Sunday Stroke Survival: Orthopedic Visit Part 2

 (Un) Happy 7th strokenniversary to me. It's been seven years since my first stroke (ischemic) and a couple days shy of my hemorrhagic stroke that side tracked my life forever or seems that way. But honestly, but what's seven years compared to a whole lifetime? Just a small amount of time. A 10th or less when we spend 1/3 of our life sleeping 23 years! (based on 70 year life span which I'm fast approaching)

After my last orthopedic visit, I had the required CT and MRI. I just had my next appointment with him.They were going to lengthen the bicep in my upper arm (to extend my elbow) and the brachioradialis at the elbow (to extend my wrist) tendons. His exams are painful as he continues to test my limits of spasticity. He said there were no guarantees about how much time before the spasticity returned. So now I'm just waiting on a date. Once again I have to get cardiology and anesthesiology clearance. Cardiology is done and awaiting my appointment with anesthesia.

The surgeon said this is what the study was about. I would need intensive physical therapy and bracing. Followup visits 8 weeks post surgery, at 6 months, a year, and every two years for up to 5-10 years so long as the spasticity doesn't override the surgery. He said it was my best option for a fighting chance against the spasticity which is all I really wanted when I started this journey. I'm approved candidate #2 of 25 for the study. Another 23 should be added in the coming weeks, but it won't delay my surgery.

The news was not all good.The bones where the wrist joins the arm and several of the smaller bones connected to it had deformed from being so spastic for so long. So the full recovery of the wrist with full range of motion to the wrist and several fingers is not possible. He did mention a future possibility of joint replacement with a successful trial. So, there is hope for correcting that too.

My PCP ( primary care physician) has been practicing medicine for decades. He's just in awe that they could replace a wrist now. When I went for my six month check up, I told him I had just my baclofen pump placed. He got a confused look on his face. "I thought you were denied."
"Things change," I answered and told him about my new neurosurgeon.

I went on to tell him about the study and he was all smiles. "It's your shirt isn't it!"
"Every single moment of every single day."
He clapped me on the shoulder and genuinely expressed his happiness for me, and then he encouraged me to keep fighting.

I'm approaching this with eyes wide open and seeing clearly. For all the optimistic hopes, this is a study not proven fact or treatment. What I've typed is the optimal outcome. It might fail. I realize this, but am a willing guinea pig because of the hope it offers to post stroke survivors.

He apologized for getting so delayed in getting this study approved to begin. I shook my head and explained that I knew the study approval process. My husband had been in an NIH( National Institute of Health) study for his cancer. My nephew in law also is running a NIH study on septicemia. The hoops he has to jump through are horrendous.My youngest daughter had been involved in two drug trials on hemochromatic tumors in her brain. The first study she is the only one still alive. The second one cured her until the next time. It's a question team members, timing, facilities, and funding. It can take decades to get it all these details together. Getting approved candidates is the easy part. Everything in God's time. He appreciated my comment.

So, another detour in my living post stroke working towards recovery. Let's see where it takes me.

Nothing is impossible.

It Seems Like Just Yesterday...

 It seems like yesterday I was telling you about my Baclofen pump trial. Wait a minute, it was just yesterday.What a difference 24 hours can make!

In a flurry of phone calls this morning, I am now set for the surgical implant of the baclofen pump THIS Friday!!  It's it fabulous the way God works? What I thought two weeks ago was an impossibility is now going to be a reality in a few days.

I have even better news, hold onto your hats, I'm going to be part of a spasticity study between neurology, orthopedics, and the rehab team for post stroke intervention.

Dr. Au Young, God bless him, was chatting with some colleagues from orthopedics over lunch. They were telling him about a new multidisciplinary study they were undertaking regarding post stroke spasticity. They wanted to know if he'd like to come on board. He jumped at it. He told them that not only was this a close to his heart interest that he also had the most excellent candidate for them. Of course, he was talking about me. He went on to discuss my case with them. They in turn got excited about me too.

