Tag Archives: epilepsy surgery

Jason’s epilepsy surgery

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Jason went into the OR at 9.00am. Jason was calm, brave and ready for this surgery, this was going to make a big difference in his life.

My cell phone stayed clasped in my hand constantly checking it. The neurosurgeon wanted me to carry it in case there was a problem, a decision to be made. The waiting for news good or bad was brutal. The fear of  not knowing what was happening was overwhelming. With my whole being in an accelerated state of anxiety the only way for me to stay together was to pace back and forth, always sticking close to the elevator where the patients would come up from the OR. Everyone’s eyes were constantly fixated on the floor numbers above the elevator door awaiting their loved one. When the elevator floor number would light up everyone jumped up hoping praying that this is theirs, the doors open it’s not Jason, one other family is overjoyed. Where is Jason? Is he alright? My mind would be going crazy imagining everything that could go wrong. There were five or six other families in the ICU family room which slowly over the day dwindled to just two of us. The elevator floor number lit up. As I hear the elevator approaching our floor I hear many voices and a heart monitor, a steady strong rhythm..beep..beep..beep..I knew without a doubt that this was Jason. The doors opened, the best gift imaginable, it was Jason. He was surrounded by a full team of nurses, anesthesiologists and Drs. Jason was ok and doing well considering the ordeal he had just been through. OMG that emotion and feeling in my heart, so many layers to it. Such intense relief, joy and worry.

It was now 5.00pm. Jason had been in the OR for 8 hours. The main man, the hero of the day Jason’s neurosurgeon was on his way. As he approached I met his eyes looking for signs of concern. This unspoken exchange expressed in the eyes and face between the mother and your child’s surgeon is a language all in itself.  I was really overwhelmed and indebted to this man as we shook hands, the gifted hands that had performed a miraculous surgery and returned Jason back to us. It had been a challenging long surgery. He had removed a lot of scar tissue and some nodules which possibly were residual tumour since they had a vascular component to them. The issue of pressure changes and swelling was managed, they didn’t wake the tiger !

Jason was now set up in the ICU directly in front of the nurse’s station.  Jason sensing we were there opened his eyes and in a slurred groggy voice said “I’d like a Tylenol and a Coke please?” then fell back into his deep drug induced sleep. That was the best thing and so funny. Right away we knew Jason was ok. This was the Jason we knew. The nurses questioned me what does Jason need? I told them “a Tylenol and a Coke” they laughed and right away they knew what an amazing special patient this was.

I didn’t feel well at all. High pitch ringing in my ears, a cold clammy sweat, ‘I think I’m going to be sick’, I think I’m going to faint’, the mad anxiety of finding a vacant chair as I could feel myself starting to go. Of course nurses had spotted what was happening before I actually met the floor. A chair was slid underneath me, a paper bag put in my hand, a cold cloth on the back of my neck and my head down between my legs. Here I was in the middle of the ICU amongst all these critically ill patients and I had my own small team of nurses for 5-10 mins. I felt bad about using their valuable time but I guess a Mum on the floor is a real liability. They said ‘it is the shock of seeing your son in this state that caused your body to react this way.’

Arriving back the next morning I couldn’t wait to see Jason, I couldn’t get to his station in the ICU fast enough. Eagerly anticipating Jason I was met with an empty space. I sank. I will never forget that feeling. A nurse appeared “Jason has been moved. Jason did so well last night so he has been moved to the less critical part of the ICU” pointing to the other side of the room.  I’m sure my face said it all as she stroked my arm. “Don’t worry he is fine”.

There he was, he looked so young and angelic just quietly lying there, no sounds of fussing or moaning, sheets still smooth and straight. Jason had such a strong constitution. Even when the heart monitors were displaying raised vitals reflecting the trauma of  pain Jason still would never complain. The nurses and doctors had never met anyone quite like Jason and  this was where he got the label ‘STOIC’. Jason had this amazing ability to go deep within himself and to get on with the healing process.

