baclofen Archives * Survived to Thrive by Momma Berna

Speaking Up

In August of 2016, I opted to have a Baclofen pump implanted in my abdomen. It was my hope that the pump would help reduce the spasticity in my affected leg allowing me to run again. Of course my decision was based on more than just running. I wanted to be able to keep up with my boys, be less conscious of how I walk and gain the confidence I had lost. I understood that the pump is only a tool, and I would need to put in the work to reach my goals. And I was and am willing to put in the work. I stretched, exercised and stretched some more. I am putting in the effort to rewire my brain to recognize that my foot is actually a part of my body.

One year and two months later, I have not seen much success from the pump. I noticed small changes like my foot no longer curls up allowing me to wear sandals again (yay!), my foot now lifts completely from the ground allowing for a much easier heel to toe movement. Although it still happens once in a while, my leg no longer swings out from my hip when I walk. Otherwise, the spasticity is still high which results in my leg still feeling like it is 50 pounds heavier than the rest of my body, my knee still does not bend when i walk giving me a very awkward gait and poor balance.

One might think that running is simply putting one foot in front of the other in a faster pace than walking.HA! The biomechanics of running is complicated so I will not even try to explain, but let the experts educate you.

All my life I have been conditioned to listen to my doctor and to follow orders without question. After all, doctors know everything, right? Naah.

My email to my doctor got an auto “out of office reply” so I am waiting for him to get back so I could discuss my issue with the pump. I have been warned that the tone in my leg might be what is holding me up. Hence, the hesitation to raise the dose. I have told the doctor that I feel it is much easier to work with no tone, than too much tone. I’ve not tested this theory, but i am willing to try if I am given the chance. I am willing to take the chance. So, bring it on!

I understand doctors are cautious, I understand there are protocols to follow but I know my body. I know how far and how hard I can push myself.

The New York City Marathon is happening next weekend. NYCM is my bucket list race and it was my goal to run the 26.2 miles this year. I have not given up.

I may have overestimated the “power” of the ITB pump, but I do know that I had put in the work. And I am willing to put in more.

Much love,

Momma Berna

Do You Have the Time?

Let’s talk about doctor’s appointments. No one ever really looks forward to them, they take up a lot of time and we don’t usually get the best news from a doctor’s office ( don’t eat that, lose this, start doing that). So when we head to an appointment, we already some anxiety building up.

Earlier this week, I had an appointment with the Physical Rehab & Medicine doctor. My husband and I left the house one hour before the appointment which was 11 miles away. But this is the Bay Area and the traffic is a nasty bitch. Even with the extra time, we were going to be late. I called the office to let them know. The person I spoke with asked how late will we be, I said about ten minutes. She replied “Oh okay, that’s fine. If it’s fifteen minutes, we will have to reschedule”. We made it and were only five minutes late! Yay! I checked in & was informed that the doctor was running 20 minutes late! Half an hour later, they called me in. As soon as I stepped into the exam room, I was once again told “the doctor will be right with you, he is with another patient.” Really ? Really? I called to tell them we were running late, they couldn’t have told me “ oh that’s ok, take your time. Tell you what, stop by and grab a coffee. “ Instead, I was sat in the exam room for another 25 minutes. I had done some complaining on Facebook and the only magazine in the room was a year old copy of Arthritis Monthly. It was a bad time for me to leave my Kindle at home. I was scheduled for an adjustment of my Baclofen pump and Botox for my arm. The doctor arrived, apologetic. He apologized for being late and he apologized for not having the adjustment machine! There is only one for the Santa Clara area. Hey, I know medical equipment can be expensive, but this is a big hospital system!

I got Botox shots for my wrist & hand. I have to choose where I think it would be most helpful as I can only get so much Botox at a time. The Botox is only effective for three months, so in those three months I have to work, work, work my hand! See, all these treatments are temporary. The hard work of re-wiring is all up to me.

I made another appointment for the adjustment, keeping my fingers crossed they will have the machine that day. Getting to appointments is still complicated as I am not driving yet. The doctor wants to do another assessment.

Thank you for reading through my rant. I know it is WAY too much to expect to get a courtesy call from doctor’s offices to let their patients know that they are running late or them to consider that our time is valuable too.

Have you had an experience similar to mine?

Does your clinic or doctor give you a courtesy call if they are running late?

Much Love,

Momma Berna

Pump Me Up

A few weeks ago, I underwent a trial to see if I was a candidate for a Baclofen pump As the results were positive, I elected to ahead and go through with the surgery. The doctors told me, that there was going to be a two to three month wait to get something scheduled. I was eager, but was not bothered by the wait time. I was going to use that time to work-out, strengthen my core and just get stronger all over, After all, I will not be able to exercise the way I am used to for 7 weeks after the surgery and there will be no pool exercises till the incision heals (one month).

i will miss Aqua Zumba! — I will miss Aqua Zumba!

One week after the trial, the doctor called and told me that there is an available time on August 25th, a mere three weeks after the trial! I think I mumbled something that goes ” Like, this August? In like two weeks?.” The doctor replied that I can have the rest of the day to think about it and to let him know the next day what my answer would be. I panicked a little, thinking I let go of an opportunity. I talked things over with Armando and we both agreed to give it a go.

The day of the surgery came, we check-in and get settled into the pre-op room. As soon as I get into my hospital gown, the nurse told me that the surgery time was moved forward, The surgery in front of me got cancelled.

I look too happy for someone who is about to go under the knife. The drugs must be working already.

Waking up, I am now officially battery operated. The battery would last seven years, but I would need a “top off” every few months.

To be honest, I expected to “run” out of the hospital. I didn’t expect the pain that I was going to be in. I knew going in that I will be given the smallest dose to start with but it was still disappointing that the result is not instantaneous. It was like opening a much desired Christmas present, but the major parts are still missing. The medicine will be slowly adjusted until it reaches the best therapeutic dose. I now need to work much harder as I have been given a major tool for recovery. I do have to take it easy for a few weeks to let the “equipment” settle into my body. This next few weeks I am only allowed to walk, lift no more than 5 lbs, no twisting and no reaching up, no sit-ups and no jumping. Yikes! I really have to watch what I eat to stay healthy.I will be seeing my physical therapist soon, so I will work with her on safe and effective workouts.

One of the nurses asked me what my plans are now that I have the implant. I had only told my close friends and family this goal:, I plan on running the NYC Marathon in 2017. I will enter the lottery in January, and if I do not get picked through the lottery, I will enter as a fund-raiser. I heard a saying once (not really 100% sure of the words) that goes “If you let your intentions known,the universe will conspire to make it happen” So here you go universe I have set forth my intention: I will run 26.2 miles of NYC!

Much Love,

MommaBerna

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!

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!