(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.
You continue to be a living miracle and inspiration. Hope that surgery gets rid of the spasticity.
ReplyDeleteNot totally yet. It will require higher doses on the pump but I'm still hopeful.
DeleteThis sounds like good news. I lost some range of motion (ROM) after I broke my hemiplegic forearm, but what I have left is functional. I do ROM exercises every day so I can keep what I still have.
ReplyDeleteI wish spasticity was predictable. I do what I can.
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