Neurofibromatosis

Understanding the Invisible Shock

So throughout this exceedingly long and tedious health journey of mine discovering the true diagnosis, there’s been a lot of confusion regarding what neurofibromatosis actually is. So, let’s just dive in together.

So this is a side view picture of a female’s pelvic area, her name I will keep private for now. But, all those little white blobs you’re seeing are tumors. She’s got a lot, but for demonstrative purposes, we’re just gonna use this image for a visual example.

Every single white blob, is painfully positioned along various nerves.

Can I guess your first thought?

You’re probably wondering if the tumors are benign or malignant. Well, if I could just be frank and say……. malignancy is irrelevant. Although sometimes, nerve tumors can be malignant, one of the biggest issues at hand is mostly the pain aspect. It’s excruciating. I mean… it’s a tumor, a growth, ON your nerve. It doesn’t belong. It’s a foreign intruder. We deal with it every single day. The lightning, lava, stinging, sharp shooting, carving pain….. it’s almost constant. When it gets bad enough, painful enough, we seek a neurosurgeon to strip them off our nerve. They can’t just be injected, or shrunk down permanently, they strip them off, with a scalpel.

Guess what, they can come back. It’s embedded in our DNA, and no surgical procedure or treatment can 100% treat or cure it.

Of course we hope that we get several years of relief, but there’s no guarantee. So, what happens if we leave the tumors alone?

Depends. A neurosurgeon could tell you more specifically for sure. But I can personally tell you that when a nerve tumor is neglected, misdiagnosed, ignored, whatever the situation – it begins to affect our motor function. We can easily succumb to muscle atrophy.

Kind of sounds like being between a rock and a hard place, doesn’t it? How do you choose? How do you decide which path to go down?

Sometimes, there is no choice. Sometimes our surgeon encourages resection of tumors because the threat that they present is reason to remove them.

The area of the body that was previously riddled with copious, and various amounts of nerve pain……. well, it’s now gone. But now we are left with weirdly numb skin. It’s somewhat of a trade off. Sometimes. Depends on the surgical location I suppose.

The issue is, is the growth aspect of them. Our bodies are programmed to grow them, ALL the time. They never stop growing. The tumors still in the body, continue to grow bigger, without hesitation, without stopping. No one can remedy the speed of the growth, or the production of them. The ones removed, can also grow back, sometimes, with the quickness…… within a year even.

While one area of the body typically has more, we are always subject to more. Depends on the mutation we have.

NF1, NF2, and NF3, are the three main branches. However, there are new mutations under the wing of each distinct branch. NF1 is the most common, affecting approximately 1 in 3,000 people a year. NF2 affects approximately 1 in 25,000 people a year. And finally, the third branch, is the most rare and unfortunately the most painful, is NF3, or Schwannomatosis. Schwannomatosis affects approximately 1 in 40,000 people every year.

While my diagnosis is still unclear, as I don’t present any of the “markers” for any one branch, they’re throwing me somewhere in between NF2 and NF3.. mostly based on the sheer amount of tumors I have, and the reported pain that goes along with them. I’m still currently under the care of my neurosurgeon, undergoing analysis, scans and more testing. I’ll keep you guys abreast with that, hopefully sometime soon. But, so many of my friends and family are a little confused of the nature of my “condition.” Many call it a disease…. I personally don’t like using that term.

It’s a gene mutation, not a disease. If we are being honest.

Anyway, I hope this helps maybe better explain what neurofibromatosis is, and what it can consist of. Always a surprise, and never really an exciting one.

So, imagine these, growing on your nerve.

Muscular pain can be massaged out, knots can be loosened. But nerve tumors? They’re there. Always. Medication merely turns down the volume of the annoying painful noise that our nerves feel.

Carry on, and keep going.

#schwannomatosis #nervetumor #nfwarrior #fighter

6 Replies to “Neurofibromatosis”

  1. Leslie you are one very precious angel. I get chills when I read your blogs. I am so glad you are writing. God has special plans for you. I would love for you to come speak at our church sometime. I see you going around to High Schools speaking with the kids Would be helpful for kids that don’t know who God is.. Love Aunt Jeanne

    Liked by 1 person

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