ADHESIVE ARACHNOIDITIS ~ This Is My Story

Although I have always kept my blog focused on books, and that will always be the case as someone who is living with the most severe level of this disease I wanted to share my story on how something that was meant to help me, instead sentenced me to a life on fire.

I started having back pain when I was 15, and as I got older the pain became worse.  When I was 21 my pain management doctor at the time set up a series of epidural injections that was supposed to help with the pain.  This was only weeks after coming home from my honeymoon, and at the time we had a 1-year-old.

For 3 weeks after the injection I was getting terrible headaches, and nobody could find answers as to why.  It was finally determined that they were spinal headaches caused by the needle puncturing the dura layer of my spine, causing a spinal fluid to leak.  The reason they didn’t determine that was the cause of the headaches right away is because mine didn’t start until a week after the procedure, and they generally start within the first 24 hours.

I had to receive a blood patch in order to stop the spinal fluid leak, which means they drew blood and injected it into my spine to form a clot to stop the leak.

A few years later, I was under the care of a different doctor, and he too wanted to perform a series of injections, I explained to him my previous experience and he told me there was no chance of that happening because he performed them in a way to make that impossible.

He ended up being very wrong about that because again, I ended up with a spinal headache and received a blood patch in order to clot the leak.

As years went on my pain continued to get worse.  I had been with the same pain doctor for 10 years, and at one appointment while viewing an MRI I had just received he stated, “You will be in a wheelchair by the time you’re 40.”  

It didn’t make sense at the time, but now I realize he had seen in the MRI that I had Arachnoiditis, and because he was one of the doctors that did the injection that caused it, he said nothing.

In the 10 years I was in that doctor’s care he had been the only person to view and discuss any MRI results with me.  If he had been honest with me in what he really saw in those scans then at that point we could have prevented me from being where I am today.

After no longer being in his care, I had an MRI done at a different location and that was when I received the Arachnoiditis diagnosis.  That was in 2015.  My kids were 10 and 6 at this time.

I was in terrible pain, and was sent to the practice of my previous doctor, but this appointment was with his brother who was a neurosurgeon.  I explained to him where I was having pain, and at that time I had begun having pain in my lower abdomen in addition to my lower back and left leg.  He told me that the pain in my abdomen was in no way connected to my Arachnoiditis diagnosis.

That led to my husband and I trying to determine what was causing it, and the conclusion we came to was that it was something I needed to see a gynecologist about.  After several visits with my doctor, a decision was made that I needed a partial hysterectomy.

After weighing the options and doing what we thought would make the severe pain I was in go away, in 2016 at 32 years old I had a partial hysterectomy.  I lost my ability to have more children, and the same pain was there after the anesthesia wore off.

 My pain worsened at a rapid rate, and we went to doctor after doctor with no answers, and nobody that was willing to help.  There were days and nights that the pain was so agonizing that I had a huge fear I wouldn’t wake up the next morning, and there were moments that I don’t think I wanted to.

It had come to the point that I was basically bedridden, and still no doctors helped me.  I had begun to live a life of watching others live theirs.  Everyone in my family felt the ongoing effects of this disease, and that continues to this day, and for all my days.

I did end up going to a doctor at Cleveland Clinic, and although he wasn’t able to help me because he was a surgeon, he did give us a lot of information on Adhesive Arachnoiditis that we hadn’t been aware of before then.

In 2018 my husband came home from work to me sobbing because I was in so much pain, and while I was in pain 24/7 I rarely let anyone see how bad it really was.

At that point he was done letting doctors take the lead in my care, he spent days on the phone calling providers in our area.  He would ask them if they had heard of Adhesive Arachnoidits and if they were willing to take on a patient with that diagnosis.  When he finally got a “yes” response, we quickly took all the proper steps to get me to this doctor.

By this point I had lost my faith in doctors.  At the very first appointment my husband asked the doctor, “are you going to stick with her or after you try one thing and it doesn’t work, are you just going to tell her there’s nothing more you can do?”  He said that they would stay with me, and continue to try different things until I had a quality of life again.

That was 3 years ago, and although I do still have anxiety when I need to tell them my pain is worse because I always feel like that’s when they will say the dreaded phrase, “there’s nothing more we can do.”

My life is still nothing like it was, and it never will be.  My pain is being managed to a certain degree.  I can’t really do anything except lay down in bed and at times sit at the computer because anything more than that will cause me to end up in bed for days or up to a week in agonizing pain.  

My life is no longer my own, my life belongs to adhesive arachnoiditis.  I can’t make plans because from one day to the next I don’t know what my pain level will be.  I’m pretty much confined to my house because riding in a vehicle causes pain.  

At this time I have little to no nerve function from the waist down.  I have muscle spasms that make different groups of muscles become extremely tight, and they never loosen.  Even with being on a pain patch that delivers medicine every hour, along with muscle relaxers, an anti-inflammatory, and over the counter supplements, turmeric and a supplement called Healthy Feet and Nerves, I have high pain levels every day and the worst is at night.

I have been a stay at home mom for 17 years, but ever since 2017-2018 I’m not the mom I used to be.  I took care of the kids and everything around the house while my husband worked, I also cared for my niece and nephew.  They were 8 and 6 at the time and I had been their only babysitter from the time my sister went back to work after they were born until I came to the heart wrenching realization that I could no longer fill that role.

I went from spending my whole adult life taking care of those around me, and all of a sudden I needed others to help me.  My oldest graduates next year, and I can feel the anxiety starting to build on whether I will be able to sit through his graduation ceremony.

The most basic human actions are what worsens my pain, sitting, bending, walking, riding in a vehicle is the worst because when we inevitably hit some sort of bump on the road it causes a huge spike of pain.

The biggest thing to slow the progression of this disease is to keep the inflammation down in the spinal cord, and sadly after being lied to by doctors, I didn’t find out until it was too late for me.

I am lucky to have come across the doctor that my husband found for me. There are so many people that don’t have that.  I was at a doctor for something unrelated to my AA, and when I mentioned I had this disease he dismissed me with a sarcastic comment.  There are so many stories of people with this disease that have worse interactions with the medical community than that.

There are doctors who say that this isn’t a real illness, and there are doctors that are not willing to help because the main course of treatment is pain medication.  The opioid epidemic has been devastating to the chronic pain community.

With the regime I’m on, in some ways I’m better than I was, but my disease recently had a huge progression, and we are trying to adjust things to allow me to be more comfortable.

Despite all of this, I’m happy.  My kids are happy and healthy.  We may not be able to go out as a family, but our house is full of love and a lot of laughter.  And as hard as it is to no longer be the person I was before, I have spent the past year and a half finding the “me” who had long been buried under everyone else’s needs.  I started my blog in early 2021, and some of my achievements astonish me.  I didn’t think anything could top it, and yet in early 2021 I became a personal assistant for the very first time, and within a few months I was a personal assistant to a total of 4 authors.  

It’s like a slap to the face when you realize you can’t be you anymore, and yet because of my beloved indie book community, I have found a way to thrive without having to leave my bed.

I just hope that my tragedy can prevent someone else from the same fate.

The pain (or agony) associated with adhesive arachnoiditis is particularly cruel and unrelenting. The adversity is particularly devastating because this disease, unlike others such as cancer, do not limit life expectancy.”

Medical Journal

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