Sunday Stroke Survival: Trouble with Tribbles Continued

Du,ring my down (nonwriting) time and before my unexpectedly long hospitalization, I had some life decisions to make. The accident shook me up and hurt me worse than I wrote about here. I had a concussion, an avulsed left eye, banged up both sides of my body, my implant slipped from its pocket, and was really doubting my ability to continue to live independently.

It was this last doubt that made me stop writing the posts. I needed to do some serious soul searching. I started doubting and second guessing every decision I'd made since my stroke in 2012 and the death of my husband in 2015. Yes, I was that badly shaken up. Who was I now? What was I honestly capable of now? How much of what I believed I could do was hype and how much was reality? I was reevaluating goals and trying to find some order that was realistic. This was a mighty tall order and I was taking an honest hard look at my life and the rest of my life. With all that's come down the pipe is it any wonder I wanted it to be 2012 again, but it never would be again?

I wasn't without options. I could give up this lifestyle choice and move into a senior's living place or assisted living place back home. I have so few possessions that it would be feasible. I'd even have to buy a few things like dinnerware, a dining table and a bed. My needs are really simple at this point. It would just mean moving back home near family, friends, and my church. But it would mean giving up some of my independence. I decided to stay put for the time being. The other options were still open.

After my ordeal, the simple acts of feeding myself, going to the bathroom, and getting dressed are about all I can manage these days. Once again, I'm considering my other options, but my stubbornness continues to make me stay put for as long as I can. Although distant, my stamina will increase again. Oh what a joy to get older. Everything takes longer. A long list of honey-dos awaits and growing while I do this. They'll get done eventually.

Nothing is impossible.

Sunday Stroke Survival: Trouble with Tribbles

Original Star Trek series circa 1967

I got tired of using the Murphy's Law line. So instead, I chose the title of one of my favorite Star Trek episodes. The gist is the same. One little thing snowballs into some major things including death or at at least circumnavigating death once again for me.

Even the old Neitzche's line of that which doesn't kill us makes us stronger is old and trite to me after my past couple weeks. The fact is, I'm tired. Not that I have a death wish, but more exactly exhausted of living. I'll explain.

It all started innocently enough. I had an ultrasound of my "thyroid" scheduled for the week of  the 23rd. An incidental finding of the CT of my neck after my car accident at the end of May showed an enlarged thyroid gland. The only problem with this was my thyroid and parathyroid glands were removed in 1993 due to cancer. To say I was concerned by the new finding was disturbing was an understatement.  But yet, I had beaten this cancer before and knew I could again even though my mother hadn't. A plan was in place to ultrasound the area and consult a surgeon to remove the growth. My GP's feeling if it wasn't in there naturally, it should be removed with my history. I wholeheartedly agreed.

I had an appointment with my cardiologist because my unusual Electrocardiogram reading and changes in my EKG. It seems the I have low blood pressures throughout my body but have high blood pressure within my heart damaging my already damaged heart valves. My three of four valves are fast approaching replacement which I have refused and we were searching for additional options.

Both of these fall within living my life to the fullest without major interventions. So I faced them with no major upset and rolling with the punches. That's why this is my saga versus a blog. Stuff happens and keeps happening in my life that would overwhelm most people. I've learned over the decades to not sweat the small stuff and almost everything is small stuff. Living post stroke, living with a bad heart, or living with/post cancer is even small stuff in the whole picture of living. They are bumps or detours in the roadway of life. You get through them and go on living the best you can. That's all anybody can do, right?

So what tilted my apple cart? Yes, everyone has a limit, even me. I awoke on Friday the 20th and noticed my nightshirt was wet over my pump. I thought maybe my nightshirt had bunched up at my waist and sweat had accumulated there. I changed into t-shirt and shorts, and thought nothing more about it. I fed the dogs and me, and went about my normal daily activities. After about an hour, my affected arm brushed against my shirt. I noticed a 8" fluid stain on my t-shirt. Oh, great, I thought, I'm leaking baclofen from my pump. I could overdose if it were not correct. This made it an emergency situation. I put in a call to my baclofen doctor at Emory.

The rapid return call was not what I expected. There was no way I was leaking baclofen. There was a strong possibility I was leaking spinal fluid! This was an emergency. Arrangements were made for my direct admit to Emory. Even though I was on blood thinners, they'd have to go in and remove the catheter pulled from my spine immediately.

