Sunday Stroke Survival- Neurosurgeon Update

Well, I had my appointment with the neurosurgeon this week, but the news wasn't what I expected. The surgery for the cervical rhizotomy has been tabled for a year. His schedule is already booked for 2019! Talk about frustration and being irritated.

Why have me jump through the hoops for months when surgery was not a possibility for a year? I'll just have to redo the same tests all over again before surgery can be scheduled again in a year.

To make it worse my PBA kicked in. Instead of losing my temper and yelling, I bawled like a blubbering idiot. I have done everything they've asked, waited fairly patiently for appointments, and I was cast aside like a worn doll or at least that's how it feels.

This specialist did say he had a new partner. Great! A small glimmer of hope. He would discuss my case with him. It might be possible to have a Baclofen pump installed until the rhizotomy can be performed. Huh?! Isn't this why I jumped through hoops months ago and was deemed unqualified for? I was told not necessarily. I had been deemed unqualified for the dorsal/lower back Baclofen pump to reduce the spasticity in my leg. This was different it packs a greater punch to the brain and arm. But it will be up to his partner. Of course, being now after 5PM, they will have to call me back with an appointment. GRRR! They called while I was typing this. I have an appointment on February 4th.

Am I crazy to want to be out of pain? Am I crazy to want to stop my post stroke spasticity? Would I be certifiably insane to continue chasing this rhizotomy? I'm beginning to think I am. I've spent dozens of hours driving back and forth the Emory. Added wear and tear on my van, and burned 5 tanks of gasoline. Spent money I really didn't have for parking fees and meals on the road. And, it's been over twelve months with NOTHING to show for it. I'm in the worst, constant pain than I have been in years with no end in sight. I'm continuing to lose function. I'm no where closer to the end than when I first started this journey eighteen months ago.

The fact is, I'm frustrated and tired. I really don't know which is worse at this point whether never hearing back from Shepherd's Center or the run around I've gotten from Emory. I'm seriously thinking of getting Botox again. Even 45 days of being pain free out of 90 is better than the never ending routine I'm going through now. I might even be able to reduce my Baclofen/Dantrolene/Valium dose. Lord knows, I'm at best a zombie now on these maximum doses and still in pain 7 out of 10 on good days. I'm learning to live and function at this level through squinting eyes and grimaces.

I can actually function quite well with my arm bent at a 90 degree angle if it wasn't for the pain. I can hook two gallons on milk (about 18 lbs) or 6 splits of wood in a tote with the arm. My arm doesn't budge. With 8 splits of wood (about 35 lbs), the arm may lower a couple of inches. I'll have to use my functioning arm to help support it so the tote handles don't slide off. That's not too shoddy. My back is another story with the stooped lifting with too many repetitions. I just have to watch for skin break down at the hand, wrist, and elbow. The tote was a new purchase this year. It is better than hauling in firewood one or two pieces at a time. Why I didn't think of this two winters ago, I'll never know. But from one moment to the next, my arm will go from 90 degrees to in my chest in a hard spasm. Any movement when my arm is in hard spasm shoots the pain level to 10. I can't scream. I can only shed tears.

If I don't hear something positive from Emory, I'm calling my regular neurologist to put me back on the schedule for Botox. I'm tired of jumping through hoops and getting no relief. This isn't living... it's hell and I've been patient.

In the meantime, I've made two different fudges. One chocolate made with semi sweet, bittersweet,and milk chocolate (think death by chocolate) and a peanut butter one with crunchy peanut butter. Sometimes you feel like a nut and sometimes you don't. I've also got my gumdrop cakes in the oven for eating and giving. Later, it will be cookies. I made cinnamon gingerbread men ornaments for the Christmas tree. They smell yummy but they're not to eat. They taste yucky. Pop over to the Cockeyed Homestead blog to find out how I made these. Nothing perks me up after a totally bad day (months) like preparing something yummy in the kitchen.

Nothing is impossible.