Nerve Tumors – Time You Know The Real Me
Sometimes it’s still so surreal to me to finally be where I am. For the better part of the past almost 7 years, mentally and physically, I had been in this limbo of uncertainty regarding why my health was noticeably declining with no explanation or insight as to why. Why was a 22 year old female who was seemingly healthy, relatively fit, attaining inner calf muscle wasting? The lack of motor function in the lower body, the poor balance, not able to do something as simple as a calf raise – on either side, OR with both calves “working” together. A literal physical impossibility for me, regardless of the simplicity of it for seemingly everyone I knew. It was the most frustrating thing, and it baffled me. The kicker? I asked many doctors. I inquired with both OB/GYN and previous primary doctor, 2 different chiropractors, 4 different neurologists (2 of them even working together,) one neurosurgeon who told me I had an inflammed muscle in my lower back, and a spine doctor who told me to go to a pain clinic. I baffled them too. No one knew… and a couple of the ones who didn’t know, seemed to just outright NOT care. Want a hint who? I’ll just tell you, because, I’m not bashful about calling out those in the medical field who would rather see a patient in pain then help. It was the one neurosurgeon and the spine doctor. What’s even more comical? I presented a possible diagnosis – and both were incredibly quick to not only debunk it entirely, but condescendingly dismiss me from their care. I’m not complaining, because as it turns out, I know my body better than they ever will. After all these years, I established a new primary care doc, and he was the only one to hear me, and ordered the MRI that was needed.
All these years I have had a relatively superficial place on my lower back, left side, close to the S.I joint, where there seemed to be a ‘mass’ that I kept bumping. Every time I got in my car, I bumped it. Laying down in bed on my back, I still can’t put pressure on it. It’s like an electric shock and I gasp EVERY time. It’s mega uncomfortable, and has seemed to worsen with each passing year. I nicknamed that one, the “supercell”. Supercell is still with me, for now. While that one has, and is still currently causing issues, the others seemed to scream louder. September 25th of 2017 was my last mountain bike ride. I noticed that I no longer only had the muscle wasting, poor balance, and no motor function from the ankles down – but the nerve pain kicked up to a whole new level by November of 2017. By February 1st of 2018, 2,100 mg. of Gabapentin barely touched the pain. It’s, almost indescribable. Riding in a car for any long period of time, and sitting in general became a daily challenge that I masqued to the best of my ability. I’ve been an Esthetician for almost 10 years, this year makes a decade, but last year, was the most heinous year I’d experienced in my career, and it wasn’t because of career drama. Sitting, that’s what estheticians do.. and we do it all day long. All of 2018, every time I sat down, within minutes, I had hot lightning that would shock and sting, pulsing that sensation all around the left side of my hip, continuously. Sitting for an increase of 10-15 minutes, the tumors induced a ‘serrated knife” sensation that ripped down my left groin and down my left thigh, pretty consistently, and regardless of what I felt, I needed to maintain stillness of my hands. My clients never were the wiser when I experienced surges. I guess after months of feeling the tumors grow and mentally shifting the focus to, “I have to be strong, the solution won’t come quickly, and I need to work.” You become indifferent to the pain. Sarcasm and joking are your coping methods. You just.. learn to live with it, to some degree. But make no mistake, with each passing month, it worsened, and quality of life decreased. On a scale from 1-10, the surges while sitting, ranged anywhere from a 3-4, to an easy 7-8. While worse while sitting, it even happened when standing. There’s never a warning sign, you never know when a tumor will produce a burning pull on the muscle it’s next to, or when it decides to send a hot lightning pulse down the entire length of the nerve that the tumor is on – and you just have to maintain composure. It’s not a back pain issue, and it’s not a leg ache issue, it’s a tumor on my nerve issue – and honestly? Any NF (neurofibromatosis) person who battles this, is skilled at hiding (when we need/want/have to) the lightning storm that’s constantly going off inside our bodies. Thankfully, I was always home at night time, because by the afternoon, it was a slippery slope towards the more intense surges. Nighttime was always the worst. The intensity of some of the waves would bring me to my knees at times. The only relief was a hot bath, and sometimes, two to three baths all night long was necessary to get a little relief. My husband sat with me through every scream, all the tears, and every night that seemed to never end. He never left me alone to deal with it, not once. Heating pads help, but full submersion in hot water brought the intensity from an 8-10 to at least a manageable 2-3. It would lessen enough to where I would get another hour or two of sleep. Going to bed at 7:00-7:30 every night, puts you on a terrible sleep schedule, but, anyone who takes Gabapentin, and especially high doses, knows the drowsiness involved. I did okay during the day most of the time, but by at LEAST 8:00 p.m, I was gone. So needless to say, early to bed early to rise, became my mantra. This girl started her days at 2:00, 3:00, 4:00 a.m – every day.
This lightning storm? Pretty accurate.
