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 or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing 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

8 April 2010

Newcastle update 2010 part 1...

Me and the parents set off to Newcastle a day early as we always have to be at the hospital early and it takes us 3 hrs getting to Newcastle. if we had a 10 am appointment like we did this time we would have had to set off about 6am! (and im not good with reeeeeeally early wake up calls!) so we always book into a hotel the night before so we can relax for a bit before the hospital.

We got there for our 10am eye check where we were waiting about 2 hrs (urgh) when we finally got in, I was prepared with my eye op questions written on a paper! The eye doc took a look at my eyes and told me that it wouldn't be worth doing an eyelid lift because my eyelid muscles aren't strong enough and if he did it my eyes would be open and wouldn't be able to close them! which wouldn't be good! Instead he suggested an "brow suspension" which involves putting a tiny bit of silicone in your brow which pulls your brow up a bit pulling up your eyelids and giving me more open eyes in the process. its a sort of cosmetic procedure but it's used a lot for mitochondrial patients concerning the Potsis situation.
This op has 95% success rate and 5% failure. Although, the problem is, they can only do one eye at a time otherwise I will be spending a few days blind with patches on my eyes! He told me the waiting list is 6 weeks if i wanted it done. I would have to stay over night in Newcastle because of the risks I've had in past with operations and he wants to keep an eye on me. (Why can't every hospital be like Newcastle Victoria hopsital?? they are ace there!) Normally, he would have sent me home the next day and check up on me but thats not an option as we live 3 hrs away. He told me I would have to have it done under a local rather than a general anesthetic due to my risks in the past with my mitochrondria and it would be faster too. Doc also told me i WILL have a black eye afterwards. eek He has let me know about it and says I could talk to someone who has had it done and see the after affects from it and that its totally up to me when I want to have it done. Which I was not quite looking forward to that coz i REALLY wish I didn't have to make that choice...

newcastle hospital update continues in part 2
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