Using Botox related drugs to treat spasticity in stroke patients is becoming more widespread since their FDA approval in 2016. Strokemark has reported on several recent studies which tested this treatment. But what is it really like for someone going through it? Just a few weeks ago, I had the chance to talk with someone who has experienced this treatment first-hand, and he was kind enough to share his story with us.
First, meet Rick. About 9 years ago he had a stroke that affected his right side. After six years of going through rehabilitation therapy, Rick was ready to try something else to help him with his spasticity. His physical therapist suggested trying something new that just became available, the combination of two botulinum toxins, Botox and Dysport. These treatments work much in the same way by relaxing the tension in the muscles, but they are slightly different in their strengths. So, his therapist, his doctor, and Rick sat down together and discussed the potential upside and the risks. They determined he was a good candidate to try this, but Rick still needed to decide if the possible benefits outweighed the possible side effects.
Making a decision
Before beginning the treatment, walking was a struggle for Rick. He describes his ability at the time as the “Festus walk” after the Gunsmoke character. Learning to walk again was a very long and frustrating process for him. He was dealing with spasticity and the need to create new connections in the brain. Rick experienced an uneven gait, inexplicable stopping in mid-walk, and occasional falling.
He was ready to try anything to help. The Botulism family of drugs is a poison, so his doctor needed to make sure that Rick understood all the possible dangers of going through Botox therapy. Of course, the treatment doses are very controlled, but nevertheless, there are risks associated with it. After careful consideration, Rick agreed to this treatment which was brand new at the time. His doctor shook his hand and said, “You are brave for trying this.”
What does this treatment entail?
In Rick’s visits, the doctor selected the muscle groups that had the best chance for controlling spasticity. His physician attached an electrograph device to his affected areas so that he could find the right muscles to target. Once they were identified, the doctor was ready to begin with the injections.
Rick’s doctor used a small needle and slowly injected the medicine into the desired muscles. Each injection took about 30 seconds. Rick describes feeling a slight prick and then a cool sensation because the medicine was refrigerated. He says it didn’t really hurt, but of course, you can look away if you are bothered by needles.
In one instance, Rick started to feel like he could move his elbow a bit more freely after 30 minutes, but generally, it took about 2-4 weeks to feel the full effect of the medicine.
He received the injections in his arm and leg and never felt any loss of control. The treatment for his leg was regulated closely because a certain amount of tension was needed in the muscles to keep him standing. Therefore, the spasticity was not completely eliminated.
After one treatment of Botox (4 shots), Rick’s doctor sw and two treatments of Dysport (total of 8 shots) within a 2-year period*, Rick’s walking improved. His gait became much smoother, he no longer stopped mid-walk, he stopped dragging his right foot, and he didn’t fall anymore.
Rick has been happy with the results. Before starting though, his doctor carefully screened him. He was also in close contact with his health insurance to make sure they covered this treatment. In his case, Medicaid and private insurance covered this.
Rick’s advice to anyone thinking about getting this treatment
Although this has worked for Rick, he does warn that this sort of treatment should not be taken lightly. He stresses that anyone interested needs to be screened by their doctor, talk to their health insurance, and should read about the possible side effects. He says to be aware of the “black box warnings” that this family of drugs comes with. The Botox used in this treatment can migrate to other areas of the body and cause serious health issues, even death.
Ricks emphasizes how important it is to continue with physical therapy throughout this process so that you can build up strength in the untreated muscles. This treatment is relatively new so you want to find a doctor that has some experience. Rick says to make sure your doctor schedules follow-up appointments at 3, 6, and 12 weeks.
Thank you, Rick, for sharing your experience with this treatment and giving people an idea of what they might go through if they decide to follow this path.