After June/July of 2018, guess who finally has her diagnosis? This girl. After one more “last hope” MRI of my left hip in April of 2018, there they were! Not one, but many nerve tumors. Long story short, that landed me with my neurosurgeon in June, and then later, the head geneticist of Georgia for genetic testing in July of 2018. There are three different branches of Neurofibromatosis. NF1, NF2, and NF3 or Schwannanomatosis. NF is a gene mutation. It’s typically genetic, passed down from one parent or both. But let’s be honest, if you make it to genetic testing, they scan your entire family tree. Here’s where it gets interesting – I’m the lone wolf in that regard. Yep. just little ol’ me. So July of 2018 is when I had my genetic testing, they ran some blood panels scanning for specific genes, which, lo and behold, my blood doesn’t reveal. Geneticist explained that my mutation isn’t present in the bloodstream, but rather in the tissues itself, so they recommended a biopsy to classify me under the specific branch. He recommended I follow through with the surgery, so that a biopsy could be attained to positively classify me under one “branch.” My surgery didn’t happen until November 28th of 2018. And boy was it a doozie.
Fifteen. Fifteen tumors resected from my sciatic and femoral nerves… at one time.
So, initially, my surgeon was going in after just ONE on my femoral nerve, but when I went under anesthesia, my surgeon consulted with my husband about how many there actually were. After studying my films again, he told Dell that I had clusters on not just the femoral, but also had a good little cluster of these bad boys on my sciatic nerve, and he would just be inches away from those. He expressed to Dell that he felt confident he could remove more than planned, and that if he didn’t get those now, they would only continue to grow, needing to be removed at a time, probably sooner than later. Dell said, “If you can get them out safely, yes.” So, he did. Five hours later, I wake up in recovery with the news that they removed fifteen! So, needless to say, I spent the night in Emory that night.
This is the morning after my surgery. By the way, had no idea where the entry point was, so this massive incision was sort of a surprise!
The cords you see are part of the second half of my procedure. So, with all the tumors that were removed, my nerves were, basically well preserved hamburger meat, (literally felt like I had a chainsaw rip apart my insides.) So, a “spinal stimulator” was temporarily implanted, not into my spine, but into the femoral and sciatic nerves. Those cords were connected to a receiver box that was taped to my side. That box corresponded to a handheld remote that I controlled manually. Think of it like an internal tens unit. The pulses helped heal, and regenerate the nerves that were operated on.
This, “cords coming out of my leg and stomach” thing lasted for seven days. At the end of seven days, I was ready to get that crap out!
My pre-planned three week recovery turned into a four week recovery, and I give all the praise to the Lord for guiding my medical team’s mind, and hands, as I later found out that I was the first to have this many removed at one time. Furthermore, my recovery. The first two weeks were rough, but it got better every day. I was back to work by January 2nd.
I’m not clear of them, in fact, those fifteen tumors came off of just the front side of my pelvis. I’m belted with them, and always feeling referred nerve pain surges body wide.
I’m unfortunately not rid of them completely.
Regretfully, about two weeks ago I began feeling activity around some other superficial tumors. Those guys, candidly speaking, are all along the private parts. Those, much like, ‘supercell’, hurt when bumped (which is every time I sit down,) but even when they don’t get bumped, they produce their own special sensations. My tumors never disappoint – always keeping things interesting and lively, these guys pinch most of the time. Almost as if someone were on the inside of my skin pinching as hard as they possibly can. When they aren’t pinching, they shock. The pinching is annoying, really uncomfortable, but able to be concealed by moving more, or I’ll just leave the room. It’s embarrassing jumping and twitching in public, ya know? Again, I’m blessed with these too, as my worst episodes occur at night. About the worst of the episodes with these are what I would compare to a power line explosion almost. Like when you see a power line break and sparks shoot everywhere? I jump and gasp, occasionally dropping something. But it only lasts for a second. It’s over with pretty quick, and the lingering sting is manageable.
Regardless of my little gene mutation, I still consider myself blessed!
“And we know that all things work together for good to them that love God, to them who are the called according to His purpose.” Romans 8:28
I smile, and keep on marching!
I’m called to this battleground. It’s an honor and privelege to carry this, knowing that Jesus bore way more for me. This mutation, discomfort, and inconvenience I experience now, isn’t Heaven ordained. It may be the enemy’s attack, but make no mistake, the Lord is working through me to accomplish far greater things. I’m mentally, physically, and spiritually stronger because of my affliction. I will be prepared for my war one day. But in the meantime, Jesus is orchestrating victories, lining up miracles, and opening eyes to the Sovereign Healer. I’m only 29, so the Lord and I have much more to accomplish!
#nf #nfwarrior #schwannanomatosis #nervetumors #onedayatatime #keeplookingup #romans8:28 #jesusislord #daughteroftheking #faith #emoryhospital