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.
THERE IS HOPE.
I would like to share a positive story with you all.
I was in a terrible, terrible state (like many of you). I had every symptom in the book: Extreme back and legs pain. I couldn’t stand to brush my teeth or wash my hands. I couldn’t take the elevator to get to my motorized wheelchair.
I had the feeling of water running down my legs, numbness, burning of my feet accompanied by red patches. I had muscle cramps day and night. No sleep at all, and the list goes on.
I was heavily medicated with everything you can imagine: Opioids, cannabis all day through, Gabapentin, and so much more. The pain just got more and more intense.
Dr. Tennant was the one to do the diagnosis after reviewing my MRI. I have adhesive arachnoiditis (AA). My own neurosurgeon’s diagnosis was: Three failed surgeries.
I, of course, had countless spinal injections as well, despite the fact that they didn’t work. I didn’t know ….
After Dr. Tennant’s diagnosis, I shared it with my family Doctor and my neurosurgeon. I had a long talk with my family Doctor. I brought Dr. Tennant’s book to him and marked the pages that had the treatments which Dr. Tennant recommended for me. I told him that this is my last hope as my condition not only affects me but my all family. What’s the point of living like this??
I was basically in bed all day long, just out of it, and IN PAIN. I asked him to help me by just looking at the plan. Just read what I brought him.
He did. My doctor is also a researcher. So, he studied it. He consulted with other Doctors and agreed to apply the recommended treatment. He, of course, explained the risks but agreed that at this point we need to try.
So, I started the hormone therapy to TRY to rebuild the nerves, (I was already on Gabapentin, and the rest).
The most difficulty I had was convincing the Doctor to try KETOROLAC. He added Ketorolac by mouth 3 times a week. In the first month, it was magic. I was walking 2 km a day!! My doctor was shocked to see the effect. When it started to lose its effect, he changed the prescription to 30 mg. injections, twice a week, and if needed, 3 times a week.
This changed my life.
As you know, Ketorolac is a powerful anti-inflammatory and pain control medication. My doctor said that he starts at 30 mg, and with time, I will probably need 60 mg injectable.
I have a nurse coming to inject it. Still – in case of the possibility of intolerance or other issues, and we will need to stop, we have a plan for an anti-inflammatory medication (that I forget the name now)- recommend by Dr. Tennant.
My life has changed. No more cramps. No more feeling of water running down my legs. I still have mild burning here and there, but not 10 times a day.
I KNOW THAT MOST DOCTORS DO NOT AGREE WITH THIS, I KNOW.
I felt that I need to share it in case you have a doctor that you can have a productive conversation with. I don’t know the long-term effect, but I do know for sure that just being in bed all day, drugged out, caused multi-system problems.
Now I am alert. I am still on opioids because it’s not something that I can just cut like that after 7 years on doses that I don’t want to tell you.
It has been cut in half, but the objective of being pain-free has been achieved for now. I was sooooo close to losing my mobility. When I walked 10 mins very slowly, my muscles were so sore it felt as if I had run a marathon. My muscles were dead.
Now can take a good walk. I can walk just with a cane. I don’t take cannabis because I don’t need it. But, if I do need 20mg of CBD, it does the job. I used to be on 20mg 3 times a day + THC 10 mg. So, my memory was affected. I am sure many of you are familiar with this.
I got my life back, and pray for all of you, each one of you, that somehow you will be able to have a productive talk with a good doctor. A Family Doctor, a Neurosurgeon, whoever is open-minded.
I hope that this gives you hope, not frustration. Think of a Doctor who might be helpful. I don’t know for how long I will be able to be on it, but in the meantime, I was able to regain so many things which were lost.
Wishing you good health. O, yes, I live in Montreal Canada.
Take care, stay safe. NSB
RESPONSE NOTE: Adhesive arachnoiditis (AA) is a most serious intraspinal canal inflammatory disorder. Unfortunately, the few agents that will truly control AA, such as ketorolac and methylprednisolone, have risks. In almost every case, the benefits of these agents outweigh the risks.
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