Life is a Roller Coaster
Prashant has a history of lower back pain due to a fall 25 years back. Off and on we were consulting an orthopedic doctor for this who advised medicine and physical therapy. The doctor also mentioned unless Prashant does regular exercises and maintains correct posture (he has a sedentary job), his upper back is liable to become weak too. That was 4-5 years ago. He underwent regular MRI scans on his lower back to monitor any degenerative changes.
Last year, in May 2016, he suffered a heat stroke (which later our neurosurgeon referred to as a symptom of tumor). The tumor was pressing the nerves inside the cord and was given immediate medical attention by our local doctor, who advised an MRI of the brain. The results were normal. Thereafter, Prashant also experienced a burning sensation and itching on left side of his right forefinger near the nail area. It was intermittent, not persistent. We assumed it was a skin infection and applied ointment. Then he started experiencing numbness in his middle finger on the same hand. Four months passed by, there was no relief and Prashant started to experience weakness in both forearms. Upon consultation with the same doctor, he was misdiagnosed with Carpel Tunnel Syndrome. Further medication and physical therapy was advised. His symptoms became increasingly worse and that’s when I pestered Prashant to visit a neurologist. He examined Prashant and advised an MRI of his cervical area as he strongly felt there was "something else" causing the said symptoms. On December 4, his MRI revealed his tumor. The following days, we began researching and hunting the best neurosurgeon to operate on him. We heard multiple opinions and all advised surgery as soon as possible. After surgery, he had radiotherapy (as extraction was 99% and they couldn’t touch the remaining tumor due to fear of loss of body function). He also took medications to relieve his symptoms: his burning sensations and loss of sensations in his leg. As a precursor to radiotherapy,
Prashant was given a dose of steroids due to which he developed Diabetes on February 5, 2017. His blood sugar levels were normal before this. Being hypertensive and diabetic has pushed back his recovery. We do feel we have beat ependymoma, thanks to our good team of medical professionals and my family. I earnestly wish it never reoccurs again.
Our New Normal
His treatments have caused some side-effects, making it difficult for him to perform day to day activities like writing, mouse operation, lifting weight, buttoning his shirt and holding things. His balance is also affected and he can’t withstand exertion. Prashant has resumed a full-time office job but generally feels weak. Prashant presently cannot drive long-distances and during rush hours as his gross motor and fine motor skills have been impacted. For others living with this disease - keep fighting until you make your "new normal" as "near normal".
Being a caregiver also has it’s struggles. I am suffering from Limb Girdle Muscular Dystrophy, a progressive muscular disorder. So to be a primary caregiver for Prashant is extremely challenging. But being strong-willed and with blessings of God and loved-ones, we pulled through. We also now have a permanent helper to help us with our daily schedule. From our experiences, we’ve learned to be extremely vigilant of changes in your body and keep questioning your doctor until you find the right answers. You can achieve the impossible and win over tough situations. Keep the hope alive.
Life is a roller coaster. Enjoy the ride while it lasts.