I've been open to ANY possibility to help me recover from my strokes and the damage that they caused for almost seven years now. My first call this morning, 9AM, was from Melissa, Dr. AuYoung's assistant. She wanted to know if I wanted the pump. I told her yes. The next question was I available for surgery this week. I answered in the affirmative. She said she'd she'd pass the message along  to Dr. Au Young.

Within an hour he called me back. I could hear the excitement in his voice. He told me about the other orthopedists, the study, and what they wanted to achieve. He hoped I didn't mind him talking about my case to them. It was a clear HIPPA violation, but done for our mutual benefit. I forgave him. I told him discuss me away if it would help me regain a portion of my life. He asked me a few more questions and we hung up. Both of us thoroughly excited for the hope and the possibility.

He called back within an hour telling me that he had an opening this Friday as his first surgery. Yes, it will mean, for us, rising at 0 dark 30 to make the drive into Atlanta. Mel can just drop me off and drive home. She shouldn't run into any huge traffic snarls because the major flow should be going into Atlanta not out.

I'll be in the hospital for a few days at a minimum so I'll be spending Easter there. That's okay. Christ arose on the third day to bring hope to all mankind. I'll be spending Easter with a renewed hope of another kind. This one personally  for me. It seems kind of appropriate. The fact that it'll be done prior to my birthday, makes it even better. Now begins the rush to prepare for surgery.

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.

Sunday Stroke Survival: Yet Another Trip to Emory!

My appointment with Dr. Boules' partner happened on the 4th, Instead of writing another scathing post of the long, drive, the fighting Atlanta traffic there and back, and the rests, I decided to wait a few days to post.Y'all by now now it's winter and the trip to Atlanta hasn't gotten any easier.

I decided last year that this was going to be it, as far as these trips if I wasn't satisfied with the results. I wasn't going to waste another year in pain without something positive happening. I'd go back to Botox injections, if I had to.

Well as usual, I arrived 30 minutes early for my appointment. You can never tell whether you'll run into an accident or something else delaying you like trying to find a parking spot and having it be a 1/4 mile walk to the office. Even though my gps thingy says travel time from my front door to theirs is 65 minutes, I always allow myself two hours. My jogging days are ancient history. I could say I gave it up for Lent, but it's been almost seven years. (Grinning) Anyhow, I checked in and took a seat. I plugged my ear bug in and queued up up the latest Audible book I purchased.

At the allotted time,  my  name was called. The nurse couldn't get the automatic blood pressure machine to work. I told her that those machines didn't like my low blood pressure. After three attempts, she finally took my word for it. Oh darn, she'd have to do it the old fashioned way with an actual stethoscope. (snort) I was nursing long before those new fangled machines were created. I believe today's nurses depend on machines too much. Anyhow  she got my blood pressure after two attempts. 90/59 with a pulse rate of 72. All my meds were keeping them right where the cardiologist wants them with minimal stress upon my damaged heart and valves.

In saunters Dr. Boules' associate. He mentions the two options he was considering a baclofen pump or a SCS (Spinal Cord Simulator). He started explaining the basics when I stopped him. I in turn began telling him about the four years of research that brought me to Emory and why. He quickly realized that I wasn't an uneducated person. We started to discuss the matter in best outcomes and most benefits for my specific case. I simply cut out the preliminary BS.

We both agreed that the SCS was the best option while awaiting the more permanent rhizotomy. There were two hurdles to jump through, a MRI with contrast of my spine, and a pysch exam required of all pain management patients. The MRI is scheduled for the 26th at 8 PM. While I don't relish the idea of driving to, around, and from Atlanta after dark, I'll do it. The pysch consult, they'll call me back with the date.

Am I worried about either one? Nah. I love playing with the minds of professionals. (wicked, evil grin) As far as the MRI goes, it's like an old, comfortable pair of shoes. I've had so many since this scanning technique was born in the 80s, I can't even remember how many. I usually nap through them. Again there is hope for pain relief and function.

Nothing is impossible.