Series Introduction: “The Noggin’ Chronicles”

Photo Courtesy of: pexels-hải-nguy�n-14312400

Unfortunately, the image above represents millions of migraine sufferers around the world. However, if this was a real migraine sufferer, you’d likely see them in a room darkened with blackout drapes and an assortment of things within arms reach so the migraineur doesn’t have to move too much. (Getting off the floor with a migraine is a different level of ugly.)

This initial series post will be fairly long, but I wanted to explain what’s been going on medically, decisions that have been made and the outcomes as I know them. This is separate from the other types of blog posts that I’ll be doing, but I think this is important.

It’s been no secret I have struggled and fought with migraines over the past few decades. I have been on over 50 medicine / medicine combinations and nothing has “worked” for very long . During the course of my neurological issues, I was subsequently found to have Occipital Neuralgia (ON) which has been a primary trigger for at least the past 6-7 years, only said because that’s when the official diagnoses was made by by my neurologist. The condition has been getting progressively worse, but I’ll get to that.

According to Johns Hopkins, “True isolated occipital neuralgia is actually quite rare. However, many other types of headaches —especially migraines — can predominantly or repeatedly involve the back of the head on one particular side, inflaming the greater occipital nerve on the involved side and causing confusion as to the actual diagnosis.” Also, according to both the American Migraine Foundation and the Barrow Neurological Institute, “Occipital neuralgia is relatively rare, affecting an estimated 3.2 per 100,000 people per year.” This means there are about 250,000 people worldwide with this condition. In short, “rare.”

So what is it? I call it Cerberus who lives in my head, is chained to my neck and chews on whatever cranial structure is nearby (Cerbie for short..). But technically, Occipital Neuralgia is when one or more of the occipital nerve roots (which are located at the top of the spinal cord) are inflamed or irritated. The majority of the time, ON occurs when the largest of the nerves, the greater occipital nerve (GON), is affected. If the occipital nerves are already inflamed or irritated, touching the back of my head or neck could trigger ON. Moving my head in a certain direction can cause a flare. Even brushing my hair could sometimes trigger a “brief” and intense headache type pain that would magically transform into a hell of a migraine.

Given the “rarity” of the condition, it’s not surprising it took so many years for an official diagnosis. And yes, I have had doctors actually ask me if it was a “real” diagnoses because the condition is so rare. Frustrating, yes, but not surprising. The actual frustration came in trying to get a proper treatment for the ON.

I have seen my share of medical personnel: primary doc, neurologists, chiropractors and pain management docs. I have had all sorts of procedures ranging from nerve blocks to spinal epidural injections in my neck. I have done physical therapy, chiropractic adjustments, acupressure, acupuncture, dry needling, massage, a zillion meds including Botox, the CGRP’s… and nothing was helping.

The condition has been progressively getting worse. I was really trying to limit the amount of time I missed from work, but there were some months that were unbelievably hard to bear. So while pressing myself to go to work, I sacrificed family time and pretty much anything that would be considered “living.” Sure, I was existing, but “life” wasn’t an experience. I felt like a mannequin in a department store window watching the world go by.

So, well over a year ago I started doing research on the “migraine surgery.” I read the articles in various medical publications by Dr. Peled, Dr. Guyuron et others. I also read the books they published. In addition to that, it’s been quite a while since the surgery was pioneered and there have been some longer term outcomes that have been favorable. So the research continued for about six months until I felt comfortable enough in attempting to have the surgery. I didn’t know if I was a good candidate, but I needed to start down the path nonetheless.

There are a few doctors across the country who perform the surgery, but the closest to me is Dr. Amirlak at UT Southwestern in Dallas. I did a bit of research on him and found him to be a competent surgeon. Additionally, I have dealt quite a bit with UTSW and there’s no where else I would want to receive my, shall we say, “more advanced” medical care. All of the medical personnel have always been “tops” in my books.

So I was able to book an appointment and saw Dr. Amirlak the first time in October 2022 after filling out a zillion pages of paperwork / questions etc.. I liked him immediately. He took his time during the consultation, asked questions I hadn’t thought about and poked and prodded my head, which wasn’t painful, but wasn’t pleasant either. Hubs was on hand and he was not ignored during the visit, which I can’t stand. Nor can I stand it when I am the patient and I’m being ignored, but I digress. Dr. Amirlak advised he thought I would be a good candidate for surgery. Then came the wait.

And we waited.

Annnnnd we waited.

The big hold-up was insurance approval. I was willing to pay out of pocket, but this surgery being covered by insurance would be a huge help. Insurance approves <1% of cases. However, with my lengthy medical history and all of the other documentation….

We waited.

And still we waited.

January turned into February and I finally got the news that insurance had approved the procedure along with the surgery date – March 30th, 2023.

I’m writing this a little over a week out from surgery, but obviously I’m alive and this series will be periodic updates as to “how things are going.” Right now though, I’d say things are looking better.

So onto the show…. Welcome to The Noggin Chronicles ❤ Celeste


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