**I do have some YT videos posted at the end of this post if you'd rather listen to me explain my story vs reading this long post**
As you've noticed I haven't been posting here or much on my YouTube channel. I haven't been feeling well since August, Tuesday August 26th to be exact. I woke up with deep, burning stabbing pain in my left ear coupled with facial pain, all on my left side. I tried to "ignore" it as best as I could for about a week then I ended up going to Urgent Care on my lunch break exactly a week after the pain started. They checked me for an ear infection etc, found nothing but gave me a RX for Sudafed and was told to follow up in a few days if it didn't get better. It didn't, so over the course of the next 5 weeks I was seen by 4 different doctors and was prescribed over 5 different antibiotics and steroids for an "ear infection" that didn't exist. My primary doctor finally sent me to an ENT doctor to figure out what was causing my deep ear pain.
I saw him in November (2014) and he did a thorough examination and confirmed that I did not have any type of inner ear infection and he felt my pain was a type of neuralgia. He scheduled me for an MRI to rule out a benign brain tumor, which could be the cause of my pain, pressing on my cranial nerves. Luckily that came back with no tumor but the question remained as to what was causing my pain. He started me on Gabapentin (which is a seizure medication) as it is known to help relieve some types of nerve pain, along with a muscle relaxer I had to take 3x a day with the Gaba. He also referred me to a Neurologist for further workup. Since I had to wait about a month to get in, he ordered additional MRI images the Neurologist would order anyway, just to get them done.
I didn't have the best experience with this Neurologist regretfully. I won't go into detail as my intention for this post isn't to talk negatively about anyone, but I was not really listened to and was told to double my dose of Gaba and he put me on another muscle relaxer. He did confirm the diagnosis of Trigeminal Neuralgia, which is what the ENT was suggesting. Let's just say that to state I was a medicated zombie for a few months would be an understatement. I couldn't remember things, had a hard time speaking, trouble driving most days, focusing was pretty much out the window and I don't even remember my birthday at all.
Long story short, I have an amazing friend who is a patient of Dr. Kim Burchiel's at OHSU in Portland, OR (about 2 hours South of where I live). Unbeknownst to me, she called his office and dropped my name so I could be seen right away. By her doing this she gave me a gift that I can never repay as I found THE best Neurosurgeon on the West Coast who has years of experience in Trigeminal Neuralgia and performs the MVD surgery (Microvascular Decompression) basically brain surgery, which is what I'm having on Monday March 2nd 2015. Dr. Burchiel is also mentioned and has some content in the book, Striking Back which is known in the TN/Neuralgia community as the TN Bible. This book has been a wonderful tool for me during my journey with this awful disease.
I was first seen by Dr.Burchiel on December 11th (most people have to wait months to get in to see him so I was truly blessed by only having to wait a little over a month). He went over my complete history and had me do an online pre-screening symptom quiz he developed which is a tool he uses to help determine what type of Neuralgia you may have. By the time I saw him, I was off all medications (I forgot to mention this above) as I was switched to Tegratol after the Gaba made me a medicated zombie, and I developed a severe allergic reaction, so I was told to stop all meds cold turkey. They weren't helping with the pain at all so I was happy to stop taking them. He ordered a 4-D MRI and an MRA to get the views of the nerves, blood vessels and arteries in my skull. I had this done on December 23rd and saw him the same day to discuss. He found a compression against my Trigeminal Nerve and another blood vessel running over the top of the TN Nerve. This is what has been causing my pain (I'll describe that below). So the plan at that point was to schedule me for the MVD. This has a 90% success rate and since I'm only 42, I'm a candidate for this and it's the best option to give me the best relief of pain for the longest amount of time. The MVD is the most invasive procedure as it's brain surgery, but it's the least destructive. There are other procedures that are less invasive but they are destructive, meaning you have permanent facial numbness and they only work for a year or so at best. So, with the whole process of insurance, referrals, OR scheduling time etc, I found out in early January that my surgery would be on March 2nd. As you can imagine I was bummed it was so far out and I had to endure this pain that much longer BUT I told myself that there are others who have had to wait much longer than I for the surgery so I stopped feeling sorry for myself and just went on with my life the best I could. And here it is tomorrow, surgery day. I can't even believe it.
