It was a busy week with medical appointments. On Monday, February 27 was a urology appointment to change my supra pubic catheter, which drains urine into a leg bag.
Next, was a visit to the wound clinic. I had developed a blister on my right heel from rubbing against my night braces. The nurse practitioner pronounced my heel as healed, so now I’m ready to participate in the next season of Dancing With the Stars.
And the capper was my appointment with Dr. Yablon at Mary Free Bed for the Baclofen pump refill. I have been with Dr. Y since my inpatient days at MFB for 2 1/2 years. He has been in practice for over 30 years and is an expert on the baclofen pump.
In a nutshell, he has been unable to solve the problem of my intense muscle tone and spasticity. He has called me “uniquely unique” in that every SCI is unique but my issues go beyond any of his experiences or research.
Baclofen is a muscle relaxer that works on the spinal cord nerves and decreases the severity of spasms and muscle tone. The baclofen pump is a device surgically implanted next to my abdomen. The pump delivers baclofen to the spine through a catheter, which is a thin flexible tube.
I had it surgically implanted in February 2019, five months after my injury. I have done a lot of surgeries, procedures, and tests but nothing has helped alleviate the pain and tightness.
I tried serial casting serial casting a couple of months but my tone was so intense it caused pressure sores. This constant wear is contorting my body.
- Inversion of my right leg
- Three surgeries on my feet and toes
- Inability to bed my knees without assistance
- Difficulty straightening my elbows
- Only two functioning fingers on my left hand
Doctor Y said there is no playbook to go by. We are trying to write the playbook as we go. The next step is for me to schedule a consultation in Chicago about doing a morphine trial in the baclofen pump. I also have an appointment later this month for Botox treatment on my arms and left wrist. Dr. Yablon also increased the dosage for my oral medication of Flexeril.
This appointment lasted about two hours. I was physically and emotionally depleted by the end but also excited to schedule the consultation. I’m very fortunate to have Dr. Y in my corner, along with my case manager Vicki Pahl. I’ll keep everyone updated through this progression and keep your fingers crossed for me.
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