Tag: rehab

What Happens Next?

I had done the five day ITB Pump trial.  I can say that the results were amazing! For a couple of days, I was able to feel how to walk “almost” normally again.

  • I “checked in” on Monday. After getting out of my street clothes and changing into the standard issue uber sexy hospital gown and settling into my room, the nurse took vitals and I set to wait for the doctors.  The doctors came in and gave me a rundown of what was going to happen the next five days (We were in constant phone contact prior to this day, so this was just a review).
  • The doctors then prepped my back for the insertion of the catheter which will infuse Baclofen directly to my spine. They start with  a super low dose. After the insertion, I am to lay flat on my back for 6-8 hours to allow the insertion site to heal. Otherwise, I run the risk of getting a spinal headache. Which according to  the doctors, is the worse headache one could ever experience. I was not even allowed to bend my legs. Apparently, I did not follow this direction to a T coz I got a headache that kicked my ass the next day. I wanted to do a test walk, so I lied and told the Dr. I was fine.
  • The first day at a low dose, I already felt a difference! My steps felt lighter and my foot was not curling in. The doctor and I walked a couple of times around the floor. My headache was getting worse, so we had to stop. And once again I had to lay completely flat on my back for a few hours.
  • Wednesday, the physical therapist came by to walk with me. We once again just walked around the floor. I asked if they had a treadmill, unfortunately they didn’t (i brought running clothes!!). I really wanted to try my new legs! She watched the video of me walking before the medicine was hooked up. It turned out that I was walking the wrong way. I was walking fast and steady, but I had adapted by walking while swinging my leg outwards to make big steps. I now have to relearn how to walk again.  I also walked around with Armando and Scotty, they even noticed the difference! Scotty said “You don’t walk like Frankenstein anymore!”
  • Thursday I was at full dose. My leg felt light, I didn’t feel any tone or spasticity, I wanted to run! Later that day, they started tapering down the medicine I was receiving. I had so many mixed feelings. I have many questions, I was anxious. I knew that when I wake up the next day the little bit of freedom that I had was going to be gone. My light legs will be gone.  I was sad.
  • Friday was check out day. The catheter was removed and I was placed on flat bed rest again for the rest of the day. The doctors came in and talked to me about the results of the trial. He was glad that I had thought to record myself walking as it served as a  good reference for the trial. We took a before and during video during the trial. Both the Doc and the PT  were very encouraged by the results, they think  I will get very good results from getting the implant. The decision is mine.

  • As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!
    As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!

The medicine is now completely off my system and I can definitely say that it made a big difference. I have talked it over with my family, I have thought about it the past few days. I am leaning towards getting the implant. Do I have HUGE expectations? You bet! I have some time to think about this, I have many questions. My family and I also have our reservations because as with any surgery there are risk. But seeing the difference, how could I even have a second thought?

 

Trials and Expectations

On Monday July 11th 2016, I will be checking in at Kaiser Redwood City for 5 days.  This time, I am going in on own volition.  I was reading up on post stroke treatments and there are many out there. Many of these options were not brought up by my doctors.  In my research,  I learned about the Intrathecal Baclofen Pump or ITB pump. Baclofen is a medication that I take that helps relieve the spasticity and tone that was the result of the stroke. In simple terms, spasticity is why my hands stay clenched or why my knee does not bend when I walk. I’ll get into detail about tone and spasticity on another post.

I have worked hard at getting to walk again, I can even try do a quick jog. But when I do, my left leg feels like it is wrapped in a cement block. By getting the pump, I hope that the tone on my leg would ease up enough so I could run again.  I won’t be in constant fear of falling on my face again,   and I wont be causing damage to my other joints.

This 5 day stay will be to determine if the pump is suitable for me.  The trial period involves the insertion of a catheter through my spine where the medicine will be delivered. During the hospital stay, they will determine if the medication is a good fit for me.  They will also determine the right amount of medicine that I will need. I am to get physical therapy twice a day to get an objective view of my progress or lack of. After the trial, if the medication is effective, I can decide if I will go ahead with the implant surgery.

I maybe putting too much hope into this trial. I am expecting that this trial will show that I will be able to run again. That my leg will function as it should again. That it will stop the painful spasms that wake me up in the middle of the night as if someone is tightening a vice grip on my thighs. I have very high hopes. After the trial period, I will have a few months to decide if I would want the surgically implanted in my abdomen with a thin catheter attached to my spine delivering medication.

The doctor has informed me that this method had worked very well for people with such high spasticity that they are not able to get up from their wheelchairs. In my mind, this sounded like this “if it helps people who cannot walk get up and walk again, then imagine what it can do for me!”. The doctor quickly burst that bubble by saying “you might not notice much difference in you” BUZZKILL!!!!

I am scared, I have high expectations, I am hopeful. If there is a chance that this will work, this trial is where I get to find out.

Please send out some positive vibes for me! Stay tuned!

 

Runner, Runner

Misunderstandings are the heart of many sitcoms. Anyone remember Three’s Company? Yeah it’s funny until it happens to you. Then you just have to laugh about it.  The first  night  in rehab, I had to use the bathroom and a  nurse came in to help me. As she helped me get out of bed, an alarm went off. Two nurses rushed in the room and asked if everything was alright. My thinking was still really fuzzy then so all the hassle just went over my head. The next day, as I was wheeled into the physical therapy room, one of the therapists was unbuckling me from the wheelchair. He made a comment on how I was double belted.

“what did you do?” he asked. I did not know what he was talking about. That evening,  I asked the doctor why my bed was alarmed. It had gone off a couple of times during the day.  I was curious. She told me that I have to stop trying to get up and get off the bed on my own. She threatened to place a safety enclosure over my bed to keep me in.  At this time, I still could not move the left side of my body.

This was the 'cage ' that was going to be placed over my bed if I tried to run away.
This was the ‘cage ‘ that was going to be placed over my bed if I tried to run away.

I could hardly feel my leg where did she think I was going to go? The next day, the pt once again said something while buckling me to the wheelchair. He also said that there is an alarm on my wheelchair. I wanted an answer. I needed to know the reason behind the tight security?

The answer made me laugh and to be honest a little proud of myself.  Someone the hospital had made a note on my chart that I  was a “runner“. The staff at rehab took that to mean that I have been trying to escape! I was flattered that someone would think I am capable of running away! I was also confused, where did they think I was going to go?

It took a couple of days before the staff lifted my security order. They had to wait for a team meeting, the doctors and therapists had to make a decision to ease my restrictions. It took two more days before I was given my “freedom”.