Brow suspension email...

As you know from the Newcastle blog, I was waiting for someone to be in contact with me about the brow suspension lift that has had the procedure done. Today I got that email, and he hasn't had the same way of procedure because he had some tendon taken from his leg to do it but he is having the sillicon one done on the other eye in June so I might wait til then when he has had it done and I can ask him how it went and see the difference in his eye. I have asked him some more questions so im waiting for yet another email from him! Then I will make my choice wether to go ahead and put myself on the waiting list or wait ttil he has had it done himself.

CI or not to CI, that is the question...

It is no secret that a Cochlear Implant is a whirlwind journey to go on. Some have said it's like learning to hear all over again. I am sometimes surprised by how people take to their CI.

For example, when I had my first CI done, there was a girl who had it done the day after me and whereas I took to the CI like a duck to water when I was switched on, the other girl struggled with it and didn't wear as much as I did. I found that surprising but everyones journey to hearing is different and I can understand that. I have met people who find it hard to get to get to grips with their new sounds because when they are switched on, sounds can be robotic/muffled/sound like you are underwater. It takes a lot of hard work and patience to get to grips and get used to the sounds if you are an adult who has been deaf for a certain time. I find that children often find it easier to get used to these new sounds and wearing it than adults. Sometimes, there can be a lot of pressure for them to be able to hear which is unfair because it such a big thing to go through and it cant be easy. My good friend Vivie has admitted to me she struggled with it at first and she felt pressure to perform with her hearing which i feel bad for her because I wish I could have been there for her when she was switched on and reassure her that she can wear it when ever she feels like it and that there's not real time span of when you start to get used to wearing it or hearing these sounds. The moral of the story? Everyone's journey is different. There will be people who take longer than others to get used to it. There is no real rush in learning to hear. Go at your own pace and don't feel you are letting people down because you aren't. Instead they will be proud you are at least TRYING. if you don't like the CI, thats ok too. It isn't for everyone. No one will hate you because you don't like it. If they do, thats THEIR problem!

the waiting game...

I'm still waiting on information about the brow suspension op. The doc I saw at Newcastle will try and find someone who is my age who has had it done so I can talk to them about it and see how its improved their life. Having drooopy eyes alters your vision a bit, seeing double or getting headaches because you are straining them. I also got most of my blood tests back and echo and they were all fine except one blood test but the doc said that was normal in mitochondrial patients

They are also gona send me some leaflets on it through the post. I do want the op but I need to find everything about it first! Im in no rush

Newcastle update 2010 part 2...

We then went over to the BRAND SPANKING NEW part of the hospital and by this time, I was totally exhausted from walking around the hospital and the combination of not sleeping very well meant I was so tired that I was getting achey and couldn't walk far so they decided to give me a wheel chair to go round the rests of the tests because Newcastle Victoria is really huge and lots of long corridors meant a lot of walking. I had a brief chat with the mitochondria doc about how I was getting on with things. I then got wheeled to have my echo on my heart which was a bit uncomfortable but all was fine! Then I was wheeled to get a blood test which was OUCH! coz it was in a while as they took about 15 vials of blood!!! THHHHHEN it was back to the mitochondria doc to see the dietitian as I have been losing weight despite being on the feed. So we have decided to try another feed and see if that works. Our dietitian in Huddersfield should really be keeping an eye on me but we haven't heard from her since last year! The team at newcastle are great because they understand about mitochondria and take it seriously and keep an eye on me. just a shame we have to travel 3 hrs for that! So for now the priority is my eyes and wether I have the op done. So had a lot to think about on the way back home. i didnt cry the entire time i was at hospital but i shed a tear in the car. it was a lot to take in from the whole day.

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

Cochlear wire

2 weeks ago, I was my cochlear implant was experiencing a few problems as when I woke up, it wouldnt switch straight on unless i fiddled with the cochlear implant wire, i thought it was just my batteries playing up so i changed them and the cochlear implant switched on. The next morning,, it did it again despite new batteries, i fiddled again with the wire and it came on. But this day, after my bath, it wouldn't switch on so i decided to investigate!

I took my cochlear implant apart and found this....

a frayed wire!

no wonder it hadn't been switching straight on! Luckily i had a spare! :)

I got a new spare from the cochlear implant centre and send the frayed wire to them as instructed. Thank god for spars! :)

Don't worry...

I'm not gone... I've just been busy with my crafty things! The nerve centre has given me inspiration to paint and do lots more arty and crafty things! They also do exercise such as tai chi or games afternoons! I haven't been to tai chi or the games afternoons yet but im sure i will one day. They hope to get more people with neurological disorders to come to the nerve centre and to buy more art supplies and to pay for advertising because most people don't know they are there! it's a good place for neurological disorders to go to because they can get out of the house for a while and meet other people with same conditions. I've just been busy painting and all sorts..

The Newcastle visit to hospital is coming up soon so get that out the way! For now i'll nurse my sore throat that i caught off my dad! :P

Blackout...!

We had a power cut last night at 1 30am (dont ask why i was up late i should have been in bed!) I was in the bath room and everything just went black! Lucky I had my cochlear implant on at the time as it would have been a lot scarier without! I felt and followed brother's voice to his room where he gave me a torch!

Checked outside and all the street lights were out, only our street though.

It only lasted about 45 mins but im certainly glad i had my cochlear implant to rely on!

To my Mum...

Who has been through everything medical with me and been there through the HIGH and the lows of my cochlear and mitochondrial medical journey. She cheered me up when I was down and we laughed at the funny times. I'm very thankful she's there and I don't know what id do without her. So to show you how much you mean to me Mum I made this for you I hope you have a WONDERFUL Mothers Day! Love you lots! xxxxxxxx

Rare Disease Day...

One of my cochlear implanted friends, Vivie came across a blog that alerted her about rare disease day. which is 28th Feb. She told me about it since I have a rare disease too. Mitochondrial disease isn't necessarily rare but Multiple mitochondrial conditions are such as my condition Multiple Mitochondrial DNA deletions is rare and even rarer in my people my age. It switched off my hearing at the age of 8, I've never been able to move my eyeballs to look up, I have droopy eyelids and affects my swallowing resulting in using a button PEG. I may be able to eat some foods normally but I rely on the PEG to keep my weight up. It affects all my muscles by not giving them enough energy so I get tired more easily. Doctors aren't really sure how my Mitochondrial disease works therefore I go yearly tests such as blood tests and ECGs at Newcastle to monitor how it progresses as I get older.