The Inexplicable Reality

Nerve Tumors – Here We Go Again

Drift back in time with me, if you will, to November 28 of 2018 when I had fifteen nerve tumors removed from a small portion of both the Femoral and Sciatic nerves. Glory to God, His Hands on my surgeon and the team, I came out of that surgery with a fully functioning left leg, and no drop foot. Although it was a grueling four week recovery, I was back at work doing my thing by January 2, 2019.

In case you guys needed a recap….

So aside from a half of my left thigh being oddly numb, things got better for the most part. Even though I had other tumors, they seemed relatively quiet, and all in all, I was mostly pain free. The serrated knife down the left groin, and the hot lightning down the left thigh seemed to be gone, and I found myself able to kind of sit comfortably for the first time in over a year. It was nice! I had hope. I had looked forward to maybe kayaking down the Toccoa River this Summer, or maybe taking a couple short car trips, maybe even Florida. Would have loved to have seen the beach this year being that I missed it, or ANY vacation last year. That humid warmth feels so good on spazzed out nerves. I definitely knew that biking still wasn’t a possibility due to the tumors in the nether-regions, but, was more than willing to move forward in positivity, despite the occasional surges I felt, not only, “down below,” but also in the left sciatic nerve. It’s been whacked for years, but, regretfully has gotten worse. Still yet, when a large portion of pain leaves, you tend to try and overlook the other pains – and secretly hope they don’t increase. You try and move forward.

But it kept increasing.

As awkward as it is to even bring it to the forefront, I’m a rarity in regards to the amount of tumors I have, and in the location I have them. It’s both embarrassing, and terrifying, but I’m about to lay down the realism for you.

Throughout the early months of 2019, I was willing to ignore the hot lightning up the rectum and vagina, the lava and/or wasp stings under my flesh all around the left bum cheek, outside of the hip, and more frequently, on the left bum cheek more in the proximity of the sit-bone. The shock, sting, and pinching sensations all around the lady parts clear back to the rear end, could no longer be ignored. Not only that, but I had begun noticing some similar surges in the left groin that I had experienced prior to surgery last year. Not near as intense, thank God, but, too familiar and I couldn’t shake the gut feeling that it was too similar for comfort. Feeling that same shock, sting, and burn sensations near my foot-long incision were unnerving, and I wondered what was truly happening beneath my skin’s surface. From time to time, it felt like someone reaching in with their index finger and thumb, grabbing a cluster of my nerves and tendons, and pinching as hard as they could. Could it be that the tumors that were removed were seriously coming back six months later? THIS soon? It was a hard pill to swallow, but knew that I needed to be realistic and understand that the possibility and probability of regrowth could always happen… but trying to differentiate between tumor growth sensations, and nerves reconnecting skewed my perception of what was truly going on. But, one night, several weeks ago, my husband was sitting on his side of the couch, and our dog on my side of the couch, so, I sat down on just the edge to pet Tippet. I sit there for less than 20 seconds and BAM, hot lightening surges down my left groin and I gasp and stand up immediately. I just looked at Dell, and he stared back at me in silence. We both knew what I felt based on my reaction, but with no confirmation, we both tried to dismiss it, and move on.

The surges kept happening, some in the old places, and many more new stabs and stings, and far more intense fire and lightning surges in uncharted territory. Before Spring I was seeking out a new Pelvic MRI, which my surgeon successfully managed to order for me, after seeing him on April 10th. I had my MRI at Emory on April 29th, and here’s what it revealed……

The previous blog where it cases the young female with all the tumors, if you guessed it was me, you were correct! So, let’s see some more images shall we?

So, probably goes without saying but this is a frontal view of my pelvic area. All of those little white blobs you’re seeing are nerve tumors.

Again, the pelvic area. Don’t be weird. This is something you would see in a medical journal, it’s basic anatomy, I just have some…… additions. Imagine sitting down and crushing these guys.. all the time.. compressing the tumors on the nerve sheath more than they already are. It’s not even upon sitting down, it’s any movement that I do, bending over, squatting down, twisting to the side. Any time I move muscles around those tumor- riddled nerves, I get lit up. Hang on, we aren’t done yet.

So, imagine sitting down, ya know… multiple times a day, and you know you will be absolutely SMASHING these tumors upon impact.. as if they don’t hurt by themselves, your large rear end and all it’s adipose literally compresses these tumors to the point of….. uncomfortable tolerance. You just get used to it.

So many people confuse what I have for “back pain,” or some type of spinal issue. The short answer is, it’s not really a spinal issue, it’s a “tumor on my nerve” issue. Yes, while one area is loaded the most right now, I get lightning and stinging in the abdomen, beneath the rib cage, sometimes I get hit in the middle of my back around the Latissimus Dorsi muscle on the left side. Now it’s shocking me in the left shoulder blade. I even, periodically, feel it shoot down my arms. I have more tumors than what’s currently visible. Convincing my insurance that a seemingly healthy 29 year old female needs a full body MRI, is somewhat of an act of congress. I’ve apparently not jumped through enough hoops. I digress.

