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Author Topic: shocked, i have been refused Steroid treatment ---poor research!!!!.  (Read 1068 times)

Offline deevette

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I had my appointment with the consultant on Wednesday, i was well prepared, loads of research ( from Medline-Pubmed) about why I want steroids injected into my ear and why this is the least restrictive option for me.  To only be told that he thinks that all  research is just not good enough to prove that it is a valid treatment option for intractable MD.
 I tried very hard to argue that ablating ear seemed to me to be so final and not what i think i should have now. But he said he would not offer me anything other that Gent. For which i can have if or when i need it in the coming weeks/months /years.  I suppose i should be thankful of that.

He said that following ENG tests he was confident my good ear showed no signs of MD now, so it was as safe as it possibly could be to do it, But nothing is guaranteed.   He said i was well on the road to the end game and that he would just be bringing it forward for me. so if i went bilateral later in life the outcomes will be the same.  i did ask if any other doctor in Devon was doing steroids , he said he thought not , i asked about the research at imperial college, he said he was happy to put me forward for this, but said i could have gent, steroid or water and i would not know what that as it is a blind trial. He said when the trial is over he will take into account it findings but until then , he will only do Gent.
My lesson learnt from  my visit is not to have to many preconceived ideas before you see your consultant you may only be disappointed.

Offline Elaine

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Hi
Sorry you hit such a brick wall of a consultant and please don't stop finding out things for yourself.It is imo much better to be informed than to blindly go into treatments on the say so of the doc .Most decent MD docs will work with us so you probably need to find a better one .I've had that response about steroids in the past too and that's why I ended up taking oral steroids as opposed to having the injections then .There are some research papers where the trials used steroid injections and backed them up with oral steroids so they had no idea which bit had got things under control .You have nothing to lose from doing the trial except worsening MD if you are not given steroids or gent and are in the water control group .
Hope this helps ,
Elaine x

Offline dizdog

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Hi,
Just wanted to let you know that I had steroid treatment at Derriford, Plymouth under Mr Steven Toynton a number of years ago in case you might want to ask for a referral there - I'd  highly recommend him - in fact when I moved away from the area I did a 600 mile round trip so that he could  perform endolymphatic sac surgery.

Offline deevette

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Thanks Elaine and dizzydog  for your responses,  it is a real pain having such a dogmatic consultant. He just could not see any reason why  i would want to hang on to my ear or  any functioning i had left in  my ear. It seems bizarre, i still  some  balance and hearing working in that ear , i accept its a pain in the neck  to live with, but it is still my ear , maybe i just need to accept that  ' the end is nigh' and i have to say goodbye to it or  I may ask to be referred to Derriford.

Offline dizdog

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Poor you having a consultant like that - do ask to be referred to  someone with more knowledge and more manners - Mr Toynton is very approachable and very good and I recall him saying something along the lines of ' never do nothing - even if what you try doesn't work then at least you know to go to the next stage'. Best wishes