Sunday Stroke Survival: 11th Hour Switch Up

Okay, y'all know I'm a Murphey and not excluded from Murphy's Law, right? Thus is the case of my trial surgery. My surgery time was changed from 7:30 to 9. No biggy. More traffic but we didn't have to get up so early. The two days of rain prior to leaving for Atlanta did pose a problem for making it up the driveway in my van. It meant we'd have to take Mel's 4-wheel drive truck. Mel's fix for me was to build a step out of pallets to make it easier for me to get into the truck so long as we were together.

Now if you've ever been to Emory, you'll know you are dealing with four multi storied buildings with sky bridges connecting them to each other on the second level. Park in the wrong spot and you've got a hike and a half through a maze with various construction projects underway. Guess what we did? It was a fifteen minute hike to get to the right set of elevators. To top it off, it's springtime and so something was pollinating that my asthma didn't like. I awoke with a thin wheeze, by the time I reached the surgical waiting room I was gasping for breath. I had left my inhaler in the truck and a valet attendant parked it God only knew where.

I managed to check-in for my surgery 10 minutes late. So we are sitting there expecting my name to be called any minute. After thirty minutes had ticked by, my name was called. The fellow stopped and checked his computer screen. He turned, apologized, and he asked me to be seated again. The hours passed. I even took my second doses of Baclofen and Dantrolene for the day. Imagine the check-in folks were tired of us checking with when I would be called. Finally, I was next in line. TWO PM! We both could have slept in! I could even eaten something later instead of being NPO (nothing by mouth) since midnight!

I was put into the gown and the anesthesiologist came in to talk to me. I was being prepped for a Baclofen pump trial. This was news to me, so I corrected him. That started a whole new argument with two of my neurosurgeons, the Baclofen pump Dr, and me. Those prep rooms are not very big to begin with me rising to my 10' tall battle stance made it seem even smaller. I felt I was lied to and not been kept in the loop. Two things I despise. I was on the verge of walking out.

Finally, Dr. Au Young, my neurosurgeon for the day, stepped up. He put a calming hand on my shoulder. His eyes told me he understood my feelings. He said the one thing that explained it all. "Insurance requires this step first." This deflated my anger. I understood and agreed.They were placing a catheter in my spine up to the cervical spine. Of course then, respiratory therapy had to be called to control my tightening bronchial tubes before anesthesia.

I woke up in recovery. Everything went fine. Then, they dropped the other shoe. I would have to spend the night. It was too late to do the 8-hr test. GRRR! I told Mel to go home. We had critters to tend to. This had taken far too long already. It was now after 4 PM. We figured Kassity, the new puppy, had destroyed the house at the very least. I hadn't brought anything with me.

It was almost 9PM before they had a bed for me up on the neurology floor. It was 3 hours past time for my next dose of Baclofen and Dantrolene, but coupled with the additional stress my arm and leg were in full spastic mode. My pain levels were hitting 10 out of 10. All my meds had to be ordered. It took an hour to get 1 Baclofen. I was curled up in fetal position whimpering. On her next neuro check pass, I told my nurse that I want the next two things before the next 30-minute neuro check...my Dantrolene, and something to eat with a Diet Coke full caffeine in that order. One look into my pain glazed eyes told her not to argue. My pain was reduce to a high 8 or low 9 by the Baclofen. I didn't care what hoops she had to make it happen.

If I had known I was spending the night, I would have brought my med box with me. I know how the hospital system works. I eventually had to call for a bed pan. With my AFO stuck in a bag on the couch and the rails up on my bed, what other choice did I have besides none. The nurse tech came in and lowered the head of the bed so I was flat on my back. It's probably the first time since leaving surgery. As I laid back preparing to roll on my side for bedpan placement, it hit me. The dreaded spinal headache. It crept up my neck, around the top of my head to end just over my eyes. There it sat threatening to take my head off. Migraines had nothing on this headache. As I filled the bedpan, I was fighting to hold down the Dantrolene and turkey sandwich the nurse had brought me.

