Carolina’s Story
I look forward to being discovered and leave my voice as a legend and Canadian born who suffered a lifetime of medical issues and never let my voice end as the angelic voice to project the words no one else will express with her finesse and integrity.
In 1998 she underwent Brain surgery for being a victim of a scar in her Brain from a surgical procedure performed at the age of 16 months causing her to suffer epileptic seizures for 40 years and declared dead three times in her youth.
She underwent the successful surgical procedure on September 11th, 1998, at the Montreal Neurological Institute and Hospital of Montreal under the attention of the Late Dr. Frederick Andermann and Retired Neuro-surgeon Dr. André Olivier and became history in the Canadian and American Medical journals for others to understand the importance of speaking up to the medical professional.
She was the spokesperson for the Annual Neurological conference which in 1998 Montreal was the Host City. Under the recommendation of Dr. André Olivier, she was the guest speaker along with her Late father Mr. Francesco Caruso (because her mother was at another medical hospital undergoing knee replacement) to understand that patient’s can help the medical professionals to undergo more efficient procedures to benefit the public and private patients who could benefit from future surgical procedures.
She had been interviewed also at Yale University – Medical division of Neurology and was seen by Neuro-surgeon Dr. Small.
Once she returned to Montreal and with the recommendations of Yale specialists. She would convince the MNI to undertake her as a patient to get the surgical procedure.
Carolina did not want to go elsewhere and have the surgery done. As a proud Canadian and knowing that the MNI could benefit her status of Epilepsy she convinced them to do the Surgery, or she would go elsewhere in the world and make public statements that her own country and city specialists would not operate a Canadian born but take Funds to do private surgery to save foreigners lives. This convinced them to go ahead and proceed…. the rest is history.
My experience living with epilepsy
My success story and what difference it made to my life
Daily Medication reduced to nil after 5 years of gradual decrease in dosage.
Driver’s license re-instated after a 16-year suspension and medical codes removed.
Travel restrictions lifted after a lifetime of precautions.
Medic alert bracelet no longer required. Lifted the continuous questions of everyone who saw it and questioned the reason.
Trying to lead a normal life after being a victim of the medical system here in Québec, from the scar made on my brain from the ear infection at the age of 16 mos.
Neurological Evaluation
Behavioural examinations under the supervision of Late Dr. Catherine Metrakos, at the MCH who specialized in the treatment of medications to control epileptic seizures in infants up to their adolescence, during her Case Study PHD thesis. I was her case study.
Treatments via medications primarily barbiturates, such as Phenobarbital, to control aggressive and temperamental behaviours to reduce the occurrence of epileptic seizures.
Electroencephalographic (EEG) examinations
The results were successful brain surgery for the treatment of epileptic seizures
Injection Therapy prior to the availability of tablet medications.
Anaesthetic’s (group 1&2) reactions to patient’s tolerance levels, allergy tests
Gastro-intestinal studies – enzyme intolerance levels; fructose, sorbitol and lactose.
My diagnosis, surgery and journey
I was diagnosed with epilepsy at the age of 16 months and was injected with 180 shots of phenobarbital to keep them from happening.
As I grew into a child the situation just got more serious….by the time I was 7 yrs of age the medication became available in tablet form. The same barbiturate phenobarbital taking 6 to 8 tablets per day.
It was not until the age of 13 that the seizures had finally stopped …be it the prayers to Saint Anthony for 13 years or the development of the human body, only God knows.
Unfortunately, it did not last long by the time I was 15 years of age they returned drastically and seriously sever and declared dead for the first time remaining unconscious for 8 hours of 3 in my life so far.
At 16 years of age again being unconscious for 8.5 hours declared dead once again
At 19 years of age got hit by a car while on my Bicycle and once again 7.5 hours and declared dead the third time.
For some reason the Almighty God said it is not my turn.
Medications were added to the phenobarbital and Dilantin/Phenytoin was prescribed with a lifetime of side-effects.
Challenges I've experienced
This photo is with Msgr. Francesco Leo whom I met at MDC when he was assigned there to complete his studies just before I entered for the Brain Surgery. His prayers were special to me. I hope to see him as our Pope in the future and in my lifetime.
The fear of companionship from those who cared and could not handle the shocking effects to me having seizures, because epilepsy was seen as a mental disturbance and not only as the behavioural disturbance making a person normal in all other means of humanity.
I still stand single and became stronger as an individual refusing to make me feel de-graded because of what I suffered being the victim of a malpractice surgical procedure at the age of sixteen months.
Never would I let someone tell me I was not as smart as them or beautiful as them because I was an epileptic.
I was allergic to local anesthetics and still am today, so I had to make sure I was not injected any, if I woke up too soon and the surgery was not completed, they were to keep me awake and sedated.
The surgical procedure was 8.5 hours and I recall waking up…happy to be alive abut still did not know if I could speak until the next day.
Stigma or misconceptions I've faced.
I proved myself over and over again as a gymnast champion and track n’ field and could not compete on high levels because of my seizures and the expenses of the medications etcetera to keep me in school within the public sector to show I was as normal as all the others.
Could never participate with equipment that could be dangerous to me or others at times of seizures.
Restricted in taking trips or going camping.
To some people this all seems life taken for granted to me it was a challenge.
I loved to sing then and still do on a regular basis. This was the art that could never hurt others physically from my body to others nor to myself.
When the doctor finally listened to me at the 1998 medical conference Dr. Olivier decided to have me sing while I would be sedated on the OR table and I agreed, so I sang one of my favourite song New York, New York the Liza Minelli way for which I had a standing ovation at a Benefit concert I volunteered at the famous QE hotel in Montreal.
Medications or surgery made a difference or not been able to make a difference in your life?
The effects of the Phenytoin were tremendous on my physical body to the extent that 25 years after the surgery and 20 years no more of that medication my human body is still overcoming the side effects. Taking away the beauty of my skin and damaging my liver.
Suffering allergies and abdominal pain to the point of polycystic cysts …surgeries galore…medication side effects…and still dealing with this today.
Conclusion
Why I am sharing my story
I want to share my story because I know how important it is for anyone to express themselves to speak about themselves to others whether it be reasons of;
Culture, Pride, Integrity or whatever their personal reason is ...I know that people love to hear about others and never speak of themselves…I say it is best to speak out and be proud of your achievements that to bury them with you. If I could save one person’s life and I know I have already…It is worth every moment of it whether you know the person themselves or know because of what I have done has benefitted someone else in this world and in this planet.
Be aware of Epilepsy and understand it before giving your opinion
It is one of the most important things in the medical field to raise awareness of all the symptoms and details someone suffers in their lifetime.
There are no two people alike, so the suffering we experience may trigger a sentiment to someone else who may express it differently because to them it signified a different feeling.
When you doubt something about how you feel express it to the medical specialist, the more we speak about it the faster and more efficient we will have the solution.
Never let anyone tell you or let them even think it …
That being epileptic you cannot be normal...
‘’It takes patience to be a patient’’
but it takes…
Tender loving care (TLC) to listen and understand what the patient, who suffers epilepsy has gone through at the time of a seizure.
Hope this story can encourage those who do not want to speak to come out and share their feelings.
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.