There’s been many to assume it’s curable by some type of “treatment.” But the reality is…. it’s a gene mutation. It’s embedded in my DNA, I was born with it, and it’s just mutated to what it is now. In my lineage, I’m the first to have any signs and symptoms. I’m the pioneer of this thing, and I’ll never be rid of it, unless God changes my mutation.

After my surgery, I have had many who have asked if I’m “feeling better.” I wish that were the case. It’s not a situation of undergoing one or two surgeries for resection of tumors, and “wha’lah, you’re fixed.” Chances are, we have countless more, and in some cases – hundreds more… known and unknown. It’s just a matter of when to do something about the tumors that are causing pain… and in the meantime, praying that we don’t grow any more.

Some people are under the impression the tumors are either benign or malignant.. and the evaluation of them being benign are a reassurance to them. They CAN be malignant. Thankfully none of mine have been malignant thus far, but malignancy isn’t the issue. It’s the pain that’s the issue.. and it’s never predictable when we will get hit with a surge. How we react and how we control our reaction is THE daily struggle. Not twitching in public, trying not to gasp, or resisting the instinct to jerk and let out some type of noise because we get caught off guard by the internal sting, or the shock that rips through the entire length of the nerve, is our daily struggle.

This guy… is awesome. This is Dr. Nicholas Boulis. He is without a doubt THE coolest surgeon/doctor I’ve ever met. This is the man who removed fifteen nuerofibromas at one time, last year, and who is still to this day personally guiding my medical care, by now organizing a team of specialists in various areas. I’ve never been under the care of a physician who has incredible skill and the confidence to back it up, but isn’t elitist in any capacity whatsoever. He isn’t afraid to bring in other medical minds to encompass any and all treatment options, he literally exhausts every avenue to ensure the best care, and the best result for his patients. He’s truly a refreshing breath of air in this crazy medical realm, and I feel blessed to of been placed in his thoughtful care.

After seeing him today, and him going over my MRI films, he was able to break a lot down for me and clear up some confusion and questions that my husband and I had. Thankfully, the MRI reveals no new growth on the femoral nerve. Which is great news. So, now we are just dealing with these many lovely little, and not so little tumors currently visible.

He is proposing several options for me to consider. Slicing the private areas isn’t at the top of his list of desires due to post surgical numbness of that location, which is great for me, because not super loving the numb skin thing. And, if we’re being honest, there is a large section of my thigh that’s not been washed in like, seven months so……. needless to say, kind of can’t just choose to not wash the private areas. I mean.. I’m a hippie, but not that much of a hippie. Come on. SO, being that neither one of us are down to opt for the route of surgery right now, he is proposing a “DRG” spinal stimulator. We would try a temporary one first, to test the efficacy of the pain relief. If it’s successful, then, implementation of a permanent one would definitely be considered.

Hey, if it helps get me off memory killing Gabapapentin, then I’m all for it.

Dr. Boulis is reaching out to a GYN, and several others as well, doctors and surgeons who may see more similar cases such as mine. I will also be set up with an oncologist who has a special interest in Neurofibromatosis, including the diagnostic aspect of it.

So, there is still much yet to be discovered and decided, but I feel confident the Lord has placed me in the hands He wants me be under. All will come in time, and in His timing.

This journey has been a trying one. Honestly the roller coaster of emotions and wavering mental strength to handle this, has been one heck of a ride, and I’m sure I’ve not even begin to experience all the highs and lows yet. My blog page is called “Faith with a Limp,” not only because I do in fact have a limp, or a “hitch in my giddy up,” if you will….. but my faith teeters on imbalance and indifference at times as well. It’s human nature to want to sink beneath the crushing weight of doubt, and doom and gloom. I think as humans, all of our faith has a little bit of a limp. Can I get a witness?

Be slightly unbalanced, teeter, cry, or get mad for a minute if you need. But don’t stop LIVING. And don’t permanently let this life shake you of your faith. The course may be rocky, it may be steep, and it’s gonna scare the crap out of you from time to time. But don’t let it knock the warrior out of you. Keep pushing, and keep climbing.

A wise man once told me, we should live moment to moment. Go revel in your moment. Conquer something. Challenge your strength, and your endurance. Be proud of goals and accomplishments, no matter how small they may be. Go tackle life and give it a run for it’s money. Go LIVE!

#nfwarrior #neurofibromatosis #schwannomatosis #emory #drboulis #neurosurgeon #neurosurgery #nervetumorspecialist