The job at hand complete, the tech took my vitals. I told her to send in the nurse and raise the head of the bed back up. I told the nurse my problem. She asked what I took at home. I told her nothing unless it was really severe. She asked if my headache. I answered yes. She would have to call the doctor and get it from the pharmacy. I settled and asked for a cold pack at my neck. At 3AM, it wasn't worth the hassles. I just wanted this whole fiasco over with. The headache eased off a bit to where it wasn't threatening to blow the top of my head off with the head elevation. This is just the opposite of most people. What can I say, but I'm the Queen of Abby Normal.

About 8ish, the Baclofen pump doctor came in. He apologized for not starting the trial yet. He was waiting on the micrograms of Baclofen he needed for the trial from Emory's pharmacy. This was the same Baclofen pump doctor who said it wouldn't work on me months ago. A real confidence builder, huh? He said if he had known Emory would have so much trouble, he would have brought some from his office across town. Hindsight is 20/20. For me, it was Murphy's Law, but he'd be better prepared next time.

But once again they were withholding my Baclofen and my pain levels were escalating.

By 10, someone had scurried over from his office with the vials. So the trail began.  It would take four hours to reach maximum effect. All during those hours, I wanted it to work. I actually wanted something or anything to work. Surprise, surprise, the pharmacy actually got all my meds. No blood pressure meds or heart meds because my vitals were low and my EKGs  didn't warrant them except when I was in extreme pain. I ran a couple hours of nasty looking strips which is normal for me. After that, my vitals continued to be low until I was able to walk around.

So I waited and tested the flexibility of my arm. I kept hoping to have my arm to flop down besides  me. For me, that would be a successful trial. It didn't happen. Instead at the four hour mark, my wrist moved! It went from a locked 90 degree inversion. To easily into neutral. As far as my bicep and pectoral muscles go, there was enough relaxation for the unparalyzed shoulder to do a partial range of motion. I think to Baclofen pump doctor was as shocked as I was.

When Dr, AuYoung, neurosurgeon, returned to pull the spinal catheter at the end of the trial, he was all smiles. He said the the trial was a resounding success. I told him about my disappointment about not being able to straighten the arm. He retorted that he wanted a rocket ship. Again the hand on my shoulder, he told me with time and hard work it will happen. Baby steps. This was a start. You gotta love this neurosurgeon's bedside manners.

On the down side, there was a slight visual distortion  with the high doses of baclofen being so close to the brain, but no cognitive defects. I'm still playing Russian Roulette being off my blood thinners. I'm still trying to get my energy back. I can't believe how draining this ordeal has been. I'm praying my muscle memory has survived these years of fighting spasticity. Both my thighs feels they are on the verge of cramping and my right hip is still quite painful. They are slow to move also. I'm wondering if it's where they went into the upper lumbar spine.  with the catheter. It's just been traumatized. The baclofen doctor confirmed this later during many of my followup calls. I'll asked Dr. AuYoung to enter the thoracic region next time. The spinal headaches continue. Although they aren't constant now. I think a blood patch will fix this next go around. It doesn't hurt to discuss it.

After almost a week post procedure, these symptoms should have abated by now. The baclofen doctor dispelled this notion. It could last several weeks, but should disappear totally within a month as he swelling and cerebral spinal fluid adjust to normal.

My follow up appointment is the 22nd for a final go ahead on the Baclofen pump, and then intensive PT once again. We've come a full circle in the past two years. I'm ready to move forward and beyond in this post stroke saga.

Nothing is impossible.

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.

The SCS Trial Surgey is Set

 🍀HAPPY ST. PATRICK'S DAY🍀

TO Y'ALL!

 

Well after playing phone tag (for over a week) with Emory neurosurgery in Atlanta, I've finally got some dates to share with y'all. My pre-op visit (the final one) before the Spinal Cord Stimulation trial is April 1st.

