My medical battle

“Mrs. Horner, are you depressed?” asked the doctor sitting across from me.

This was one in a long series of Specialists that I had consulted with over the years, regarding my seemingly random medical conditions. “Well, I’m getting there because you people can’t figure out what’s wrong with me!”

This wasn’t the first doctor to question the reality of my suffering but I decided that he would be the last. At least the last that I would give power to, to make me question my own reality! That day was the turning point in my medical mystery because it was the day I realized that I was going to have to become my own expert.

I returned home and shared my frustrations with my husband, Steve. He had been on this road with me for decades and he shared my dismay, yet again. He looked at me with assurance in his eyes though, and said “Shay, if you were our child, you would know everything going on in your body!”

He was absolutely correct. You see, I’d been in that position before. Our first born son, Robby, had been a micro premie 25 years earlier, at 1lb 12oz. When he was about 2 weeks old, an intern in the NICU decided to give him formula, although I had been pumping furiously to get my breast milk to come in, for two weeks.

Within a day his colon had died. A condition called Necrotizing Enterocolitis (NEC) in which the colon is not mature enough for anything other than possibly Mother’s milk. It was then that my first medical education began.

The lead doctor in the NICU, the late Dr Arthur Vaughn, was a wonderful man who left that day to retrieve his medical text books. He told me to read everything about Robby’s condition and then we would talk.

He was a doctor who empowered people, including a scared, 21 year old, young mother.

From that day on, I was a student of Robby. His colon rupture caused severe brain injury (Periventricular leukomalacia) and the next 2 1/2 years were spent learning every possible treatment option, even if it meant looking to Europe for answers.

His Neurologist at the time sent a memo to all of his Specialists at the children’s hospital stating that “Mother has unrealistic expectations of son.”, not knowing that “Mother” was receiving every piece of medical correspondence.

I proceeded to send my own memo stating that “Mother will never be disappointed with son, even if he never does more than he is now. Mother will however be disappointed with herself if she doesn’t give him every opportunity to do more!”

In hindsight, many of the treatments that his Neurologist scoffed at, as a waste of time, are now considered standard of care for brain injuries. There are also some treatments that I’m now using myself, with my own neurological diseases.

I, as a mother, had much more time to research, than a practicing doctor had. I also learned that a person will absorb much more information, for personal reasons, than for grades. His health was my only subject.

Later I would also learn that I had a very high IQ. When my second son was tested at “genius level” IQ (160), the therapist informed me 1/3 of his IQ drop out of high school, out of boredom. I had gone from a brain injured son to a genius level son, and it was as much of a parenting challenge, I can assure you.

I immediately asked her to test mine, as I fell into that category of a “high school drop out”. School had bored me to no end. I had attended 13 schools, because my father was a Green Beret, and I had probably never turned in any homework.

I was the student that could hear something one time and I understood it. In my mind, why did I need to do 50 problems at home to prove it? I would always ace my tests and therefore, in classes that would average homework with exams, I was a C student, yet I knew the material 100%.

I was raised in a family where college wasn’t expected either. It was never something that was discussed with me and at 17 I couldn’t wait to get out on my own and find my way.

I had eventually gone to the Community College for my degree and later seminary, but I never wanted my son to claim that he was smarter than me, now that he had that information. You see, all I ever wanted to be was a wife and mother!

I had even tested in the top 2% on my SAT and a teacher asked me “What do you want to do with your life?” I told her “Be a wife and mother”. She challenged me and said “I mean a career.”

I told her “I feel it’s more important, for me, to be a good mother than it is to be a good lawyer, because if we had enough good mothers, we wouldn’t need good lawyers!”

Now, I was 17 at the time and still have great respect for working women and mothers. It was just my personal calling to be a mom. Who would ever guess that my children would need my high IQ?

I also realize now, that my life experience has been my University and has prepared me to help others and help researchers, who have called me a colleague.

Robby died when he was 2 1/2 years old. It was the most tragic thing that can ever happen to a mother. I was prepared to take care of him for the rest of my life but I wasn’t prepared to lose him.