Upon my arrival, 2 1/2 hrs later with Atlanta traffic, I was whisked upstairs. Dr Au Yong was in surgery so in rushed two of his neurosurgeon residents. Upon excreting some of the liquid, taking swabs for the lab, I was put in a gown and put into bed. The good news was that it wasn't spinal fluid. It was pus from a massive infection. I had an abdomen full surrounding my pump. The emergency was only now mildly abated. The infection could spread to the  spinal fluid. I'd need a lumbar puncture to be sure it hadn't. One was performed and it was clear of infection. We had side stepped a bullet.

Saturday morning, my neurosurgeon came in. We discussed my options. The pump and catheter needed to be removed as the cause of my infection. Mind you, I had no symptoms of an infection...no pain nor fever, but a highly elevated white count was the only indicator. We had time to let my blood thinner work it's way out of my body while hitting this infection with heavy duty IV antibiotics for the best results. I would remain in hospital until after the procedure. The fact that I'd miss my ultrasound and cardiac appointments were a foregone conclusion. I'd planned too be bored out of my gourd for the 3-6 days for the blood thinners not to pose a danger to surgery.

It didn't turn out that way. I had a grand mal seizure. A subsequent CT showed a slow bleeding hematoma in my brain. I remember being asked repeatedly if I'd fallen on or hit my head over the past several weeks, but the only main possible event was my car accident at the end of May. Nothing else that could have caused my major concussion. A bur hole was ordered to drill out to evacuate the clot and reduce my brain swelling, but I suddenly altered consciousness before it could be performed. I had to be resuscitated because my heart stopped.

The pocket of infection ruptured. I have a hard time distinguishing fact from hallucination for the next week in the ICU. The year, my birthday and name orientation questions was hit and miss. At some point, they removed my pump and spinal catheter. This included an intensive abdominal flush of all the purulent matter in my body. I know because they told me. I was one sick puppy.

I had told my neurosurgeon about the possible return of the thyroid cancer so an ultrasound was performed. it showed cancer It fills the space where a normal or slightly enlarged thyroid would be. Nothing can be done until I finish an additional two weeks of IV and oral antibiotics is finished. I was discharged home on Thursday. Mel dutifully drove to Atlanta, picked me up, and drove me home in rush hour traffic.

Without the baclofen pump, the arm spasticity has returned. My arm is now once again curled into my chest and cramping painfully. I am on antiseizure meds until the hematoma finishes absorbing (another 3 weeks). They are making me extremely drowsy. My get up and go has got up and went. I can't seem to get my stamina back. Just the effort of walking to the bathroom and sitting at the computer is tiring after two weeks in the hospital. I've taken daily naps. I was told that they could replace the pump after I finish the antibiotics, but I'm hesitant. Dr Au Yong had sneaked into the neuro unit before my discharge. He's on paternity leave. He told me if I needed him in the next six weeks, he'd be there.

So all my apples spilled out of my cart. To date, I haven't had the energy to pick them up. So my my Murphy's Law, Neitzche lines have worn thin as I try to recuperate. I still have my throat surgery and radiation to look forward to...fun, fun. So now, it's trouble with tribbles as I continue to breathe another day above ground.

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.

Sunday Stroke Survival: Baclofen Pump Update and More

Well, it's been three weeks since the baclofen pump was placed, but only two weeks since the pump was filled with the baclofen. The results on a whole was results thus far has been lackluster except for pain relief. I'm still on my oral baclofen while the 25CC of the saline works it's way out of my spinal fluid. I was forewarned about this. But I'm still chomping at the bit wanting to get on with it.

I have noticed that the rigidity in my elbow is less. I keep having to work at holding my bunny greens basket from sliding off my arm. This was the same arm that could carry 5-7 splits of firewood a couple of months ago without budging. So that's progress.

Another issue I had was with the elasticized binder placed around my midsection after surgery from bra line to mid hips. While it's not uncomfortable it does shift and bunch up as I move around. The added support is quite comforting while I'm moving if it didn't shift so much. The neurosurgeon's assistant did say I could take it off when sedentary. There is a major malfunction with this. While affixing the velcro with two hands is easy. But I only have ONE functioning hand. So I lay on my back tugging at the edges until it's halfway unbunched but I can't fasten it. Of course, I could always ask Mel to help, but the timing is always off when it's at it's worse.

Yes, I'm just in a griping mood, can't you tell?

