Title: Finally Found You!!
pint - October 17, 2011 10:12 AM (GMT)
finally found the new forum!! The old forum scrubbed the link that someone kindly PM'd me - but I managed to find you in the end!!
Hi to all!! :D
I am Matt, 35, Menierres since 18 (unilateral). Terrible time from 28-33/34 with complete disability....things got pretty bad at some points, didnt know if I could carry on.
But, after all the other ops, meds, treatments tests etc I found my wonderful consultant and finally got Intratympanic Gentamicin - which,after several treatments and almost a year of recovery- has given me my life back.
I am back at work, I can drive, I can play with my kids, and actually went on holiday (twice) this year. First time I have ever been able to go on the waterslides and the diving boards with my son!!
Anyway - still have very low volume tinnitus and still find it easier to look at the floor than the horizon when I walk, but I am so used to it I barely notice. Dont think anything of walking to the local shops for the milk or papers!!
So this is a hello and a reminder that there is always hope!!! It has robbed me of my 20s, my 30s, my childrens childhood- but, I am making up for it now!! Took my long suffering wife to New York City (found times square a bit much after about an hour or so, but other than that I managed the whole thing - including the statton island ferry round the statue of liberty which I was terrified to try, but actually had no trouble with!!).
Please keep your hope. You are all so brave. I am grateful every day for every little thing, but I know exactly how it feels to be at the mercy of this awful, horrible disease.
Only advice - get a good consultant who listens!!! Tell them and DONT STOP telling them, until you get what you need....and think in years not in days.....I always expected to feel better a week after an op - it has actulaly taken a year of intensive physio, challenging excersizes and putting myself through experiences which challenged me repeatedly every day!!!
Good luck all you brave souls....I wish you all equilibrium!!
:clap: :clap: :clap: :clap: :clap:
Barbara - October 17, 2011 10:45 AM (GMT)
So pleased you have found us and even more pleased to hear about how well you are doing. It is important for us to be a place where people can write about their success stories as well as a place to come for advice.
You sound to be doing really well and that is so, so encouraging for those who are having a rough phase. :clap:
Please, keep us updated on your progress. Long may it continue and welcome to the fold. :mexican:
sharon - October 17, 2011 12:53 PM (GMT)
Hi Matt I remember you. ( I was Purdy back on the dark side!!)
So pleased to hear you are doing so well. I know you were having a terrible time of it for a long while so it must feel wonderful to get your life back on track.
I'm so jealous of the New York trip. My husband had promised to take me for my 50th a couple of years ago, but I just wasn't up to it. (and he hasn't offered again since :D )
I wasn't getting anywhere with my consultant so decided to give the hospitals a miss for the time being... but it's encouraging to hear you managed to find a good one.
Onwards and upwards for you now.....hope you make the most of any opportunity that comes your way and you'll stick around now you've found us again.
Kath - October 18, 2011 09:04 PM (GMT)
Hi matt, glad you managed to find us again. I remember you too. Funny the things that you remember, i remember you telling us how you were getting back to riding your bike after a bad phase in your MD. You were cycling to work?
Glad that the gent has done the trick. I am also someone who has benefitted from this treatment. Next week is the 2 year anniversary of my gentamicin treatment. Still vertigo attack free (touches wood) although it never leaves you in other ways.
hope you continue in your recovery,
all the best
juliep - November 25, 2011 10:08 PM (GMT)
Hi Matt, I just joined this forum, and am reading thru and trying to find my way around. I had to comment on yours, because it was actually an inspiration, and giving me some hope!!!! I am so happy for you, I know the feeling, and I want that feeling back.
I have unilateral Menieres for last 6 years (I posted this on the newsite site). You can go read it if you want, so I wont have to repeat. Anyway, am having a flare up, and theres no way I can wait for a whole year to get something done. I am already signed up to go to University of Michigan (research hospital), top rated, and get a second opinion to see if something other than: Steroid boosts, Dyzaide, try to watch my salt, but always kinda hard. Stopped caffeine, but I'm having a flare up that is lasting on 3rd week now, but about 3 dizzy spells within. I have heard of the injections, and I did receive one about 3 years ago from my ENT Must of worked, I really can't remember. Just finished a steroid boost, and that did NOTHING, have a headache with it also.
Anyway, I'm now scared to do anything, for fear of having one. Tomorrow I am taking my grandson to a Xmas cookie party with my daughter in law, then I was asked to babysit him while they go out for dinner. That's is fine, I'm always happy to help, but I want to make sure my husband is home, for security. I don't want to have to be worried like this. It's only been going on (the flare up), for 2 l/2 weeks, I've been good for 6 years!!!
Anyway, thank you for your positive, inspirational post. It helped me.