Many of his doctors and nurses attended his funeral and one doctor told me “You deserve an honorary degree. You could be a pain in the ass but I wish more mothers were.”

I was actually in paramedic training at the time of his death and for that I have been utterly thankful. You see, his airway collapsed in his sleep (Tracheomalacia) and I found him, dying. Because of my training, I knew exactly what to do, so I never had that question of “If only I’d known what to do, maybe he’d be alive?” However, after finding him, I couldn’t continue down the path of becoming a paramedic. I had the fear of going to a call and freezing up with the memories of it.

After that I believed that my medical battles would be over. Instead I decided to honor my son, and turn my suffering into a positive, by going to seminary and becoming a Chaplain.

If THAT loss hadn’t thrown me into depression, that shows my mental health. I spent the next decade helping other families with similar stories, while starting our new little family over again with our 2 children.

Over the years though, I would suffer with random medical issues, some severe and life threatening, and no doctors could connect the dots. I told my husband that it just wasn’t normal for anyone to have so many seemingly random medical issues.

There had to be an underlying condition, or conditions, and that the “issues” that doctors were treating me for, were actually symptoms of something greater. My former Primary Care Doctor once said to me “If you weren’t so healthy you’d be dead by now.”

Knowing what I know now, my neurological symptoms began in childhood, after surviving Encephalitis at 6, and have followed me throughout my life. Many things that I assumed were just normal to everyone, I now understand were caused by neurological challenges, with my nerves sending wrong signals to my brain.

I would get stabbing pains in my chest in middle school that would send me to cardiology and pulmonology. I had headaches so bad that I had to be homeschooled for the 10th grade. I developed eclampsia with Robby, which is why he was taken at 25 weeks, and eclampsia also has neurological components to it too. Random problems with no answers.

They were simply caused by a disease process that wasn’t recognized until the early 2000’s and even now, most doctors still believe what they had been taught in medical school. That Tarlov Cysts don’t cause symptoms.

Some Medical Schools still teach the old understanding. The research for the conditions that I have is still in its infancy, and doctors don’t have the time to keep up with the latest knowledge.

I don’t blame them for that. Our current medical climate makes it overwhelming to just keep up with the patients that they do understand.

What I DO blame many of them for is treating their patients with contempt at times and that, if they don’t understand the diseases, then they must not be real. This is what I, and many others, have faced.

It’s called “Medical Gaslighting” and it can cause severe mental harm to patients that are already suffering the physical harm of a disease process that they can’t get help for.

It can even destroy marriages, families and other relationships, because if the doctors tell you that you’re healthy, sometimes for decades, yet you’re still in extreme pain, and have symptoms that send you to the ER regularly, what are they to believe about you? I’ve watch many relationships destroyed over this disease. It takes tremendous strength and commitment for others to believe YOU and not what doctors are telling you!

My turning point

When Steve challenged me to treat my own health as if I was our child, my whole attitude changed. I immediately collected all of my medical records and images, going line by line, researching every possible connection.

Finally I read about an “incidental finding” on my MRIs that had been completely dismissed by every doctor that I had asked about it. Tarlov Cysts were scattered throughout my spine (11 in my cervical spine alone), with the sacral cysts being so large that my sacral bone was almost completely eroded through. One radiologist even described it by saying, “sacral space OBLITERATED by lesions (cysts)”! Still, doctors claimed that they weren’t causing my rapidly declining symptoms.

Every one of the doctors, including ones that were friends, said that those wouldn’t cause problems but when I began to study them, they described every single symptom. I believe one of the reasons for this belief system in the medical community is that approximately 90% of sufferers are women. Women have often been dismissed by male doctors as having mental or emotional problems, such as depression!

I researched further and found study after study that had proven that up to 5% of Tarlov Cyst sufferers are symptomatic. That may actually be a low estimate because most doctors aren’t educated about them and there are probably many thousands of people walking around not knowing of their condition. It’s most commonly found in the sacral area of the spine but I’m even more rare. I have them throughout my spine, in each area of my back.

Here’s an important thing to know about TCs. I hate that they’re called cysts because that one word minimizes the possible gravity of this condition. They are not typical cysts that can be removed.

