6 months of radio silence...

6 months radio silence...

I had my Laser Ablation Surgery on February 21 2019. Me and my mom woke up early to get to the hospital. 5:45AM is when they would like you to be there, you get into a gown, get “fun” I IV (I’m used to it). I first talk to the neurosurgeon(s), the anesthesiologist, I get marked on my ear on the correct side of my brain that will have the surgery…ablating. This would be my 7th time doing this…at this point I'm not scared of having any surgery. So skip ahead to the OR, I’m relaxed most likely due to some medication, Dr. Spencer does a pre surgery pep talk speech, my favorite. The anesthesiologist said time to go to sleep and I went to sleep.  A really long nap, 13 hour nap. They didn’t finish until 8 pm I was told. 

They told me the week before when I signed the paperwork for the surgery said lots of things might happen, walk..clumsy...I could deal. Me, my sister And My mom all knew the risk Involved. But when I woke up I had complications that we had never thought I could have or would have foreseen. 

Not in a million years. It’s like my brain deleted 50-70% memory. I only recognized a few people: Dr. Spencer (Neurosurgeon), Dr. Chiang(Neurosurgeon), Dr. Farooque(Neurologist), Louise(My Mom), and Spencer(My Dog). It felt like everything else was deleted. Gone. I was so Incredibly sad and Utterly confused. They did tests, with numbers, pictures, I had to draw a clock… And obviously I failed Miserably, which made me more sad and more confused. I didn't understand what was happening to me. 

Eventually I got names of people that I knew are people that came into the room and then I forgot them again oh, but I was trying. My boyfriend's last name is Gibson, like the guitar, no relation. I forgot his name too, I knew I had a boyfriend oh, but I didn't remember his name, it had something to do with the guitar, so I called him guitar guy. Eventually I remembered his name, and I kept saying his name again and again and again. And eventually it stuck. I've been with Chris for eight years now and the fact that I had forgotten his name that tore me to shreds.

I couldn't believe that my brain had done that to me. Nurses and other doctors came in with flashcards and asked me what it was and I knew what the things in the cards were in my brain but I tried talking and nothing would come out or I stuttered.  It was so irritating, I tried again. they came back the next day and the next day. Eventually I got more and more right some were similar were not correct but it was close. I said binoculars instead of glasses. It turns out I had partial aphasia. Do not ask Siri because it's depressing as hell, Google it,  but even then it's still depressing as hell. Anyways eventually I was discharged. 

Me and my mother went to Staples and got flashcards for the ABCs and 123. And we did it again and again and again and again. In the beginning I could only say three cards at most. I could say d for duck an R for ruble(Like Russian currency), and Ruble was not on the card it was a ring. So obviously I had a long way to go. Eventually I got all the cards. I still have trouble with numbers. I still change the she to he in sentences. Obviously I had to re-learn my ABCs so my texting and so forth was horrible so I took a vacation from all of my technology, thank God for emojis I did not know what I'd do without them!

Week after I got out of the hospital they sent me to  Kessler Rehabilitation. I went from 1-4pm, Monday, Wednesday and Friday, it was tiring. I would do three types of therapies. At 4:30pm it’s nap time! 4-5 hour naps, can you blame me? My brain and body were shot. Sometimes I slur (a lot), and by the end of the day I just really don't want to talk because my brain is tired and it just wants to sleep cuz it's been working all day and it's tired. 

On May 6th, I had my first cluster in months. Seizure free for 2-1/2  months. I was walking perfectly and talking pretty well. And that cluster set me back it felt like months. That's when my neurologist, neurosurgeon, me and my mom decided we are going to go to plan B.

I am going to go and have a neuropace implanted in my head. Yes, I know more brain surgery. I can't remember how many brain surgeries I’ve had? I've really lost count. 

Anyway, on July 23rd, 2019 I had the neuropace implanted on the right side of my skull by Dr. Gerard At Yale New Haven Hospital in New Haven Connecticut where I've had all my brain surgeries. I was so scared I would wake up and have partial aphasia once again(might), I would have the pain in my arms which I always have having anesthesia for hours every time does that to me. I know I had to do the surgery we've tried everything else I've tried every other drug this is really my last ditch effort, so I prayed right before I fell asleep. 

7 hours later I woke up from the anesthesia and I started talking. I didn't have any slurring or any problems. I just wouldn't stop talking I was so happy. I was so happy I almost started crying. The only thing is my head hurt but then again I had brain surgery.

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At this time, at least I can walk straight, not look like a drunk which I did right after my surgery in February, talk monetary well most days unless I have a migraine then all bets are off. All in all I think I'm doing pretty well. Today I am still going to Kessler for Speech Therapy twice a week. It’s a huge. I still have trouble by the end of the day but my brain is tired. My brain is tired, worn out. Can you blame is? Four brain surgeries in one year.

Edited by Louise & Sarah Harris


"Shaking In My Boots"

Hey everyone, I don’t know if everyone who reads this post will know this saying. “Shaking in my boots” is another way of saying you’re scared or terrified…and that is how ai feel. I’ve never felt either of those ways at all. Besides my surgery coming up this Thursday, I’ve had 6 other brain surgeries. It’s okay to be scared though. if someone was never scared…honestly I think something was a bit off about that person.

So I am counting down the hours. Me and My Mom are driving up to New Haven tomorrow and having Lunch with good friends. (Connecticut Style Lobster Roll…YUM)

Have a wonderful evening.

We're Back!: Trip To Yale New Haven Hospital

Last week, Mom, Chris and I drove from NJ to New Haven, CT for my first appointment up at Yale New Haven Hospital (YNHH). We went to talk shop with Yale Epilepsy and make a plan for the next few months before my surgery. I even got to see Dr. Spencer, the neurosurgeon who operated on me 10 years ago and some of his team who I consider family. While we were there of course me and my trusty Google Pixel 2 XL snapped some pictures in the car while my mom was driving. By the end of the appoint me we had come up with a clear plan and as of today we even have a date that we will start all of the testing, August 15! So soon. 

family.