How Can Brain Surgery Be A Blessing? - My Story

Neurosurgery. Brain surgery, to be exact. Not exactly the words most people want to hear. The idea of having a “C-incision” all the way around the ear and a quarter sized hole drilled in the skull does not sound particularly appealing for most. It is to me. On July 1, I was blessed to hear that I was a candidate for a surgical procedure called Retromastoid Craniectomy for Microvascular Decompression. Why am I blessed? Let me take you on the journey.

About a year and a half ago, it all started in the shower…don’t get a visual…please! While washing my hair, I started to notice I would get a sharp “twinge” in my teeth. Super quick – fraction of a second. I ignored it at first, but as it worsened and progressed to developing when I brushed my teeth and removed my makeup with coconut oil, I talked to Garry about it. Since I had an upcoming appointment at my dentist, I decided to talk with him about it, as I was afraid I was having a significant problem with one of my molars on the lower right. I need to give a shout out to him, because Dr. Bayliff in Roxboro caught my condition early. He said, “Your teeth are perfect, but I think you could have a condition called Trigeminal Neuralgia.” Now, I consider myself a medical aficionado (ha) and worked in a medical office for several years, but I had never heard of this diagnosis. Upon researching it, I thought there was no way I could have this condition, because the symptoms being described were horrible. I didn’t have any of those. Here are excerpts from https://www.ninds.nih.gov/trigeminal-neuralgia-fact-sheet:

Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head. TN is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) The typical or "classic" form of the disorder (called "Type 1" or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.  These attacks can occur in quick succession, in volleys lasting as long as two hours.  The “atypical” form of the disorder (called "Type 2" or TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than Type 1.  Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating. 

Pain varies, depending on the type of TN, and may range from sudden, severe, and stabbing to a more constant, aching, burning sensation. The intense flashes of pain can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), brushing teeth, eating, drinking, talking, or being exposed to the wind. The pain may affect a small area of the face or may spread. Bouts of pain rarely occur at night, when the affected individual is sleeping.

TN is typified by attacks that stop for a period of time and then return, but the condition can be progressive. The attacks often worsen over time, with fewer and shorter pain-free periods before they recur. Eventually, the pain-free intervals disappear and medication to control the pain becomes less effective. The disorder is not fatal, but can be debilitating. Due to the intensity of the pain, some individuals may avoid daily activities or social contacts because they fear an impending attack.

I distinctly remember thinking, “This is NOT me! Mine is only in one little place. It gets better when I get a chiropractic adjustment. It is fleeting and does not hurt that badly…..and what do you mean WIND can hurt someone’s face?” Thankfully, however, in my stubbornness, I still informed my neurologist so that she would have it in my records. Well, fast forward to April 22, 2022.

I was at the beach, by myself. Garry could not come because of work, and I had a photo shoot. I was sitting on the sofa, and all of a sudden, I started having extremely intense pain in my face – upper jaw, lower jaw, and in my ear. I went to the bathroom to get in front of a mirror – stroke test…F.A.S.T – was all I could think…

Face (check my face and stick out my tongue)

Arms (raise my arms over my head and make sure there is no weakness)

Speech (make sure I can talk normally and my smile is symmetrical)

Time (call Garry and Cameron and tell them what is going on)

After a few minutes, the pain subsided. On Monday, April 25, I was on a telehealth call with my neurologist at Duke. She confirmed her belief that the Trigeminal Neuralgia had reared its head. I was immediately put on nerve blockers, but she said that we would have to get an MRI as quickly as possible to rule out all kinds of other issues, to include a brain tumor….wow….I will not lie and say that I patiently waited for the MRI results. (Ok, y’all, stop laughing! I am anything but patient.)

With thanks to the Lord, I can say that my results were negative for all “bad” outcomes. However, they indicated a structural cause for the TN, and we were praising God for that, as well! I had the blood vessel that was rubbing against the nerve, and this was the cause of the problem. Why praise God, you might ask? Some individuals have no known cause for the TN, and like me, they have to go on medications to try to control the pain – but they have no hope of getting off. I started on Gabapentin and had to keep ramping up my dose, until I cried “uncle”, telling my neurologist that we were going to have to try something else. She put me on Lyrica, and although the transition was very painful, it has been managing my pain very well – until the night of my pre-anesthesia clearance, as coincidence would have it – one week before my surgery.

September 6, 2022. That is the day! I am praying to be part of the 85% efficacy for this procedure that will basically go in between the nerve and the structures that are irritating it and put Teflon pads in place to cushion it and stimulators for the nerves. I am getting ready.

I choose to be thankful (1 Thes. 5:18). If I have to have part of my head shaved and a big “C-incision” around my ear, I can “pretty”-protect it. I have had precious friends talk me through ideas and offer suggestions or to help me find head scarves (thanks Lisa, Ashley, and Susan for the support). We ordered an adjustable bed, and if I am recuperating, I am grateful that I can do it in comfort (I won’t tell you how old our king pillow top was…) and with my baby girl, Bella, beside me. I have prayer warriors in my Sing and Study with Lisa ministry group. I will have Garry and Cameron by my side, and Ma and Pops who are willing to help in any way they can. God is good, and as one of my favorite songs explains better than I can, I give the outcome to Him.

Even If (Mercy Me)

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

It is well with my soul
It is well, it is well with my soul

Songwriters: Bart Millard / Ben Glover / Crystal Lewis / David Garcia / Tim Timmons

It IS well with me. I have faith in His will for my life. I hope this storyteller’s journey is a help to you in some small way.

Blessings ~

Lisa