They are actually more like spinal cord aneurysms. They occur at the nerve roots that extend off the spinal cord. They are actually the nerve roots themselves that fill with CSF (cerebrospinal fluid). They can not be removed.

The only treatment to prevent permanent nerve damage, in severe cases, is to decompress the cyst by either pushing the fluid back into the spinal cord or cutting the cyst to let the fluid drain. Once this is done, the surgeon will wrap the cyst in bovine pericardium, or similar material, in order to prevent the cysts from refilling.

I describe it like an old weak water hose. When the water fills the hose, the weak spots bulg out. You can wrap the hose with duct tape but there’s a chance that new bulges will develop over time, because the material is weak. In TC patients, our spinal cords, particularly the Dura, is weak, which allows the cysts to develop.

This procedure can be done on all sacral cysts during one surgery, because the cysts are not attached to the main cord, but to the “tail” attached to the end of the cord.

Unfortunately, the higher cysts have to be treated one at a time, and in the case of someone like me, who have cysts throughout, that is not possible. Even if I did have several surgeries, the fact that my tissue is so weak that it allowed this condition to begin with, would suggest that new cysts would likely form.

Again a new condition. The tissue weakness is likely because of a Connective Tissue Disorder. Many can be tested for but many are only diagnosed through symptoms and medical history. One theory, that is being tested now, is that some CTDs have been caused after surviving a virus in our youth, such as the Encephalitis that I survived at 6. I helped one researcher conduct a study about this last year.

Back to my cysts though. One study, published in 2004, was the defining study in my mind, because 213 patients with symptomatic TCs had undergone a procedure in which the cyst is emptied and then fibrin glue (not actual glue but a biological binding agent) was injected to prevent them from refilling (AFGI).

The procedure was a great success initially, and most of the patients’ symptoms went way. Unfortunately, over time the procedure caused some other issues with some patients, in which nerves began clumping from the glue, and/or scarring (Adhesive Arachnoiditis), but the one thing this research did do, was to prove that the cysts could be disabling. This procedure is no longer the best treatment but it proved a point!

My husband was, at the time, working with a major sports organization and he was able to call in specialists and researchers from around the country to consult on my case, including one of the researchers with that study.

She was the person who officially diagnosed me and pointed me in the direction of one of 3 neurosurgeons in the country that specialize in TC surgery. I chose the world’s leading surgeon, in Dallas TX. He only operates on these cysts, nothing else, and has performed thousands of these surgeries.

My surgery for my sacral cysts was performed in June 2018. By that time my symptoms had become catastrophic. I had become partially paralyzed on my right side, when my right leg began giving out under my weight. I had been living in level 7-9 out of 10, daily pain for years, on heavy opioids, with other symptoms that caused bladder, bowel, and sexual disfunction symptoms.

By the time that I had finally figured everything out and gotten into surgery, my nerves tested “minimally functional” from S1 down. My recovery was very difficult and long, for that reason. In that time I also learned of several other neurological conditions that I have.

As I mentioned before, I have cysts throughout my spine which leads us to believe that I have a Connective Tissue Disorder that has made my Dura weak. I also have mild Adhesive Arachnoiditis in my lumbar spine. I have IIH which is high CSF (cerebrospinal fluid) pressure.

With that I have an Empty Sella, which is the area of the brain that houses my pituitary gland. The high pressure has crushed my gland to the point that the Sella looks empty. This causes fluctuations in my Cortisol levels which is another condition called Cyclical Cushings Disease.

I also have a Chiari Malformation, which causes my brain to “sag” into the spinal canal. Lastly I have structural issues like osteoarthritis, scoliosis, and Spondylolisthesis.

Other conditions that can complicate my health include having had a complete hysterectomy when I was 30 and having a thyroid lobe removed a year earlier, when I was 29.

So many different conditions, so no true way to figure out what is causing what symptoms. Some I have been able to deduce, over years of trial and error, living in my body. Thankfully I have found treatments that have reduced my neural inflammation and have given me much of my life back. I will live with these diseases for the rest of my life but I have found ways to live, not just exist.

Those are the things that I want to share with others. To help others to not have to struggle as long as I did, brings some sense to my own suffering.

