So, it’s been almost a year since my last post. What a whirlwind of events have occurred. First, I’m one year sober again. I have 6 years sober except for that one pain day when I blew it. Back on that saddle!
The events in the past 6 months have been riveting. On November 30th, I had high hopes to see “THE doctor” at Johns Hopkins for my trigeminal neuralgia. I was shocked he had no options for me, but my pain is quite atypical as a remaining, debulked brain tumor is sitting on the nerve. He told me that “there is a doctor at Duke doing some really innovative things.” Got the referral, but needless to say, at that point I found a quiet corner at Johns Hopkins main hospital and sobbed. I thought there were no solutions.
But – DUKE! Amazing. My husband (and loving support, caretaker and chauffeur) and I travelled the 3 hours to Duke. Since then I’ve been back to the Tar Heel State more times than I can count. But I’m finally pain free! Here’s the situation:
So, there is a device called a spinal cord stimulator. It’s old hat for many with lower back/thoracic/lumbar pain, but Dr. Lad at Duke has been more recently trying inserting these in the cervical spine – in my case, for chronic facial pain. And it worked!
It was however, an ordeal and quite invasive. First, a surgery with a weeklong trial to see if it helped. I was reporting 80% pain relief (the company Nevro’s reps called every day to assess my pain for a week, and make the decision to insert device permanently if you have at least 50% relief), so a week later they inserted the device. This involved putting a battery pack (like a very large pacemaker) into my right lower back. It felt like raw meat for a few days, I moaned like I was in labor, but powered through the pain and after 2 weeks it subsided.
So, great! It was a success. But NO. I was having some pain and thought it just wasn’t as helpful as I became more active..but then my post-op xray showed that the entire electrode wire lead worked itself out of my apparently stubborn neck! Well, that explained the pain. But I have to have a revision surgery a week later. Thank goodness my job is super supportive.
During the revision, Dr. Lad wanted to make sure this bitch stayed in place, so he had to remove some bone to adhere it really well. HOLY CRAP – I never experienced bone pain and as people say “It’s an entirely different pain that cannot be described.” I don’t know if you recall the antiquated 80’s video game “Dig Dug”, but that’s what it felt like!! And in my neck. Lots of pain meds, and a very difficult ride home as every bump made me whimper. (My poor husband). It was another hard week. But no – really – bone pain is an entirely new tier of hell altogether. I’m sorry if you, dear reader, suffer from it!
But now – I’m not in pain, physically or nerve. It’s amazing to have no nerve pain, I don’t know what to do with myself! I now have hours in my day that I missed the past 10 years as I would come home from work in extreme pain and had to take larger amounts of xanax to calm the pain, which worked. I’m now getting off all of these stupid nerve pain medications and xanax, as I don’t need them anymore. It’s lovely.
I’m almost out of the woods. Unfortunately I’m wearing a hard neck collar to make sure nothing moves in my neck – these are a pain, but I’m not complaining. I’m so glad surgery was a success, I’d wear this until 2020 if I had to. But, only 2 more weeks and I can wean out of it. And drive – not be dependent on my husband. On the home stretch!
There are SO many things in life I want to do now that I have pain-free days! My quality of life and relationship with my husband improved dramatically. The other day, he said “It’s just so nice to not have to hear about your pain”….and it is. But a note on chronic pain – if you’ve not had it, it is all-encompassing. And the ‘chronic’ part just compounds it every day. It’s a horrible beast.
I’m on some support groups for spinal cord stimulators and feel so bad for the folks that got all this invasive crap done to them with no pain results. Had that been me, I’d be crying at home right now. But I’m so so lucky it worked!
I actually charge myself with an inductive charger every other night. I’m like a cell phone – or robot, which I prefer. The bionic woman. Robot Social Worker is my favorite so far.
Anyway, that is my story. If you have chronic pain and this is something that could help, go for it! Ask questions if needed, happy to help! For many it has been life-changing. I’m happy to be in that club.
More blogs of my new life adventures soon! 🙂