The mission of the Arachnoiditis Research & Education Project is to bring diagnosis and treatment to every community. As part of this mission, we wish to prevent the occurrence of AA whenever possible and have it diagnosed as early as possible to start treatment and prevent complications.
This section of our website is deemed critical, as the story of afflicted persons is often very instructive and helpful in accomplishing our mission. These stories of persons with AA that we present will have an educational message that will hopefully help others with AA.
An AA Story,
First, I will start with a bit of my medical history. My first autoimmune diseases were fibromyalgia and psoriatic arthritis. As of this date I have had 5 autoimmune diagnoses. We will get back to that. I discovered the PA (Psoriatic Arthritis) after my first back surgery. I am healing from my 4th back surgery as I write this. At age 41 I had x-rays done of my back, and I had very little to no arthritis. My spine looked like a healthy/normal 41-year old. Three years later, however, I was in surgery with a ruptured disc needing a 2-level bone disc removal procedure. The rupture was so bad that for the 3 weeks before I had surgery, every time I stood up, I collapsed on the floor. Surgery seemed to go well. In the meantime, we discovered the PA, so I started on my search to find a medicine to help slow down the process for that disease. A year and a half later my back collapsed, and I was back in surgery. This time I required fusing of 3-4 levels. I had a lot of numbness and weakness after I went to rehab to retrain myself to walk. In between those 3 years we did try multiple steroid shots for pain in the back. I did recover, but unbeknownst to me, AA was brewing! About a year and a half after surgery I went to London. It was an amazing vacation, but by the end of it I was having severe pain in my feet and problems walking. After I got home it just kept getting worse. The weird sensations started, and I had severe spasms at night. I wasn’t sleeping and the pain was now constant. I finally got a diagnosis of AA. I was sent to pain management and put on meds that only helped a very little. The one that helped the most was Valium®, and they don’t want anyone on that or pain pills. At one point my leg gave out on me and I broke my ankle. I do know that the mental work of the pain clinic and the support of my family and friends along with my faith is the only thing that pulled me through. As anyone who has AA knows, it’s the process of being tortured by your own body physically and mentally! And to top it off Drs seem to think you can work through it. I am so appreciative for all the base work I did, but without Dr. Tennant’s protocol, I wouldn’t be walking. So next my sister and I went to a neurologist and I got diagnosed with small fiber neuropathy. She started thinking, could these autoimmune diseases be linked? She started researching and found Dr. T’s podcast. With that we were able to track him down. I’m lucky enough to be living in California. I flew down to see him for about a year and 4 months. I had to be in a wheelchair on and off the plane and have special seating. After my first shot of methylprednisolone in his office, I felt a difference! I have flown down to see him every 2 months ever since. By the 3rd time I had no need for a wheelchair or special seating. I feel I am a success story. I have had to have 2 more back surgeries but with no new signs of AA. I’ve used the emergency treatment protocol after each surgery and after this last surgery I am feeling really well. No new issues and am feeling strong. I truly believe that the raw adrenals help in recovery as well. Also, collagen supplements help in the healing process. The 3 emergency meds are so important to get the inflammation out and let the body start healing. I was also able to find out what hormones that I was low in. That has helped. My energy is good as well. My newest MRI showed some healing of nerves. There is hope! I am no longer tortured. Thank you so much to all who have been a partner of finding this hope!
Editor’s Note: This is the first person we know who used the emergency protocol after spine surgery. We normally recommend it for persons who develop AA symptoms after a spinal tap or epidural injection.
- Ketorolac – 15 to 60 mg, daily for 3 days
- Methylprednisolone (Medrol® 6-day Dose Pak)
- Medroxyprogesterone 10 mg twice a day for 5 days