http://www.caringbridge.org/visit/albee/journal
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After 7 months, it is time to stop pretending…
by Albee Shanefelter, TN Survivor
8/19/2013
After 7+ months following the corrective brain surgery, suppose it is time to come clean with you all and myself on my true reality and status. I may not be doing quite as well as had previously advertised, but I do not think I have completely misled you as I have tried to be open as possible with my ongoing struggles. The net here is that I am far from “fixed” or “fine,” but I am much, much, much better than before surgery and I will be OK. Sadly I have been “pretending” to be better than I truly am and its starting to take its toll so at this point it’s time to be honest and open about my struggles.
For starters, I am far from TN free – at this point, after fighting back so hard to get “fixed” over the past few years, I am just now starting to working though my own acceptance that I have this Trigeminal Neuralgia (TN) disease. I have been so busy fighting that I never once paused to let the thoughts of this harsh reality sink in. Further, there is no cure ( today). There is little data being collected regarding TN (see petition to WHO to start tracking TN) and there is very little or no investment towards finding a possible cure. For my case, there are no quick ‘fixes’ left (ie procedures) to try as we havetried them all, therefore I am trying to process that in one way or another my struggles with TN will part of every single day for the rest of my time on Earth (we can add other planets if I decide to get into Space Travel down the road J)
The “tri” in TN is for the 3 TN branches – eye, cheek and teeth. My horrible, horrible ice-pick-to-the-side –of-the-head 9 of 10 pain level attacks that would occur daily were in Branch 1. In fighting back against these with multiple procedures– Rhizotomy#1 in Nov 2011, Gamma Knife in Jan 2012, MVD + Rhizotomy #2 in Jan 2013 – we have gone and damaged the other 2 branches (cheek and teeth). Dang it all to Heck!! This damage very well may be permanent, but maybe not…there is no crystal ball with this nerve stuff. The nerve itself will regenerate and when it does it could grow back completely healthy or it could come back more funked up than before, only time will tell. From what I understand, this will take about a decade, so strap on your seatbelt I have a LOT I want to accomplish in this forthcoming decade.
I am VERY grateful that the horrible, daily, extremely painful TN attacks I would have on Branch1 (ie icepick type attacks) remain in remission since the surgery! In that way, this surgery was a huge success. That said and to be honest, I still struggle through TN attacks in my teeth every single day. Think of it like the outer rotten layers of the onion were peeled back and tossed revealing smaller rotten areas within the inner layers. This TN pain was prob always there, but the other attacks were so bad I did not even note them. These TN attacks in my teeth tend to hover in the 4-5 of 10 pain level, which is very manageable, but even fighting these level attacks can be grueling and exhausting (I have to schedule rest breaks in my day). Further, depending on the weather, how much stress I am under and how much or little sleep I got that week, this nerve pain can spike to the 7-8 of 10 pain level. This pain is classified at Type2 TN pain or aka Atypical TN pain. Neither my current neurologist nor Hopkins treat for Type2 (medicate is the only real option they provide) TN. Hopkins did refer me to a specialist for Type2 TN up in New York in the case this ATN pain should worsen.
The 2nd big item to share today is they have diagnosed my “lingering after affects” as Anesthesia Dolorosa (AD), which is just an absolutely huge bummer as it is a very rare side effect of TN corrective surgical procedures. Guess I am *special* in that way…from others I have connected with who have AD there seems to be a common thread of having had multiple procedures performed and one of them being the use of the Gamma knife (which note Hopkins strongly opposes its use for anyone under the age of 90) though it is impossible to prove any certain procedure was the cause. AD is known for “active numbness” (if you google it, you will find the use of burning, dreadful and other depressing descriptive adjectives, but I prefer the term Active).
My numbness is only on the right side of my face. It includes part of right eyelid and under the eye, part my right nostril, most of my right ear, a good part of my right cheek, part of my right chin, the right 3rd of my tongue, the right 3rd of my upper and lower teeth and gums. These numb areas are very heavy and feel swollen – if you ever had a massive poison ivy outbreak on your face you will appreciate this sensation. Further, the numb areas throughout the day feel as if they are being tightened – my brain reverts back to the memory of my braces being tightened – so sorta like someone is turning a crank every hour to tighten my face. The numb areas inside my mouth burn severely once or twice a day (think biting into a habanero – what is strange I get the accompanying adrenal rush with it even though I did not eat anything spicy…go figure that one out…) and the outer areas (cheek, chin) sting like multiple bee stings. it’s so very weird, I pinch the burning/ stinging areas and I cannot feel it at all (they are numb yet they are burning/stinging), then I ice them with ice cubes or an icepack and BOOM, the stinging/burning is gone. Whack!!! I tell ya.
This does NOT compute at all in my brain and for the past 7 months I have been walking around thinking I was completely nuts and that I had MS or Lymes or Cancer or something I didn’t even know about yet, but now they have acknowledged my struggles and my symptoms align to AD very cleanly…lucky me, right? Lastly, the “mask” at times feels alive like my skin is pulsing and actually moving, it really FREAKS me out. The AD is its own monster and from the time I first open my eyes until I dose myself to sleep at night, it is there in one way or another. It’s going to take quite a bit of work to learn to accept this AD and learn to coexist with the TN+AD within my physical self for the next 50 years.
Speaking of 50 years, that is my frame of mind. Not sure if I will live that long (or if I’ll live longer), but I am using that as my baseline for planning. Instead of hitting the streets everyday (running), I am using the Fitbit and walking a min of 10K steps (aprx 5miles) EVERY day as walking is something I can do for 50 years (meanwhile I do go for a jog every so often to burn off the excess nerve energy but that is above and beyond my 10K steps). Also as I am relearning the golf swing I am trying to learn to move and rotate in a manner than I can do so for many decades without being the bad back or bad shoulder guy – may happen anyways, but at least I am trying. The main point being that 50 year planning is my framework.
One small note, I seem to have lost feeling in my left hand. Neurologist believes it to be unrelated and simply carpal tunnel, but Hopkins wants a full eval of my neck/back to ensure that there is no disc or neck/spine concerns. Meanwhile, it took forever for me to figure out why I was letting go of the golf club at the top of the swing…well there you have it. To counter this, I am using a squeezy, finger strength builder thingy daily when it goes numb to train my brain that just because I cannot feel that hand, it still functions just fine and there is NO reason for that hand to let go of the club J …I follow up with my PCP this week on that front…yeah!
Well, that is all for today and part of me still believes there is little value in sharing this with you and that I should just keep all this close to my chest putting it all into a bottle. By sharing, my hope is not to gain your pity nor sympathy, but to inspire others who must face ongoing, chronic challenges that their life is far from over. Sure they must make adjustments and live within their new limitations, but there is plenty of Life out there for them to experience. Who knows maybe I’ll author a book here or become an inspirational speaker or both…one thing is for damn sure is that I am not going to sit by and let this TN be the defining element of my life nor my legacy. That said, the Universe has spoken to me and I have accepted my prescribed fate to carry the torch for us all inching towards old age. For each and every one of you will all join me at one point or another on your own journey with your own struggles and challenges and when that day comes, I’ll be here with a shoulder for you to lean on.
Lastly, I am far from fine, but I will be OK!!!
Be Well and Be Strong,
Albee Shanefelter, TN (+AD) Survivor