His bed had been raised to about a 45 degree angle to help with any swelling.  He looked good considering less than 24 hours ago he was in brain surgery. I survey the monitors, all numbers look good. I notice that they have removed some of his head dressing plainly revealing the drain site,a clear tube of slow moving liquid protruding out of his head. I started feeling a little light headed. I hear an alarming CODE BLUE on the other side of the room followed by a mad scurry of staff.  Out of nowhere high pitched ringing starts in my ears…Oh no!!! Not again. Head is getting dizzy, Shit!!! I can’t faint now. In haste I spot a blue chair of some sort behind me, I grab it and start to collapse into it. A groggy voice says “I wouldn’t do that if I were you Mum” followed by snoring. I look and I am about to collapse into a commode ideally equipped with 4 wheels. I could only imagine the image Jason had when he opened his eyes and saw what his Mum was about to do…Mum dropping back into the commode, bottom getting stuck in the hole,the jolt setting the commode free to roll down the ICU aisle with Mum shrieking with arms and legs sticking up in the air. This scenario provided many laughs throughout the years.

It was a very hard week for Jason at the MNI but finally we were back home. Jason was resting lots and in less pain with each passing day. Since his surgery Jason had not had a seizure which was absolutely amazing and Jason was thrilled to know that. Possibilities were opening up!  It had already made a difference in the family’s anxiety level.

Then a change. At the incision site Jason began to have increased swelling. I was concerned. I called the MNI and they said as long as the incision isn’t infected it is probably normal post-op. Sure enough Jason didn’t have a temp but Jason wasn’t himself and I knew with a mother’s instinct that something was seriously wrong. I took pictures of the swelling and emailed them to the Neurosurgeon. He still said to wait and see. Two days later Jason is dizzy, vomiting, bad headaches, not well at all. The next thing we are at the MNI in the neurosurgeon’s office and yes sure enough he has a CSF leak. Jason was admitted for emergency surgery the following morning. I was so scared for Jason as he was still recovering from the first surgery. Jason was in the OR for about 4 hrs. Thankfully they managed to find the hole where fluid was gushing out. They repaired the hole with a glue type substance and sutures and wrapped his head very tight. They started an aggressive course of antibiotics. Jason’s strength and tolerance was unbelievable through all of this. Jason humbled doctors and nurses over this challenging time. Within a week we were back home and I was to remove the bandages within a few days and to report the findings to Montreal. Thank goodness such a relief to find there was no evident swelling . Surgery had been a success.

Soon after Jason registered himself to start college that fall.

Jason at the Montreal Neurological Institute

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Jason was now at the world renowned epilepsy center at the Montreal Neurological Institute (MNI). Jason’s neurosurgeon and neurologist were leaders in their field. I was so relieved that Jason was there. Jason liked his MNI medical team and they quickly grew very fond of him. The team in a short time got how Jason and I worked. At first they directed the questions to Jason but only to hear “You will have to ask my Mum. My Mum knows.” So soon enough the team would meet with me to discuss Jason’s case. Jason knew that I would go to the edge for him and get him the best and this took a lot of pressure and worry off him which became evident to the doctors. Of course Jason always had the final say but at least I could do all the groundwork for him. I recall in one particular meeting a couple of doctors who were brought onto the team assumed that I was a neuroscience nurse from the way I was briefing them and discussing Jason’s medical case to date. They were surprised to discover that I was a MUM and a horse stable owner!!!!  I would come to the meetings armed with my detailed notes, copies of all MRIs, CT scans and pathology reports. It must have looked  funny seeing me standing with them, the only one not in a white coat, looking at the images on the screen. I knew Jason’s brain images so well. They said I helped them tremendously as they took copies of my notes. It was a great relationship and Jason would grin when he saw me standing with the team and always became very relaxed knowing Mum was at the helm.