I was told I could drive again. Considering I drove myself to three Atlanta doctor appointments not withstanding. (Grin) I wasn't on narcotics. I'd only taken 3 of the prescription of 12 morphine tablets, and had reduced my Valium intake from 4 to 1 a day, I thought I was safe enough to drive. Coughing, sneezing, and a good old belly laugh are PAINFUL. Off times they are without warning so I can't brace for it. Other than extreme fatigue from big city driving. No other ill effects. I got home and took a nap, but I did. The neurologist's assistant  gave me permission to drive. Doh! When I explained that it was planting season and we had 1/4 acre to plant, she grudgingly gave me permission to bend and lift ten pounds within reason. If I experienced pain, I was to stop and rest. You gotta love doctors that work with you.

I have to admit that I over did last Saturday and paid for it with extra pain. I did take an extra valium at bedtime to compensate for it. Ever since my drug addiction problem 30+ years ago, I'm strongly against any habit forming drugs. I have to be really bad pain before I take any form of these drugs. Drug withdrawal aside, it's just an aversion to all things habit forming.

 An exciting bit of news, I saw Dr Daly, the orthopedist. His plans for releasing the contractures to allow movement to the wrist and fingers is awesome! Of course, I'll need a higher dose of baclofen via the pump first. He was surprised at the lack of contractures in the elbow. He had high praise for my PT and their dry needling therapies. His hopes for recovery of strokes and spasticity was contagious.

After almost two years of going through the motions, I've finally hit the right combination of doctors. While I absolutely loved my previous rehab team, I'm hoping this new team will be just as fabulous.

Hope and possibilities abound once again. Stealing back increments of success from spasticity is worth it.  Recovery is worth it. Being on the forefront of new and innovated treatments for survivors living post can, with positive results, give another option to survivors world wide.

Nothing is impossible.

Sunday Stroke Survival: Surgery Recovery and Beyond

The baclofen pump surgery was no picnic. It will take time to fully recover and I know this. The fact that I'm living post stroke, have a bad heart, and numerous health issues further complicates healing. I'm not to bend, twist, nor lift greater than 5 lbs for at least five more weeks. I finally got the baclofen pump filled and it's working.

While abdominal implanted device is healing, the post abdominal surgical pain continues to nag me. But the good news is the spasticity pain is a very manageable 2 or 3 out of 10. Mobility of previously locked tight spasticity is lessened allowing for more easier movement. I'm hopeful that with future tweaks with the dosage that this will get better with time and therapy.

I just completed my biannual health check ups with both my PC and my cardiologists. While my PC wants to try new allergy drugs on me to see if we can get more relief for me, he doesn't want to throw a monkey wrench in the whole baclofen study. My cardiologist, on the other hand after reviewing my hospitalization reports, has changed my blood pressure and v-fib meds to PRN (as needed). This is a honeymoon period my body gives me to adjust. After my first stroke, this honeymoon lasted six months. I'm happy to report that I'm back on blood thinners again. No more playing Russian roulette with another stroke.

I have my first appointment with Emory's orthopedics on the 2nd. So the trial study begins. I really hope this orthopedist is better than the jerk I dealt with last time. Sure, this time I'm a five month nonsmoker. It's also a case of them wanting me instead of me wanting them.  It gives me a certain amount of leverage. With specialists this is always the best position to be in. At least in my point of view.

So the excitement of the possibilities are still rising. I have a future to look forward to. May my improvement strides make it easier for other stroke survivors' lot easier.  At the very least, give them options and hope. I'll gladly be the guinea pig. It can't hurt me either.

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.

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- 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: It's a Go-No Go

Frustration has set in this week for me. I met with the neurologist about possibly getting a Baclofen pump to ease my spasticity instead of Botox. He told me very bluntly, that to get enough Baclofen into my spine to make the arm work again I'd never walk again. What a trade off! I had to question (about 2 seconds worth) if it was worth it. My mobility is just as important to me as getting arm function back. Granted the Baclofen pump would improve the spasticity in my lower leg and I might eventually be able to get out of my AFO and improve my mobility. It would also stop three of the medicines I take now for the spasticity, dry needling, and the Botox in the leg. It might even reduce the constant, painful cramping in my arm.

This week, I hooked grocery bags filled with a gallon of milk and about ten pounds of other groceries on my affected arm and it didn't budge! That's how bad my arm has gotten. The only time it straightens to full extension is in therapy with dry needling with electricity exhausting the muscle and the PT using a good bit of his strength. That's once a week and it only lasts for 30 minutes.

Just how bad do I want my arm function back? It wasn't the fix I hoped it would be. We discussed other options... rhizotomy or peripheral neurectomy, and central ablative procedures, such as cordectomy, myelotomy, or stereotactic procedures. The one that seemed to offer the best hope was selective rhizotomy. All surgeries carry risks especially for me with my heart condition. The other consideration is that they are all considered a permanent means of getting the results I want. There is no going back and reversing what has been done.

