Fighting back against chronic pain with a simple, creative, & healthy lifestyle. Inspiring others to become warriors.

My Health Story

I have a rare or orphan disease called Adhesive Arachnoiditis. This disease is iatrogenic, meaning it is caused by medical intervention.

Here is my journey:

In June of 2015 I had emergency surgery that removed a non functioning gallbladder. The surgery weakened me substantially.

The weekend of my husband's 30th birthday I picked up something I wasn’t expecting to be heavy and herniated my L4/L5. I did not know it was herniated until February of the next year, I thought I had just "thrown out" my lower back.

Before I found out that I herniated my disc, I saw a chiropractor and worked myself on rehabilitation. A few months into my own personal rehab program, I went through my two rounds of IVF. During this time I consulted my neurologist and he initially thought I may have an inflamed SI Joint but wanted to get an MRI to rule out anything dire.

After the MRI, I was told I had a severe right sided herniation at L4/L5 and needed a lumbar mylogram to access how bad the herniated disc was.

I was told by my neurologist that I needed a microdiscectomy. I was told there would be no way I would be able to carry a child that my herniation was that severe. I needed to get it fixed before I did my third round of IVF.

I was sent to neurosurgeon and during our preliminary examination he asked me what I've done to help myself and I explained that I walk every day, I lift weights every day, and I do yoga three times a week. By that time, I had noticed that the pain had gotten a lot worse since the lumbar mileogram, but it was still not running down my legs, it was isolated to the lumbar and my SI joint. I was told that a microdiscectomy is not a big deal, let's just get it taken care of so you can get to feeling better and have your family.

In March 2016, I had a microdiscectomy on my L4/L5. When I woke up from that surgery, I then felt pain running down my legs for the first time. For the next six weeks, I kept having sharp pain whenever I would move a certain way. Sharper than anything I had experienced prior to having surgery. Finally, we ended up going to the emergency room and I had another MRI done. It showed disc material had leaked into my spinal cord.

I was pulled me back in for immediate surgery in April 2016. When I woke up in postop, I knew immediately something was wrong. I had horrible pain running through to my hip and down my leg on my right side. They could not get my pain under control and I ended up staying in the hospital.

When I was finally released and came home, I noticed that I could no longer sit anymore without my right glute area and hip area hurting extremely bad. I was given multiple steroid packs every time I went back to see the neurosurgeon. A month and three steroid packs later, the pain never went down and I stopped sleeping at night because of pain. I finally went back to see my neurologist, he rote me a prescription for physical therapy. He recommended a pain management doctor as well.

I started seeing a pain management doctor. He prescribed gabapentin to start with. He also recommended epidural injections in my L4 and L5. At the same time, I also started aquatic physical therapy. As time, went on I noticed the more I moved certain ways, stretched too much, or if someone tried to massage me the worse my pain would get.

In August 2016, I had my first set of epidural injections L4/L5. I had a horrible reaction to them once the anesthetic wore off. My leg started convulsively twitching and I was in screaming, horrific pain from the injection site. When I went back for my post-op he increased my gabapentin to 1800 mg a day. He also tried me on some more new medications, that ended up having terrible side effects.

One month later, I started having more and more weird medical issues crop up. I did grow stronger during this time, but the pain while sitting down or laying down persisted. I was convinced that I had to have re-herniated my back. I saw my neurologist and after arguing with him, he finally ordered an MRI and a series of x-rays.

The pain kept going up but I noticed as long as I kept moving and active and never sat and only lied down to go to sleep I was OK. However, since I really hadn't had any quality sleep since March 2016, my exhaustion was starting to take a toll. It was near impossible to keep moving all day.

When I consulted with my neurologist about my x-ray and MRI he simply told me I had scar tissue in my back. I asked if he thought it would be OK if I started going back to Iyengar yoga.

Around this time I began to research for myself because I felt like my current doctors were not meeting my needs and concerns. I was at the point where I believed all of my medical problems, were all related somehow to my back surgeries.

In January 2017, I was now 30 lbs overweight. I started my third Whole30 food eating program. This was to be the first one I would complete post surgery. I was also doing private lessons for yoga once a week and yoga at home everyday, and started a therapy called fasciablasting.

Following up with my pain management doctor in January, he wanted to insert a catheter in my back to break up the scar tissue and inject some medications that were supposed to, supposedly, dissolve the scar tissue around my surgery area. This was not something that I was wanting to do, it sounded risky and dangerous and I was already leery of anything invasive concerning my back.

At the end of my rope, I decided to consult an orthopedic surgeon. He diagnosed me with piriformis syndrome left and right sided, hip bursitis left and right sided, SI joint malfunction left and right sided, and IT band syndrome left and right sided. He wrote a prescription for physical therapy and gave me several targeted injections in the soft tissue around my hips and piriformis.

Met with a new physical therapist because I felt I needed I fresh eyes. I luckily found an amazing PT who has been with me since January of 2017 (and is truly learning about Arachnoiditis). He started dry needling me in targeted locations that were extremely painful. We did slow exercises to build strength, and not inflame anything.

In March, I went back for a check up with the orthopedic surgeon, who extended my physical therapy for another six weeks. At this time, I had been eating clean, Paleo meals, since January and have been doing yoga consistently since January. Frustratingly, I hadn't lost a single pound!

My last meeting with the pain management doctor was also in March. Unfortunately, I cannot remember what he did that drove me to find a new pain doctor, but I felt I definitely needed one.

In April, I met with my general practitioner and he suggested one of the best female pain doctors in Houston. I met with her and she immediately noticed how tight my IT bands were. I told her of the orthopedic's findings and she suggested that her orthopedic surgeon on staff do an ultrasound to determine how inflamed I was.

Her orthopedic did a complete ultrasound of the left and right glute area, hip, and IT band. He found zero signs of inflammation. He then asked to look at my last MRI from November 2016. When he looked at it he immediately said, "You have adhesive arachnoiditis."

This is the first time I have ever heard of adhesive arachnoiditis.

I went home and immediately started researching and found out that adhesive arachnoiditis, is one of the worst kinds. Also, spinal injections are contraindicated!!

By this time I was very adamant that no one would be doing anything invasive into my back at all.

I met again with her orthopedic surgeon, who I found out specialized in Regenerative Medicine. He wanted to put me into his program and wanted to do some extensive testing on me. He uses a program designed to increase wellness in patients that have chronic illnesses called Metabolic Code.

By August 2017, I started the metabolic code program. We decided to focus on the endocrine system since I was in stage three adrenal failure. I also started taking Juice Plus, along with the multiple supplements I started taking in January of 2017.

So here we are in January 2018, the birth of my blog. I'm not a doctor. I'm here to encourage others and tell you what has worked for me. There is no cure or treatment for Adhesive Arachnoiditis and it is a progressive disease. I will keep fighting everyday. If I had to describe it, Arachnoiditis is like Fibromyalgia, Multiple Sclerosis and Spinal Meningitis had a baby. If you have chronic pain or illness you may find some things that helped me can help you.

I developed my own treatment program. It took me a year of doing yoga every day, drybrushing my skin, fasciablasting, hanging on my inversion table, taking Epson salt baths, eating Paleo, and my pain management doctor finally found something that worked on the pain flares.

I have an IFC/TENS unit that I use day and night. Lidocaine patches also help. I can now sit for the length of a movie and can sometimes binge watch my favorite tv shows. I still can't stand up for any length of time, but I'm working on that. I'm not perfect and I refuse to let the new normal take over my life. I finally lost the 30 pounds I gained and I'm learning new ways to feel better every day.

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