Early diagnosis and treatment can do that! However, until doctors acknowledge the conditions, patients will be denied early interventions and treatments that could prevent this from becoming catastrophic for some, like myself.

Right now, it usually takes a patient getting to a catastrophic stage before a doctor will believe that these could be the cause. What unnecessary suffering for so many, and the chances of halting the progression of symptoms goes down dramatically for them.

In the years since figuring out my diagnosis, by myself, I became an Administrator for an online support group of over 7k people from around the World. I, and the other admins, were able to help members understand their conditions much quicker than I did and direct them to specialists and treatment options that have helped. I’ve observed literally thousands of cases. It’s been like a laboratory of sorts, full of learning.

I’ve also been able to help with research studies and to change a few doctor’s minds about these conditions.

My pain management doctor just had another patient get surgery in Texas. My former tennis partner’s husband is an orthopedic surgeon and didn’t believe in TCs being symptomatic before my case. Now I know of at least one patient that was diagnosed and quickly treated because of him.

My greatest frustration is that I am connected with the leading researchers of these conditions in the world and yet I can’t find my own local medical team. I have an amazing Pain Management Doctor. He has been my “life support” in my personal battle, but even he has felt unprepared and unable to absorb the knowledge needed to make him feel comfortable treating me.

We work together in figuring out my best treatments but he’s overwhelmed with his regular patient load. He is able to treat other TC patients properly though, because he was open to learning and his desire is to truly help his patients, even if he doesn’t understand the whole disease process himself. He often refers those patients to me.

I have not found a primary care provider who would like to learn more, although he does do his best to support my efforts and take care of “the basics”.

After years of medical gaslighting though, I’m exhausted from going to neurologists and other specialists and still having to battle the system.

It takes too much time to prove that I’m worthy of being listened to. To convince them that maybe I know what I’m talking about. The fact that, not only do I know what I’m talking about, but I probably know more than they do about what I’m talking about, often either angers them or scares them.

I would love nothing more than to collaborate with a local doctor, or doctors, to find the best care, not only for myself but for all of the other patients that I help now. Maybe one will reach out to me one day.

Until then, I will continue to help the patients that are sent to me or find me in the support groups. It became a full time, unpaid job, and I loved it, but now I’m spending my time writing and teaching the things that I have learned. Maybe that way it will reach more people that are suffering.

To turn my suffering into triumph, by helping others, helps it make sense to me. In changing the minds of just a few doctors, there are dozens of patients that haven’t had to battle like I have. What would happen if this information could reach the masses of doctors and challenge them to look deeper too?

For now, at this point, I am living a wonderful life. I’ve been married to Steve for 33 years and God has blessed us with 2, healthy and successful, young adult children. Our son, Cameron and daughter, Abby.

This journey wasn’t a journey walked completely alone, it was also a family’s journey. Each person was effected by my diseases, including my children! It was always my goal to focus on the good, even in the most extreme bad.

There were times of great disappointment, like when I had to miss my daughter in the Marching band at Auburn, marching in her first Bowl Game. So many times that we ALL had to face frustration and do more work, to function as well as we could, like all families do.

Thankfully, by choosing to keep our hearts and minds focused on the positives, instead of allowing them to wallow in the depths, each of those difficulties were just “moments”. None of us allowed our thoughts to stay in that place. For that, my children and all of us, have become BETTER because of our circumstances and not Bitter!

After a 30 year career in sports, Steve decided to buy a medical mobility business in Jacksonville, Florida, called the Home Ability Store. We cater to the elderly and disabled, to allow them the ability to stay in their homes for as long as they’re able and to help with the freedom of movement and comfort for those who struggle with mobility.

Our children work in our business and have learned a great deal of compassion for our customers because I was their mom! It’s my hope that my story can help create faster change in the medical community, by sharing.

Update: I finally found the best Primary Care provider in the world, for me! She is actually a friend that I went to high school with, who just graduated as a Nurse Practitioner! She knows my whole story and has been so excited to be able to finally help ME! I’m so proud of her and thankful to God that she was part of His plan for my journey all along! Great Job Hope Arcuri NP!