Sunday Stroke Survival: Getting Ready to Go Under the Knife

No, Not really. No scalpels involved this time. It's more like an epidural you get during childbirth. The only problem with this is that all five of my children were born via natural childbirth and no drugs. I have no idea what an epidural feels like although I've assisted in a few.

On the other hand, I've had slews of steroid injections and four back surgeries. It can't any worse than those. But still, I can't help being a little nervous even after discussions at length with the neurosurgeon last week. Even though this procedure has been done since the 1960s and my surgeon has done thousands of them, there's always the oops factor.

The fact that this trial is done with a local anesthetic is comforting to me. I'll be awake to hear what's going on. For some people, they take the attitude of wake me when it's over. That's not me. I've wanted to be awake for all my surgeries even though the surgeons wouldn't let me. Darn! I've just have this thirst and curiosity for medical knowledge. I have this uncanny ability to recall what was said and sounds while under anesthesia usually within two weeks post op. I've shocked more surgeons at my post op visits by telling them their music choice and snippets of conversions during my surgery. This time I'll be awake for the full hour. I'll even be talking to him and the tech. I like that.


From what I've read, the worst part of the whole trial is the tape (and removal) and not being able to shower. Honestly, I can handle the no shower. I regularly do birdie baths, pit stops, or sponge baths during the week and fully shower for my Saturday night (afternoon) bath. It just takes too much energy and time to shower more often unless I get truly filthy. With the advent of spring, that time is upon us again on the homestead.

I expect to be a little sore the morning after. I usually am after the shots in my back but nothing I can't live with. It's minor if it relieves the constant pain and spasticity I'm dealing with now. I'll spend the week playing with the programs for pain relief and stimulation settings. Then about a week later, I'll give my results to the doctor. Whether a permanent, implantable device decision is up in the air until then.

I'm ready to take my life back!

Nothing is impossible.

Sunday Stroke Survival: Test Results Are In for the SCS Trial

The test results are in. I actually passed my psych evaluation as normal or within the normal range. This is a shocker to me. Me, who I've dubbed the "Queen of Abby Normal," passed with flying colors!

All joking aside, I knew I was pretty well adjusted mentally. I have a positive outlook on my life in general, but not a rose colored glasses view. I tend to be firmly grounded no matter what comes down the pike. Most of this faith based, but whatever works. Although like most folks, the initial shock value does rattle me a bit. I do rationalize with research and facts over time. It's a logic component of my brain that still works overtime.

The MRI was acceptable for placement. My blood thinner stoppage letter is still good although my stroke risk jumps to 75% chance of having another stroke while off my blood thinners compounded daily.

As much as my stability centers on faith, I've learned over the decades to research worldly experiences to converse intelligently with care providers. Most of whom are not believers, but base their beliefs on facts and figures. Not everyone lives a purposeful, faith driven life like I do and I understand this. When researching a subject, in this case SCS, I balance both good and bad results to get the bigger picture of what I find. This is logical, right? I don't focus on the glass half full or empty reviews or experiences. In this case, I'm also research the various different devices (companies) and their research and results too.

Yes, it's a lot of research, but I want the biggest bang for my bucks. I want positive results or as positive results as humanly possible. Even if I'm not "paying" for it. Y'all long time readers know my views on this. Would you be any different?

This surgery will be covered by my Medicare and my supplement. Believe me, I checked and also researched the prerequisites. On a fixed income that's stretched to squeezing pennies into dimes, this is an important consideration. Of course, I'm talking about ROI (Return On Investment). Pain relief, return to premoderate spasticity and duration versus other medium functioning alternatives.

Example:

Botox injections, for me, every 90 days at $7K an appointment with only 45 days out of 90 pain control, and 14 days of functionality. Plus, PT with dry needling every week to twice a week for mobility (contracture prevention and pain management at $45 a session). Times this by the five and half years, I've done it.

RX bill is $240 a month without Botox with poor pain relief, zombified lifestyle, falling asleep when still for 15 minutes without heightened stimuli, and no functionality improvement. Plus, PT with dry needling every week to twice a week for mobility (contracture prevention and pain management at $45 a session). I've been doing this without Botox for 18 months now.

Versus 

A one time charge of $35K with battery replacement every 5 years, a 50%-75% pain relief, improve muscle strengthening, a minimum 50% functionality restored, possible reduction of muscle relaxers and no additional pain medicine.

For me, a 5 out of 10 isn't worth mentioning. It constitutes a good day with low pain. I can pretty well function normally I've been living with it for so long. So a 50% pain relief would be fabulous. At 75%, pain? What pain? If I complain of pain at a level 2 or 3, it would be heavenly.

To have 50% of functionality restored nonstop is way better than to backsliding into nonfunctioning that I've been doing with my worsening spasticity. With the combination of strengthening stroke paralyzed or weakened muscle, is gravy to top of recovery. There are very few case studies on this because this application is still in the result gathering stage. This is in its infancy.

So all I'm waiting for is the neurosurgeon's stamp of approval. I should hear something next week or my fingers will do some walking. All the pre-surgical hoops are jumped through on my end.

Nothing is impossible.

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.

Sunday Stroke Survival: Snatching Victory from Defeat

When it comes to failures living post stroke, there are many. I fail to accomplish tasks all the time even after six years of living post stroke. There's not a day that goes by when I don't fail at doing  something I try to do. In part because I challenge myself each day to regain some ability or other. Zig Ziglar said...

"If you learn from defeat, you haven't really lost."

 I was first exposed to Zig in my marketing classes at college. He specializes in the area of personal development training. He also said...

