Hello everyone. I’ve never posted here, but want to share my story with all of you, and to give courage to those who feel like there is no hope.
Let me tell you that there is hope.
Before I get into my story, I MUST thank Dr, Alain deLotbiniere. He is incredible. He’s done over 500 procedures, and has anazing results, and bedside manner. He’s based out of bssny.com
I started like everyone else four years ago with stabbing pain to the face. It was very intermittent once a month and I ignored it. I wasn’t sure what to make of it. It came and went often.
Pain progressed, saw a dentist. Took X-Rays, teeth were fine. Went back 6 months later, saw a dentist, teeth were fine.
Went to an endodontist, scanned the teeth, nerves were fine.
Went to a maxofacial surgeon, tested for TMJ, no problems there.
Visited neurologist, MRI was inconclusive. I was treated for migraines. After several medications there was no relief.
Visited a primary care doctor and was suggested to see an ENT. Got a cat-scan, and no issues with sinus. Tested for allergies because I thought it was sinus related. Everything was clear except for known allergies (cats, grass). I was prescribed nasal spray which did nothing.
Then my fiancé did research online, found this forum, and connected my pain to Trigeminal Neuralgia. I then went to see a Neurosurgeon and got an MRI with contrast, and was diagnosed with TN showing symptoms of Type 1 and Type 2.
My pain was daily by this point in teeth, cheek, and radiated to nose up into the side of my face into my temple (right side).
If you could rate it on a 1-10 scale, it would wax and wayne between and 5 and 10 at its worst. A 10 meant I was curled up in a chair, wishing I was asleep, crying, having my fiancé worried sick and unable to do a thing.
Point to note - I also have a rare blood disorder called Bernard–Soulier syndrome (BSS), and made me unable to take even aspirin to handle my pain.
This. Was. Hell.
I had an MVD surgery scheduled for February 1st. Due to some mixups, my surgery got rescheduled to April 3rd.
Morning of surgery… I was crying, terrified, thought this was it. My Mom and fiancé accompanied me and held my hands. The doctor came in and as usual, soothed me quite a bit. Again, his manner is fantastic.
Woke up after surgery in ICU. Stayed there one night moved to a standard room the next morning. Staying in hospital one more day.
I ended up having a full artery pressing against my Trigeminal nerve, and it was pressing so hard my surgeon said it actually dented my nerve. I had 4-5 Teflon disks inserted.
I currently have pain around the incision, and my throat hurts from being intubated.
I’m proud to say that so far, I have NO Trigeminal neuralgia pain! Recovery is expected to take 1 month, and my stitches will come out in one week. I am so thankful to everyone who helped me and stuck by me so far.
For anyone out there that has personal questions, please message me. I want to help. There is hope. You will make it.