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Author Topic: What to do ?  (Read 1328 times)

Offline mushy

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What to do ?
« on: Aug 30 2013, 10:19 AM »
Hi all  :)
Not been on here in a while,but i really need some advice.
I have been suffering with MD for 3 years now,diagnosed 2 years ago.

My consultant prescribed serc,eventually  upping the dose to 16mg three times per day but they didn't seem to help at all.He finally agreed to a gentamicin injection under general anesthetic (overnight stay) which i had in June 2012.
Since the op i am constantly unsteady on my feet,so much so that i struggle to walk more than 100mtrs as it makes me sooo tired having to concentrate to try and walk properly (even worse in the dark)
I am still having attacks (at least 2 per week) and although i have lost a lot of hearing in my left ear the sounds i can hear really hurt and make me instantly dizzy,things like car horns,alarms,dogs barking,even turning the washing machine on  :o
I have only had 3 appointments with the consultant since the op in June 2012 and when i tell him how things are i get the feeling he doesn't believe me.I have asked him if it would be possible to have the nerve section or even destructive surgery as i am struggling to cope but he says he wants to repeat the gentamicin op as there's a 50/50 chance it will develop in my right ear.When i explain that my left ear is more or less useless and only causes me problems he doesn't listen.


So my questions are.
Is it normal to STILL have these problems 14 months after the op ?
Do i complain about the lack of appointments or ask for a second opinion (how do i get a second opinion) ?

Sorry its a bit long winded  ::)

   















Offline allanander

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Re: What to do ?
« Reply #1 on: Aug 30 2013, 05:01 PM »
Hi Mushy,
I had 3 Gent injections. First one gave me about 10 good months, second gave me about 5 good months and third did nothing at all.  Was referred for Nerve Section and after seeing a different consultant who told me I had Uncompensated Labyrinthitis. I had been diagnosed with MD in 2006.  Consultant suggested best option was Labyrinthectomy despite me having useful hearing in ear concerned.  He said that Nerve Section is rarely done now as can be quite risky.  I would ask to see a different consultant if I was you. Don't let them just fob you off.  My first consultant was useless.  Hope you get sorted soon.
Allan

Offline judym

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Re: What to do ?
« Reply #2 on: Aug 30 2013, 07:26 PM »
You certainly deserve to be treated with respect/compassion when things are as bad as they are. How could anyone not take seriously the failure of an op - intended to make life better? 
As the current consultant seems unwilling to listen to you, it seems time to look elsewhere! It's not now the philosophy in the NHS to dictate to patients but to listen and communicate options. You don't have an absolute right to a second opinion - it all hinges on whether your GP is supportive. There's lots of info on the NHS website - suggesting that it's unlikely that a reasoned request would be turned down. The media are constantly on the lookout for stories of bad practice, nobody wants to be the doctor who ignores a patient!
Hang in there - I hope you get to see a really good consultant.

NEWOSA65

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Re: What to do ?
« Reply #3 on: Aug 30 2013, 11:10 PM »
If you're still having attacks 14 months after the gent surgery then chances are you need more gentamicin as the surgery has not completely destroyed your balance mechanism.  The best option would be the gent injections rather than the spongue op if thats what you had done 14 months ago?  A course of 3 consecutive intratympanic gent injections done every week or every other week may do the trick for you? 

Where are you located?

Hope things are sorted for you soon.

Simon

ps if the affected side is badly damaged ie poor hearing quality then maybe your best bet would be a surgical labyrinthectomy as it is safer than the VNS. However there has been plenty on this forum who have had the VNS and have had no problems.... i think it depends on who does the surgery for you!

Regarding the chances of going bilateral, yes this has to be considered when making decisions.  However if your life is messed up with this problem then perhaps something needs to be done now even if it means having destructive surgery?  I had the surgical laby and have never looked back... best wishes.

Offline mushy

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Re: What to do ?
« Reply #4 on: Aug 31 2013, 08:54 AM »
Thank you for all the advise guys  :)
I'm in Telford Shropshire and my consultants name is a Mr Scott,as i said,i am not too impressed with the care i am receiving.The last appointment was 25th June,the appointment  before that was in January !.
He apologized for the 6 month wait saying he had a lot of emergencies but 6 months....really ?

I hate complaining or causing a fuss,i keep telling myself "he's a consultant he knows what he is doing"
but i feel like i have just been left to get on with it by myself.I have been out of work since being "strongly advised" to take redundancy in April last year,to be fair once i was diagnosed they bent over backwards to try and find me a job i could do.


 
 

Offline Dizzy Hoon

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Re: What to do ?
« Reply #5 on: Sep 01 2013, 10:51 PM »
It sounds like you have not been listened to and been fobbed off by your consultant.  I would make a complaint through the hospital PALS (Patient and Liaison Service).  PALS deal with complaints, comments, compliments or can find answers to queries ie how to get a second opinion.  They will liaise with the ENT department.  I did this and asked for a second opinion, which I got in the same ENT department.  I believe you are within your rights to ask for a second opinion, whether this means within the same department or in another hospital I don't know but if you put this question to PALS they should be able to find out for you.

Offline mushy

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Re: What to do ?
« Reply #6 on: Sep 12 2013, 06:16 AM »
Cheers Dizzy  :)
I have finally managed to get hold of my consultants secretary yesterday,apparently im near the top of the waiting list and should be getting a date for the second gent injection soon.Fingers crossed i shouldn't need to complain or seek a second opinion 

Offline Carol Hunter

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Re: What to do ?
« Reply #7 on: Sep 15 2013, 06:51 PM »
Hi all,
I waited six months for a consultants appointment, three months for a second and a further three months for a third follow up. I'm desperate for something other than SERC. It's doing no good.

Work is becoming a big problem. I am no longer a reliable employee and will now have to work with my manager - who has been brilliant - on making 'reasonable adjustments' to my contract. I will probably opt to reduce my hours initially, but if I could, I would take three months off work to get some relief and proper rest. Not a reality as you all know!

I'm depressed and at a loss as to what to do.

 :-\

suzygirl

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Re: What to do ?
« Reply #8 on: Sep 16 2013, 08:38 AM »
Carol, you could phone the consultants secretary, explain the situation and ask for an urgent appt.  The secretary's are usually pretty helpful and understand when work is affected.                   

Take care