You don't have to be great at something to start, but you have to start to be great at something.

Even before I was a stroke survivor, old Zig confirmed what I'd always believed.  I often refer to this here as snatching victory from defeat, and how do you know you can't do something unless you try. You are never truly defeated unless you give up.

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Yes, it's very frustrating challenging yourself with a new or different challenge each day.  I usually start my day, after prayers, with something I relearned to do well. It bolsters my ego for the trial to come. Plus it reinforces the relearned skill. Whether it's beating the computer at a game of Canasta or baking bread. It's a tactile operation that puts my mind and body unto motion for the day's new challenge. 

For several months now, it's dealing  with painful spasticity and walking. Now,  I'm more apt to fall which I'm back to doing at least once a day. All it takes is an invisible piece of lint on the floor and I go boom. It feels like the early days of walking after my stroke. The 30 degree inversion of my affected foot in spite of my AFO might have something to do with this also. But I don't quit. I pick myself up and keep going. 

There's no denying that I'm finding it more difficult to get up these days too. So much so that I asked my neurologist for an MRI to see if I'd had another stroke. But, I've been there and done that already. And yes, I did.  It's just means working hard again to regain what I recovered back. My 3 cm ischemic/hemorrhagic stroke damage area has grown to 6 cm. Another set back...what's new. We figured that was partially to blame for me being on the pity pot so long too. It skewed my attitude, but it's getting back to more my normal every day. My right side is weaker again except for the spasticity. The spasticity only increased with the new brain insult.
Just my luck.

I did get my dry needling and stretching this week. The pain is more tolerable now. She actually had to needle  the base of my skull, neck, and trapezius muscles  because they were so strained from compensating for the spasticity in my arm. Just try carrying a 7 lb weight around 24/7 and see if it doesn't affect all your other muscles also.


Oh, my neurologist calling Emory worked! My appointment with the neurosurgeon is September 13th. I'm doing the Snoopy dance of happiness since they called.

The waiting is over almost. Granted, this is only the first meet and greet with the physiatrist who will do the trial for the Baclofen pump, but it's a start of the action plan the functional neurosurgeon laid out in my initial visit with him back in May. If the trial is successful the pump placement can be scheduled within a month. It's been a long time coming.

Nothing is impossible.

Neurosurgeon Update

At long last,  I had my consult with the functional neurosurgeon. I've only been trying to get in to see him for 8 months! If you remember I had to go through Emory's Stroke team first.

I spoke at length to his assistant. He in turn spoke to Dr Boulis before he came in to see me. Dr Boulis and I reached common ground very quickly. I could see the gears turning in his mind for the best possible outcome. His assistant had already performed the spasticity assessment and preliminary exam. To nobody's surprise, I was ranked severe. I've been this way for months. I'm now 10 months since my last Botox injections.

I simply said, "I'm broke. Fix me." In my mind, I was doing my Austin Powers imitation. "I want it all. Yeah, Baby!" I wasn't afraid of the pain of recovering from surgery, nor hard work entailed to get what I wanted. I never have been.

He nodded his head and asked me which was more important pain relief or recovery. I answered back
with both. The only way to fight spasticity is to strengthen the weak muscles and I wanted a fighting chance. He said he was impressed by this answer. It proved to him that I had given this a lot of thought. I explained to him that I'd read almost every report on spasticity in the past three years including some of his. I even mentioned his TEDMED talk in Washington, DC. It was about the battle that goes on between the neurosurgeon, the patient, biotech, and the FDA. Pretty interesting stuff, but I digress.

The thing about the rhizotomy is the prolonged recovery time, at least a year between the surgery and  reteaching the body. So if he did a dorsal rhizotomy to my lumbar spine, it would be a year or two before he could do the cervical/thoracic one and vice versa. Especially since I'd already spent six years in this fight. I had confessed to him that I was tiring of the fight for recovery post stroke. I'm still in physical therapy and looking for answers after six years post stroke, for God's sake!

He first did the "do no harm" speech and explained he didn't want to make it worse. I lifted my affected arm the 4" away from my body for emphasis. That's how much voluntary movement I have in my affected arm with the spasticity. "Worse than this?"

He had to admit that it couldn't get much worse. That left the leg. While I've lost the ability to dorsey flex and evert my foot at will because of the spasticity, it still keeps me ambulatory. Sure, I'll stumble over invisible lint, or fall, but I'm still moving under my own power. The new new AFO is correcting my odd gait issues. I again imagine I'm seeing the gears move in his brain and the light bulb goes off. A Baclofen pump for the lower limb would work better than the oral medicine. Both surgeries could be completed within a year.

Then I dropped the bombshell. First one, and then the other. I told him about my aneurysms and about how my heart reacts to anesthesia. I half expected him to run out of the room screaming, but he didn't. Now, it was my turn to be impressed. No sense in doing the rhizotomy before the aneurysm is fixed. If it blew, I'd be dead. That would have to wait until after cardiology gave the all clear for me to be off my blood thinner for three weeks. But the Baclofen pump trial could be done to see if it works on my ankle and foot spasticity. I would only have to be off my blood thinner for a week prior to that surgery. I would also have to be cleared by the Emory heart team prior to the rhizotomy. It's just Emory covering their butts, but I understand it. They don't know my cardiologist or my vascular surgeon.

Tomorrow, I'm calling my cardiologist first thing. It's time to get this ball rolling. My hope is renewed and very much alive after this appointment. At the very least, it's a positive action plan.

Nothing is impossible.