When the team nurse called and I actually got to talk to a real person, I asked her if it was an April Fool's joke because of the date. I told her that I'd been dealing with Emory for almost 18 months trying to get relief for my post stroke spasticity.

She laughed with me and told me that was the appointment. The appointment time is manageable at 1:30. But the surgery time is 7:30 AM on the 8th. I'll have to leave the house at 5 AM. Normally, this isn't a problem for me because I'm usually up at 3. But, Mel is a night owl. She normally doesn't wake up until 10 or 11 and she'll have to drive me or at least drive me home afterwards. She's going hate driving my van, but there's no way I'm going to be able to manage getting in and out of her truck afterwards. She's going to hate it, but she'll do it.

Puppy Update
Kassity is doing well. She knows her name, come, sit, nap time, and look at me as well as the hand signals for these commands. She accepts the collar and leash. The puppy even heels to it now. She especially likes praise and the treats I made for her.

Kassity is still have bouts of hiccups. You know what they say about hiccups, don't you? Well in the three weeks we've watched her grow from fifteen pounds to twenty, and become as big as Herbie except not as rotund. She's a head shorter than Nnyus. The older dog is having trouble fitting the puppy's head in her mouth. This is Nnyus' reprimand.

She now patrols the property with Nnyus. Nnyus has introduced her to the neighbors, etc. She's learning the difference between good and bad predators although she loves to watch the chickens run away from her. When outside, she's always on a mission. Her nose is always going. She wants to play with the cats, but they are having none of it. They still haven't laid into the puppy with claws yet, but it's coming.

I know I'll be alright with the surgery. I just pray that it works.

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.

And the Waiting Begins Again

Well After a whirlwind trip to Atlanta in two days, I finally completed all the prerequisite steps for the SCS (spinal cord simulator). I had my MRI and psych evaluation.

Whether I passed the psych eval is a huge question mark. I know from research that I threw a couple red flags in it.The biggest being my history of alcohol and drug addiction. The fact that I've been clean for for 33 years and was a court appointed counselor should offset that some. My PTSD is another red flag as is my fibromyalgia, I can do nothing about that. I can only hope that my coping skills in place for decades will offset these. That will be left up to the neurosurgeon's discretion. He said it might, but then again it depends on the neurosurgeon, but he didn't have a problem.

The damage to my spine which will show up on MRI should not be an issue because the implant will be higher for my upper limb pain and spasticity. But, the degenerative arthritis in my cervical vertebrae might be. 

I just don't know and it will be ten days before I do. ARGH! I waiting again! But it's only ten days.

On a lighter note, we have a new addition to our household. A 9- week old pit bull mixed puppy. Her father was a German Shepherd /Labrador cross. We've named her Kassity. Her Gaelic name means she whose full of love. It suits her. We'd forgotten how labor intensive a young pup can be. Maybe, it's because we getting older. Nah! That can't be it.

Yesterday, Mel tired her out walking to the creek twice about 1/4 mile round trip. It exhausted Mel too because it's all downhill or uphill going. She's still trying to make friends (annoying) all the multi-legged critters on the homestead. Only Nnyus, our guard dog, accepts her for now, but she's only been here since Sunday. We've begun training her the moment she got out of the truck.

On a sadder note, Nnyus who we thought had a cold with coughing turns out to have heart worms. So much for the hundreds of dollars we've spent on the preventative medicine. The arthritis she's had in her hips is actually hip dysplasia. Nothing can be done for either condition so we'll eventually have to put her to sleep, but that's not today. Today, she's teaching the puppy chicken corralling. The chickens have no idea how to take this fifteen lb (yes, she's gonna get big!), yipping, bundle of energy.

She keeps on wanting the puppy to follow her around the five acres she considers her domain. Only two acres are ours, but she claims three acres of our neighbors' property as hers also. They don't have dogs to guard it nor fences to keep out predators. But the little legs on the puppy frustrates her. She'll just have to wait until the puppy grows up a bit.

If nothing else, our critters will make the waiting time goes faster.

Nothing is impossible.