My name is Laurel aka shinglesdidit...
I have Geniculate Neuralgia (GN) stemming from Post Herpetic Neuralgia from a bad case of the shingles back in 2010.
The illness started with the worst earache I've ever had, three days later I came down with a rash. Interesting part of all of this is that my rash was on my left thigh. Nothing on my face or in my ear! When I went to the hospital I was just positive that the ER docs would find shingles there as well, but there was nothing, not even redness. It took me 18 months to get a referral to an ENT who diagnosed me with PHN. Then I had to convince my NP to refer me to a neurologist which took me another couple of months. My NP diagnosed me with 'Somatization disorder' during all of this...she promptly dropped that diagnosis once I saw the Neuro and he confirmed PHN and also suggested that I might have a rare disorder called 'Geniculate Neuralgia'. This neuro promptly retired and again I was at the mercy of my suspicious NP. Finally got a neuro an hour away that first diagnosed me with Trigeminal Neuralgia. I was enrolled in Pain Management and promptly got a nerve block (real bad experience) It did nothing. Back to my neuro for upped meds ie. cymbalta, tegretol, neurontin, norco, but with poor results. At one of these appts. I asked him to review the notes from my previous neuro as I remembered he spoke of a rare condition he thought I could have. Upon review of those notes my neuro changed my diagnosis and set me up to confer with a neurosurgeon to see what those options might be.
I met with the NS, he reviewed my MRI and then after talking to me he made the clinical diagnosis of GN and offered me a look at Gamma Knife surgery. I researched it with family and then made the appointment to meet again with that NS and his partner w/Gamma Knife, a radiology oncologist. At this meeting both doctors were graphic with the possible side effects, I think trying to scare me but I was in so much pain at the time (on purpose did not take med) that they a l m o s t scheduled me. The whole PHN caused GN was the deal breaker. They told me that they knew of only 15 cases (me 16?) worldwide of my particularly rare case. That being that I actually had shingles on the nerve in my brain as well as on my skin/limb on the same side but no where near each other.
I left in tears of course and figured I was going to been on narcotics the rest of my life...which was already taking a toll on my other systems.
I came home desperate for some help or support with all this because even though my family validates me, rare conditions are hard to swallow, even for me.
I had a death wish by this time but God wasn't biting and I couldn't tell the ones I love and live with( 9 of us together) about the way I was feeling. God brought me to BensFriends I believe and within a couple of days I was lead to the DOCTORS tab and searched out Gamma Knife NS's in my state and by golly, I got hits! I researched the hits and chose one and wrote to her via the email she provided and gave her the details of my GN and it being PHN but without herpes on or by the outer ear. She wrote back within two hours and told me "Yes, I can help you! Call for an appointment." I couldn't believe it! I gave the family a quick survey and they agreed it couldn't hurt to see her. I got an appt for 5 days later. Her team put me through the works with new MRIs etc, checked my eyes and nose....bunches of tests over 2 days. The proof was in the different types of MRI's they did as they could see scars on the geniculate nerve. Hallelujah!
From there I saw 'her' radiology oncologist who confirmed diagnosis and told me he was on board with giving GK a try for my GN but reminded me how rare all this was and that it could take upwards of 6 months sometimes for the radiation to do it's thing. I have to admit my stomach dropped right then as I really wanted to wake up cured somewhat or a little.
I had my GK surgery April of 2013 and after 6 months of no change in my pain (feels like stabs to the eardrum 24/7) they have deemed it unsuccessful. I want to say here that not one neuro that I've seen for this has ever mentioned Ramsey Hunt. I wonder if that's because I didn't have any herpes in the ear? Anyway... In Oct/2013 I began P-Stim treatments that consist of 3 acupuncture tacks poked into nerve paths on my outer ear, to leads attached to a battery pack. When all are glued/taped/attached/switched on, I receive bee sting like shocks randomly over the next 72/84 hours. The thinking behind these treatments is to produce endorphin rushes similar to the ones we get with our GN pain, and to train the brain not to react to that pain stimuli. It has worked very well with her TN patients.
I presently have # 5 attached. I have had different side affects with each implant. They have switched ears as the nerve paths/blood flows are the same on each ear but it hasn't seemed to matter. I had the pain exacerbated by these, get vertigo to the point of vomiting, headaches/migraines, and it interrupts my already crummy sleep pattern by stinging me randomly throughout the night.
We talked this time about how much longer we're going to do these treatments as I can have up to 15 but why, when they're not working. We've decided to keep these up until April and then talk to our RO about possibly doing another GK surgery and this time upping the radiation slightly as the first time they game me a dose 20% less than they give the TN patients.
I'm hoping that he'll agree to give it another try. The risks go up and I've been very fortunate not to have had any from the first try at GK. They are still very nervous about the whole PHN and fear there could be other scars that the MRIs don't see thus possibly fixing only part of the problem...that would suck! But I would take any reduction in pain....this has gone on for too long and all the medications that I've been taking for this and for other diseases I have, are causing other health issues and I don't want nor can I handle, any more health issues! Know what I mean? I'm in line for psychotherapy and my number could not come up soon enough!
I guess I could have just said..yes, they're definitely related though doctors have a hard time with the GN diagnosis period. But...I put it all out here instead...that's how I roll I guess. You can go to my profile and see pictures on my journey and some more info that I couldn't fit in here. HAha!
I hope you're getting somewhere with your treatment. Feel free to pick my goofy little brain any time.
Be sweet to yourself~Always~Laurel