What my pain is like:
Imagine an ice pick being rammed into your ear that is burning piercing hot and it NEVER.STOPS.HURTING, along with deep pressure and pain in the ear and head. Along with that I get these sharp, electric-stabbing type sensations all over on the left side of my face that NEVER.STOPS.HURTING when this part flares up, which is around a 100x a day...not even joking. My lips go tingly numb, my face tingles while being zapped and sometimes the pain drops me to the floor...literally to the floor. This is what I have been suffering with since August 26th, 2014. I did have a bout of this in November of 2010 that lasted for about 2 months (no ear pain at this time...just the facial zaps) and it didn't come back until August of last year. I was told that TN does go into remission at times and when it comes back, it comes back with vengeance and boy oh boy can I say that isn't a joke.
What triggers the facial zaps:
Anything and everything. There is no rhyme or reason to this nightmare pain at all. Various things that trigger it for me: wind hitting my face (the left side), my hair brushing against my cheek, brushing my teeth, chewing (eating in general), drinking certain beverages (mostly cold for me), cold air, the water hitting my face from the shower...it goes on and on. No matter what you do to protect your face or to prevent the next flare up, it happens.
What TN has stole from me/affected my life:
Having TN and this horrible pain 24/7 has seriously debilitated my normal day to day life. I have missed SO much work since this started (I am beyond blessed to work for a great employer who is very supportive and I have great benefits:leave/FMLA/disability etc). My daughter is a Freshman in high school this year, I missed all but two of her volleyball games (the noise is just horrendous when you have constant head/facial pain and I wasn't able to tolerate the all day tournaments etc). I stayed home for Thanksgiving, missed several family get togethers and as I mentioned above, don't even remember my birthday for the most part due to the medicated zombie-like state I was in. As you guys know I am a crafter and it is MY PASSION. I have had to take a "leave of absence" from all of my DT's I'm on and I haven't created anything new for months. I'm just not able to sit there and craft like I used to while I'm in so much pain. This is probably the worst part for me as crafting is my therapy, my outlet and I LOVE it.
How I "manage" maintain my life with TN:
First let me say again that I am beyond blessed with an amazing husband, kids (teenagers), family, friends, co-workers etc. that help me get through this nightmare that I am in right now. I have also found great support through several online TN/Facial Pain support groups and I know people in real life who I'm friends with that are also suffering with this. So we've become like this TN family of sorts. I do my best to get through my work day each day (I work full time M-F). Some days I can make it all day and most days I half to go home early or I just end up staying home, depending how bad my pain is. Some days I just can't cope and need to be home in my quiet space. I turn to my online support groups when things get really bad (having others who suffer with this is sometimes the best medicine as they get what I'm saying and there's no judgement when you "gripe/vent" about the relentless pain). I have a heat wrap that a friend made for me. It's one of those rice/husk type wraps. This one has some lavender in it so it's very soothing to me. It doesn't take away the pain but having some warmth on my zapping face is comforting. I have to say my hubby is THE best thing for me. He is beyond supportive, attentive and caring (I promise you I am not exaggerating...his mom did an amazing job raising her 5 sons). Steve always knows what to do, say or not say when I'm having my flare ups. He takes care of my every need and does so much around the house with the kids and normal day to day life stuff. My two kids, Kaley 15 and Tre' 19 are also amazing support to me..always taking care of their momma :)
So, here I sit on a sunny Sunday afternoon in Oregon getting ready to leave in a few short hours for the drive to Portland. We have to check in super early so we're driving up today and will get a hotel room so we don't have to worry about the traffic and being late for my check in time. Plus it will be nice to get a mini getaway from the house and get my mind off the surgery tomorrow (hopefully..lol). I have no idea why I waited till the last minute to post this but the timing just seemed right today.
I will post the videos below that I've done on my YT channel that are specific to my TN Journey. If you stuck with and read this blog post that turned into a short story, I thank you. I also hope that you will check back and see how I'm doing as I plan on doing updates as I'm able to do so. My recovery time off work is 6 weeks so I'm not certain how I'll be feeling since I've never had brain surgery before but I will do my best to update as I can.
Sad to say it will be awhile before I get to do anymore crafting due to my surgery/recovery but also because my craft room is all packed up and put in our storage unit (sniff sniff) as we're in the process of moving in the next few months and buying a home. Nothing like piling on a major life event during another major life event right??? I packed up my room over the past month (if you've watched my craft room tour video from last summer or have seen the pics I've posted of my room you'll know why it took me so long...lol) so I wouldn't have to try and do this after surgery since I can't be moving around very much for quite a few weeks and I wanted to be the one packing up my precious crafting goodies : )
Thanks again...I hope you will return to check in on me and I promise I will get back to scrappy posts and to ScrappinAbby as soon as I possibly can.
Keep me in your prayers and craft for me my friends : )
My TN Videos...