Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions which I have had since birth but I didnt find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then 15) I lost the 1st cochlear implant in my right ear after 7 years due to a bad, accuring ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story


11 October 2010

1st brow suspension op...

7 oct - We set off to Newcastle about 11am from home and I wasnt really worried about the op  We got there for our appointment at 1pm with our eye doc who said that he would be doing my right eye instead of my left one because the left eye had a stye cyst on it and he didnt want to risk infection. We then went off to a different ward and went to see Victoria, who was one of Doc Turnbulls docs but she was running late so we were in the waiting room as always but before she came I had my PEG button changed  as it was time for my 3 month change .
Once she came up we went to a room, she checked out the usual stuff like the reflexes and and the usual questions that i have every year such as "how is your swallowing and feeding doing?"  just my general wellbeing. She seemed a bit concerned about my right leg as when she did the reflexes my right foot was little weak and she wated to know if i wore a splint in bed  which i never have. My parents were asked the same question when I was in ICU in 2007 as my feet tend to flop forward rather than stay upwards when i lye down.  Victoria gave me some exercises to do with my feet when i can.
After that we were free to go back to the hotel! i had an awful night and couldnt seem to drop off much to the annoyance of my parents.

8 oct -Just as well because I had to be at the hospital again at for 8am!! The roads were deserted which was nice and we could get there quick!!
once we were there, we had to go to ward 21, but we had to go to this eye outpatients ward first and get checked in and given my hosptial band as i was also staying the night as we had travelled 3hrs to get there and the doc had to check my eye the next day. They also asked the usual hospital Questions like a pre op thing. 

The nurse plopped an arrow on my right eye with an  arrow to make sure they have the right eye and then because i was worried about feling the locals, they stuck some numbing cream on me  It seemed like we were there for hours before I was finaly called for my op.
I was a bit terrified but glad i was half asleep to be honest due to the bad night.  They took me down to threatre about 3pm and dad came down to the theatre to hold my hand while the docs put the locals in.  It was really weird because i had my cochlear implant in as they said i could and  my sound went really weird like i was drugged up and in a bubble but i could still talk to the doc while he perfromed the op.

The locals froze the eyelid and the eyebrow  and into theatre i went. i was glad i could hold one of the nurses hands i felt that helped and the doc talking about my hamster Nev!  i felt at ease and relaxed.

There were periods which i didnt like because he put a cloth over my other eye as he worked on the right.
im so glad i had my cochlear implant on other wise i would have freaked out a bit! and im glad i could hear them talk!

After 45 mins in theatre I was wheeled out in a wheelchair to where my mum and dad were waiting outside.The bandage was packed on tight to keep the eyelid in place and it didnt hurt much unlesss i moved the muscles around my eyebrow.
I was then wheeled back to the outpatients again as we were still  waiting to go in our room on the ward.  I was pretty tired so i really couldnt be bothered at the time I think that helped!!
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