One year today since my MVD…
April 9th 2013 I had MVD for my progressive / med resistant TN on my left side…I’m bilateral but left side presented predominantly TN2 as it worsened it included TN1.
My right side remains quiet…
My entire journey to & through MVD is documented in the MVD group, including my surgical report, updates etc.
http://www.livingwithtn.org/group/mvds/forum/topics/my-experience-with-mvd
Currently I’m on 3 meds Tegretol CR, Dilantin & Keppra.
My pain worsened around 5 months post-op and has gradually declined since then.
Do I regret having MVD considering my outcome?
Absolutely not!!
Despite my current circumstances which are pretty reminiscent of pre-MVD, I am still better post MVD. Not much, but in the grand scheme of things it’s still better!
I’m unable to work, drive or function much due to high pain or high level of drugs…
BUT I still have a few hours here and there with minimal pain.
( pre MVD it was 24/7 non-stop)
Last week I had one whole day PAIN FREE!! It was amazing…I can tell you I went over every single thing I ate and did the day before to try and find the secret magical answer to that pain free day, to no avail…it was a gift. Last time that happened was probably August/September 2013.
I’m no Pollyanna, nor am I happy, happy joy joy every single minute of everyday.
To be honest I’ve really struggled emotionally. It’s been an incredibly rough ride…
I hate being so medicated…I hate that I am still isolated so much and restricted in my ability to function. My GP, my Neuro as well as my Neurosurgeon agree that any further procedures could actually worsen my TN.
I trust them and they have been very supportive and accepting of all the research I do on my own.
We’re still trying the “medication dance”, different ones, varying doses etc to hopefully find a balance…this in itself takes a lot out of me, currently taking a break from all that.
I’m losing my Neuro of many years as he’s closing his practice, in August I will see a new one that I’ve met once before for a different issue a few years back.
I’m hoping he might bring a fresh perspective …
In the meantime, I’m not “woe is me-ing” as much and I’m exploring other holistic possibilities again…
I continue to use my daily meditation and Buddhist teachings to guide me and remind me how to get through each day, my faith in God, my husband and my children and my fur baby. ALL of these things give me reasons to hold onto HOPE.
Somedays the hope is barely visible through the relentless pain and med fog, but I try so very hard…I’m still learning the whole acceptance thing…but one moment at a time is what I can currently handle and that’s ok.
I’m continuously grateful for LwTN and the friends I have made here, please know that I try very hard to participate as much as I can… I continue to feel less alone because of our shared experiences, and for me there is some comfort in that.
As always… ((((( hugs )))))