Meanwhile I had to find somewhere to sleep. I stayed at a hotel down the hill from the hospital for the first few nights but at $100 per night for a month I couldn’t stay there. A nurse at the MNI told me about a nunnery within walking distance that sometimes has a small number of basic rooms w/shared bathroom for relatives of the ill. With Jason now asleep and the nunnery business card in hand I set off to find it. I followed the little map on the back of the card. There rising from behind high stone walls was a group of imposing grey stone buildings with a spiral poking up through the middle of them. I wasn’t sure about this. I pushed on a heavy old wooden arched door somehow expecting it to be locked but to my surprise it creaked open. The buildings were cold and gray, sober in appearance with many windows which immediately made me wonder about the nuns on the other side of those windows, what an austere life it must be. There was not a soul to be seen but I felt like I was being watched.  A sign that said visitors with an arrow pointed to a small plain door. It was locked. I pressed the buzzer. An unpleasant loud crackling noise followed by an elderly woman’s voice “Allo?” met my ears . I introduced myself and my situation. There was no verbal response just a loud long buzzing noise and a pronounced click. I was in. No sound just my footsteps echoing on the highly polished floor as I bravely walked down the massive corridor, still not a soul to be seen. At the end was an elevator that mysteriously opened right ahead of me. I go to Main. It was eerily quiet. Everything was so grand and elegant in religious detail.  I spotted a  room with the door open. I walked in. A frail woman hunched over is barely visible from behind the solid dark oak desk. I said “Hello” carefully not to startle her. She raised her head revealing a delightful glowing face framed with large glasses complete with a mass of shocking white hair. She gave me a lovely smile and a nod  “Allo!!”,  this was the buzzer voice! Communicating with her was difficult due to language barriers but somehow we managed and I had a room.$25 per night including breakfast!!! Plus they would pray for Jason each day!

When I got back to Jason with the news he couldn’t believe his Mum was going to be sleeping at the nunnery and having breakfast with the nuns. Jason got a lot of mileage out of this and loved telling the staff which was fun for him. This kept him amused and interested each day with my tales from the nunnery. Jason would tell me “Mum you better not try to sneak any wine in” so we had lots of fun with it which was great.

Jason was visually monitored round the clock. Jason’s scalp was covered in 25+ electrodes recording intracranial activity. Jason had to lie in bed under this observation 24 hours a day for just over 3 weeks. Jason could only leave his bed when accompanied to use the bathroom or shower. The days were very long. I arrived at 8.30am-8.30pm. This daily living was a true testament of Jason’s patience and determination. Other patients weren’t doing so well with being confined like this and would be angry and frustrated. Jason would just stay quiet, focused and positive. Jason’s medications were gradually decreased to nothing in order to see the full effects of the seizure. This was a very stressful time. It took many of us to ensure Jason’s safety. The seizures increased in number and were very explosive and extremely physical. Once enough data was gathered Jason was gradually put back on his medication. This was very tough on Jason’s system…nausea, dizziness, headaches….. Heartbreaking but I just kept reassuring him that it would get better soon as I held the sick bowl. I always had to stay strong and positive with a slight humorous lightness so Jason would not be alarmed. As long as I held this persona Jason knew everything would be ok. I could not show any sign of worry as Jason would pick that up immediately.

The team now knew where the seizure focal point was. The seizures were coming from scar tissue from a previous surgery. They expressed that the seizures were about as bad as they can get and no doubt were hard to manage. They finally understood what the family was trying to cope with. They felt epilepsy surgery would definitely help Jason but they had never had a case like Jason’s where there were existing tumours. The left acoustic neuroma causing brain stem compression was making them nervous. There was no previous data to go on. There was the added risk that while in surgery the brain pressure could change and the brainstem could shift up or down resulting in a brainstem stroke.

To not do the surgery also had risks. The unpredictability of seizure onset and lack of seizure control was a constant major threat to Jason i.e. walking into traffic. The intensity of his seizures added a very real risk of cardiac arrest due to the brainstem shifting from pressure change in a seizure so life threatening risks were everywhere. We all knew that no matter what Jason was on a mission for the surgery. Jason felt safe with the team. After speaking with Jason the neurosurgeon agreed to do the surgery. The surgery approach would be to go in quietly and slowly, sneak around the tumours, do the epilepsy surgery by removing the scar tissue and then get back out quietly and slowly, all without waking up the sleeping tiger! I had complete faith and  trust in them to make the right decisions while holding my son’s brain in their hands.

Surgery was scheduled; we were to return in 6 days. Meanwhile we could go home and see the rest of the family 2 and 4-legged!