Although this is my first post here, I have quietly prayed for and cheered you all on for the better part of a decade. I have also found encouragement in knowing that I am not alone. Thank you for being here and for sharing your stories. Here is mine:
The incidental diagnosis of my cerebral AVM happened nearly ten years ago. Although I was not experiencing any deficits, the threat of a massive brain hemorrhage was enough to convince me to seek treatment. After consulting with four neurosurgeons and three radiation oncologists, I decided to have cyber knife radio surgery.
In the first year after surgery, I suffered from severe and persistent cerebral edema, a side effect of brain radiation. I also experienced what was probably a stroke brought on by either the radiation or the side effects that it caused. The good news: a cerebral angiogram done five years post op confirmed that my AVM was completely obliterated. I am no longer at risk for a massive brain hemorrhage. Praise God. The bad news: to this day, I continue to be challenged by spastic hemiparesis, a complication which began four months post-op.
In addition to being an AVM survivor, I am also a nineteen-year cancer survivor. Praise God. My battle against cancer taught me that, with faith and perseverance, I can overcome great challenges. Just as I refused to let cancer defeat me, I refuse to relinquish hope for a complete recovery from spastic hemiparesis. As a result, I have literally been in therapy of one kind or another for eight and a half years.
The following is a list of the therapies that I have tried so far. I have listed them in more or less chronological order. However, many of them have been and continue to be concurrent.
- Many months of a steroid, specifically Decadron, to control brain edema. Although I found it very difficult to tolerate, Decadron helped both my brain and my peripheral nervous system to heal from the trauma. Unfortunately, it also caused atrophy of my muscles, from which it has taken me years to recover.
- Intensive inpatient and outpatient physical, occupational and speech therapy
- Aquatic (pool) therapy
- Underwater treadmill therapy
- Equestrian therapy
- Chiropractic care
- Deep-tissue massage
- CranioSacral therapy
- Cold-laser therapy
- Acupuncture
- Adaptive downhill skiing
- Feldenkrais
- Therapeutic yoga
- M.E.L.T. (for releasing tight fascia)
- Non-invasive brain stimulation
- Blood-flow restriction training
- Dry needling
- Functional electrical stimulation
My hard work and persistence have paid off, and I have made tremendous progress. One year post-op, I was only able to walk with a custom-fit AFO and two canes. I have now been walking (albeit with a limp) without any assistive devices for six and a half years. I have regained full use of my arm and hand. My cognitive/speech recovery is also very near 100%. Praise God.
I continue to have weakness and spasticity which affect my leg and foot. Last summer, I participated in a three-week outpatient physical therapy program which used the combination of non-invasive brain stimulation and high-intensity physical exercise. My goals going in to the program included relearning how to jump and run. With the addition of an athletic ankle brace, I was able to achieve both of those goals before the end of the program. Praise God.
The latest addition to my therapies are functional electrical stimulation (FES) cuffs by Bioness. I have been using both the lower and upper leg cuffs for about three months. So far, I am very encouraged. In the short time that I have used them for walking and training in the PT gym, I have already experienced a significant reduction in my atrophy and in my chronic hip and knee pain. With the arrival of spring weather, I look forward to training with these cuffs on my bike. I am hopeful that they will help me to achieve my goals of recovering strength and coordination and overcoming spasticity.
My spasticity manifests itself in three ways:
- as velocity-dependent spasticity, which makes my muscles either freeze or go in the opposite direction when I change positions quickly.
- as clonus, a rhythmic spasm which makes my muscles involuntarily flinch when I would much rather be resting them.
- and as what my PT refers to as “tone,” which feels like invisible resistance bands that are constantly pulling me in the opposite direction from the way that I want to go.
Things that help my spasticity include:
- Therapeutic massage
- Acupuncture
- Chiropractic care
- An anti-inflammatory diet
- Magnesium balm
- Regular stretching and exercise
- Regular sleep
Things that make my spasticity worse:
- Caffeine
- Sugar
- Foods that cause inflammation
- Inactivity
- Too much exercise
- Emotional and psychological stress
I have been offered Baclofen, but never tried it. I have had enough experience with medications to know that I generally don’t tolerate them well. One side effect of Baclofen is that it can cause muscle weakness. I have never wanted to take a chance with a drug that could be counter productive.
I tried taking Tizanidine for short periods. Initially, it helped my spasticity. Unfortunately, as the drug built up in my system, it made me feel increasingly more sluggish and it caused me to have bad dreams.
The next therapy on the horizon for me is called Lokomat, which is robotic-assisted gait training. I hope to use it in conjunction with my Bioness cuffs in order to improve weight acceptance on my weak side, to break tone (recover from spasticity) and to relearn a more fluid gait pattern.
No one ever said life would be easy. I believe deep in my heart that the struggle is so worthwhile. In the eight years since I was hospitalized with a stroke, I have managed to return to my full-time teaching job, I have seen my kids graduate from high school and go on to college, and I have returned to independently doing the physical activities that I enjoy: riding horses, downhill skiing, snowshoeing, biking, swimming, hiking and gardening.
I hope that, whether you are just beginning this journey or are a seasoned veteran like me, you find encouragement in my story. I would love to hear from others who are also overcoming spastic hemiparesis. Which therapies have you tried? What has worked for you?