Not that I don't trust my neurology team, I do. But I asked for a referral to Shepherds Center. They ARE the best in Georgia for spines. They rebuilt part of my spine for me a quarter of a century ago. I'm weighing my options carefully. If anyone can tell me the ins and outs of any procedure and the best outcome, it's them. I'm still waiting on the appointment with Dr Taubin, their spasticity specialist. I should hear some time this week. In the meantime, I'm doing research. With the last increase of Botox not changing anything, I'm looking for alternatives.

Nothing is impossible.

Sunday Stroke Survival: Time for a Change

I wanted to ask y'all some advice. I've been on a Zanaflex, Baclofen, Botox, and even valium regime since my stroke for high tone and spasticity. They have even recently upped the dose to 500CC of Botox with the extra 100CC going into my arm. Needless to say, I've spent a small fortune on this. But still, the spasticity level and pain it causes is increasing. All of this is beginning to feel like a losing battle and I hate it.

Before my spasticity progressed to moderate, and then to severe, I had voluntary movement of my elbow and two of my fingers. Now, even with all of this and weekly dry needling sessions, I can't  extend my elbow and have nothing voluntary in the fingers at all. My ankle no longer supports me without inverting. According to my OT and PT, I'm doing everything I should and can do. I've hit a major frustration point in this. I feel like I'm up against a brick wall and can no longer chip away at the mortar holding it together.

Is it time for a change???

What works for others with this condition? I understand this neuro-spasticity  is a mystery. My therapists and neurologists have talked at great lengths about the subject. I'm not taking just their words for it either. I've done quite a bit of research on the subject myself over the years. A lot of neuro deficits from my strokes, I can fight to recovery from. But this part I'm having trouble with. I'd call it quits and be okay with it if it wasn't for the pain that goes along with it.

I live and want to live life to the fullest, and I can't do it in pain. Having fibromyalgia just makes it worse. Pain, any pain, is amplified ten fold at a minimum. I've dealt with my condition for over a decade. I discount my pain levels mentally with meditation and stubbornness.I refuse to be held down and stop moving. This stubbornness isn't without its own set of problems. I do take everything slower on flare days, but I just don't lay in bed all day. I get up and do to the best of my ability in spite of the pain. In some respects I do not feel "lucky" that sensory nerves were not damaged by my strokes. I could honestly use some relief from all this hurting. But then, I also want to be a zombie taking this or that pain killer either. Aging hasn't helped. That in itself brings a whole host of other problems.

So I believe it's time for a change. After five years, there's got to be a better solution. I've been looking into baclofen pumps. Do any of my readers have one? I've got a few questions for you...
How long have you had it?
Are you satisfied with the results?
Would you do it again?
How weak does this IT unit make your functioning side?
How well does it work on your upper limb? Everything I've read said not very well. This is my main issue with it.

Having a pump is said to work better than the oral medication because it is delivered directly into the spine. This isn't a cheap option since the surgery alone is $30+K. The medicine to refill it has to be bought every 4 weeks (for a smaller unit) to up to every four months. It can cost up to $500 per refill. That's not my cost between Medicare and BC/BS. I expect to still pay out of pocket for some of it though.

I'm not a vain person so having the unit bulge my abdomen doesn't matter. If it works...then it's priceless. I'm not expecting miracles here. I'm desperate.The decision is still at least five months away for me. It will be my Christmas present to myself for a happier New Year if I decide to do it. I found a neurophysicist, at Shepherd Center, that performs this procedure 45 minutes from when I live, just north of Atlanta, so commuting will not be a problem for follow-up appointments and therapy. Like I said I've been researching it for a couple of years.

On the other hand, maybe just change up my drugs. But in everything I've read, I'm already on the most common ones. With my history of drug allergies, that's a scary proposition. But also given my history with general anesthesia and my heart stopping, that's even scarier. Mind you, I'm not a 'fraidy cat. I have some serious risks, but risk factors are weighed against the my decreasing quality of life.

As I've said before, I was well on my way to full recovery of my arm and leg before the spasticity set in so bad. The dry needling even with an electrical current running between the needles only gives me about 16 hours of relief from the pain and only 12 hours of relief from the muscle spasms (done weekly). That's with Botox 500CC 4 times a year), and 3 muscle relaxers, at almost maximum doses, that I take daily. I'm just tired of fighting this losing battle. If something doesn't work... fix it!

Nothing is impossible