Share Your Story

Hello #Arachwarriors and friends! So happy you have found our new #Discussion Forum!

While there are many discussion topics available in this forum, I thought perhaps some of you might be interested in MY story. You've probably seen my name or chatted with me on our FB group, but likely don't know much about me.

I was finally diagnosed in 2008, some 6 years after symptoms started. I was one of the "lucky ones" who had a radiologist actually catch it without having to "look" specifically for it.

It started in November 1999. I was a young 32 year old mom of 5 children in a blended household, and owned a small community newspaper and publishing business. One night, coming home late from the office, our babysitter advised me there was little milk left for our 2 year old for the morning. Hubby was on night shift, so I quickly jumped into the car and took off down our highway to the small city 10 minutes away. Those 10 minutes were in a very rural area, and that night, the deer were running. Well, at least they were until I managed to run into one head-on on the highway. It was a big guy with a huge rack of antlers and he successfully totalled the front end. Despite traveling 100km/hr (about 60 miles/hr), I hadn't thought to put my shoulder belt on, although my lap belt was on at least. I hit my head on the wheel and was momentarily disoriented, but I thought I had made it away unscathed.

I was wrong. On awakening the next day, my hell began. To be honest, it hasn't really gotten better since then.

At the time, a simple xray was done and it was proclaimed simply soft tissue/whiplash. We did all the usual PT, massage, nSAIDs etc. Got the very best chair etc but the neck pain would not, and has never, subsided since that day.

After a few months of unrelenting pain, due to my constant complaint of stiff neck, severe pain and headaches one day they decided to do a Lumbar Puncture. Today I look back and wonder what they were thinking, given I had never even had further imaging on my neck. But back then I thought Doctors had all the answers so I submitted.

That was the day I got Adhesive Arachnoiditis.

Immediately after the LP, my left thigh went numb and tingly, I became incontinent of urine and my left foot became weak, eventually turning into dropfoot. Yet despite the complaints I was sent home and told it would get better. An emergency MRI was done, the report I have never been seen, but the Dr's came back saying that "they had bruised some nerves". Now I believe due to the chemical presentation of my AA that I likely had a large subdural bleed. (Blood that gets on the Arachnoid membrane acts similarly to having chemical injury such as myodil/Pantopaque. It tends to travel to many levels).

I was finally diagnosed after having 6 years of the same symptoms from the LP. Due to DDD I somehow managed, at age 38, to extrude 3 lumbar discs all at once, making me unable to stand, great pain etc. Luckily the ER Dr was excited about the new MRI at the facility and sent me for a full imaging. It was there, on that day, that the Adhesive Arachnoiditis was seen at multiple levels, alongside the herniations. The original cervical injury was finally seen too; a crack along 2 vertebra that had spent 8 years trying to fix itself with a bony ridge that we believe is now the cause of CSF leaks. The diagnostic journey with Arachnoiditis really never ends, mostly because know one truly understands it yet.

In 2008 I was told that nothing could be done but analgesia and OT services. There were no FB groups but there was a yahoo email digest that acted very similar to how our FB group, and this forum, acts now.

There were only 3 Doctors who were trying to help our community, although mostly they were working on how to diagnose the disease and underlying mechanisms. I don't remember any recommendation of treatments or protocols in most of their work but they laid an excellent foundation and work we should revisit. In fact, in April 2022 Newsletter I will be linking an old presentation by Dr Charles Burton from 1995. Alongside him were Dr's Aldrete and Dr Sarah Fox. Her work is still available on www.theaword.org

Since then, unfortunately my AA has continued to relentlessly progress. Now, thanks to the work of Dr F Tennant, we at least have protocols for treatment to try, based on his many years of treatment of patients as well as reviews of the literature. The Tennant Foundation has picked up the torch from Dr's Burton, Aldrete and Fox. Using his experience and knowledge he has created an Emergency Protocol, that had I been able to access way back in 2000, would likely have stopped the inflammatory reaction in its tracks.

Before I was a newspaper/book publisher I was trained in pulmonary technology as a Registered Technologist. But the recession of 1995 had displaced me from my position at the hospital. It was serendipitous then that once I decided I could no longer do the heavy hours in front of the computer, that a Dr called me to run his Lab. The job duties had me mostly standing for short periods interspersed with sitting, which at the time was the best situation due to the never ending pain. Those first 6 years without any diagnosis were awful. I was being told it was depression and stress, with being a working mom with 5 kids and all. 🤨 I would come home to nap lunchtime, and after the children were in bed (oldest 15) my hubby and I would go to a local bar every night so I could drink 2 beers and go straight home to bed. Otherwise, the pain would not let me sleep. Painsomnia is a real thing for many of us.

Eventually we moved for my husband's job in a large university town. I wasn't sure if I could really keep working and so hadn't begun searching. One day I received a call from the hospital's Chair of Respiratory Medicine asking me if I would be interested in doing Research for a Pulmonologist at the University. It was a dream job, and I moved up the ranks quickly, but all the while the pain was getting worse. Eventually I had to leave that position because it was time for a wheelchair, and I could not safety supervise patients in a wheelchair. I moved to work in the same sort of position in Endocrine and eventually, HIV/Aids research, which could still be done in my wheelchair.

(If you've read this far, congratulations. I am known to have too alot to say 😉).

This leads me to where I am and what I do, today. I have never stopped working, really. Every progression required an adaptation to a "new normal". In 2012 I became bedridden for 3 years. Even now, without a flare I must studiously avoid my triggers, pace, pace, pace, and if I am having a good week I can be in my reclining wheelchair for up to 6 hours at a time 2 to 3 x a week. The rest if the time I am in bed, working while reclined.

My greatest hope is that I can help our community pick up the torch from all those wonderful people who have come before, and lead us through to the final lap, where Adhesive Arachnoiditis has recognized diagnostic criteria, an accepted Gold standard protocol for treatment, an understanding of the biological mechanisms that cause one person to get it while another does not. We can even hope for FDA treatments in the future! Other communities like ours have come together and been successful with this new Rare Disease Research model, and they have been kind enough to educate myself and others on replicating their success!

Only 8 years ago we had nothing. Look how far our community has grown with Dr's like Dr Tennant and others. I can't wait to see what we as a Community can do in the next 5!

Thanks for reading this far! I hope you will submit your story of AA too!

(The story of how I made it out of that state to where I (usually) today would be another book. Perhaps another day I will write another lengthy post in the Living with Arachnoiditis topic forum about that).