment with Mayo about AA, so not sure what their experiences are, but will probably need a consult soon. Don´t be too embarrassed to confess to Dr. Tennant. He is the kindest and most knowledgeable professional in AA, and he´s seen it all. Take care, Joan
Replies to "Hi There, I am so sorry to hear of your desperate attempt to improve the nerve..."
Hi Hon (Is your name Kim?). Thanks so much for your kind words. Amazing how often we find similarities in our cases. Sometimes distance complicates things terribly, so it´s why having Connect and the hope of getting to be seen by not one, but a team of docs at Mayo, gives one hope. We all have delicate nuances in our conditions. Unfortunately the day I was able to see Dr. Tennant in 2018 was a very harried day for him for many serious reasons. But he did everything he could to give me advice and a medical protocol to bring back to my GP. And it took me over two years to get an appointment with him--but it was so WORTH IT. The problem is that not all GP´s want to follow instructions/recommendations from an out-of-state specialist.. While mine did for a long while, she has slowly been withdrawing. I live in Florida, so really cannot see Dr. Tennant regularly. Although I have to admit: HE ANSWERS MY EMAILS with specific questions and concerns. And has now expressed strong reservations about my doing a spinal tap....just as I thought would happen. So am left between a rock and a hard place. With two conditions listed in the National Association of Rare Disorders (NORD). Mayo is my only hope I think, but I´m still awaiting response to my online request for an appointment. I have followed up once over the phone, plus my GP already sent them my records. But all of this is about my case--never mind-- I just wanted to say thank you for writing, and yes, we all learn from each other just a bit more. GOOD LUCK KIM, will be keeping you in mind.
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Good afternoon! Hope you are having a nice low pain today. I was pretty good when I got up this morning, but started going down hill a few hours ago, so off to the couch and my ice compresses, my best friends!! Ice really helps. I wanted to let you know that you are not alone, I have said the same thing many times to cut off my right leg, my left leg is not as bad as the right one, the pain in my left one usually goes from the top of my leg and stops around the knee area. My right leg pain goes all the way down to the bottom of my foot sometimes.Just try to take it one day at a time and I guess we should embrace the days that aren't as bad.
Best of luck to you ad warm wishes,
Kathryn