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 Scds, Recent update
hayley
Posted: Apr 11 2012, 02:31 PM


Member


Group: Members
Posts: 57
Member No.: 77
Joined: 13-August 11



Hi everyone how's things?.
I've not posted for along time so here goes..
After having the gentamicin I was really yucky for along time,my dropattacks didn't cease nor did the vertigo etc..My specialist wanted to do the saccus decompression but didn't know which ear,so he sent me for a ct scan with dye,little did I know what the findings would be..
I turned up to my next consultation which w high was the thirteenth of dec 11..
My consultant sat me down and said they has found something else,the fluid and dye was leaking into my brain via a hole in the semicircular canal,diagnosing me with scds,superior semicircular canal dehiscence syndrome.He has only seen two in his twenty five years experience and told me he was sending me to a Mr Simon Freeman at Manchester a neurosurgeon..I need a surgery to fix the hole..
I waited patiently for this consultation and was put through so many tests I didn't know whether I was coming or going..when the tests were over I went to see him,I explained all my symptoms even admitted I could here my eyeballs move amongst other internal noises,I told him I'm going crazy,he said,no your not your having an awful time and have had three years or more of this problem..
Do I have menieres was my next question..Yes bilateral Mr Izzat was right to treat me.
I have now gone through my preop yesterday and have the go ahead to fix the scds..
My consultant was honest with me and told me I had no balance function left in my right ear and that this surgery will disable the balance in my left ear..I was told not worry as I will be having vestibular therapy amongst other help which I will need,I also need hearing aids which will be sorted out for me when they know how much hearing I will lose in my left ear due to the surgery.He says I will never be able to pass a sobriety test sober..lol..but he promises me some improvements especially the internal noises and autophony..
Life has been extremely hard to deal with and I so can't wait to get the surgery which is scheduled for the 19 th of this month..
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Barbara
Posted: Apr 11 2012, 02:43 PM


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Group: Admin
Posts: 1,454
Member No.: 1
Joined: 5-February 11



Hi Hayley,
Thanks for posting this as it is something not often come across and we have a few people who have the pulsatile tinnitus which often accompanies this. Something else to be eliminated when approaching destructive surgical procedures.

Hope all goes well with the op and the VRT. I improved greatly after the labyrinthectomy with VRT but then I am not bilateral. I do however have a lazy eye which made me react as though bilateral and left me with oscillopsia. I do still have everyday problems but nothing anywhere near as bad as rotational vertigo and drop attacks.
I am sure you will not look back once this is done.

:mexican:

Barbara x
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Kath
Posted: Apr 11 2012, 06:26 PM


Senior Member


Group: Moderators
Posts: 441
Member No.: 8
Joined: 6-February 11



Hi Hayley,
Best of luck for your op. THis is going to sound weird but I was thinking about you only this afternoon. I'm going through a difficult time at the mo with my post gent recovery and I was thinking of those on here who have had gent and what their reactions were. I know the symptoms you have described in the past of your MD always sounded really awful, like in another league to what I've experienced frankly. I am really really pleased that they have come up with the root cause to what has been going with you after all these years and I so hope that you get some rest from it after this next stage. Best of luck for the 19th, do let us know how you get on,
Kathxx
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sharon
Posted: Apr 11 2012, 11:19 PM


Trusted Member


Group: Admin
Posts: 726
Member No.: 3
Joined: 6-February 11



Hi Hayley
Lovely to hear from you and thanks for the update.
I was only talking about you the other day to the other Kath (remember Desperate Housewife!?)
Her symptoms sound very similar to yours (including the drop attacks) and she's going to mention it when she next see's her cons.
Glad you've finally got your date and I wish you all the very best for your op on the 19th. I know you've really suffered for the past few years and you deserve to get your life back again.
Please keep in touch and let us know how you get on.
Take care
Sharon xx
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hayley
Posted: Apr 14 2012, 01:35 PM


Member


Group: Members
Posts: 57
Member No.: 77
Joined: 13-August 11



Thanks everyone,im so relieved they have now found out the real cause to these extreme symptoms,I really thought I was going doolally..lol.Scds is very similar to menieres as in the symptoms are so alike..I'm more relieved they can fix the dehiscence ( hole) in my semicircular canal,I have been told that it could deaden the hearing in that ear which has hearing loss anyway,and they have to disable my balance system too,I have no balance left in my right ear so I'm going to be more of a weeble wobble..lol
When my neurosurgeon told me I'd never pass a sobriety test sober,I had to laugh..I asked how does he know I have bilateral menieres and he confidently said,I have subsequent hearing in both ears and when they did the ct with the dye,they saw my edolymph sac was leaking fluid in my right ear,I'm still having drop attacks but because noise induces dizziness and I'm easily startled with noise he thinks my scds could trigger the attacks I'm having.
We are hoping once the surgery is over I can start retraining my balance and start a new journal on how I get .I am now going to be with this neurosurgeon for the foreseeable future as I have thinning of the bones on my right side and this may need repaired too.
I think of you all often and hope you are all getting some relief
Much luv,I will keep in touch and update you all how I get on, x x
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Barbara
Posted: Apr 14 2012, 02:07 PM


Administrator


Group: Admin
Posts: 1,454
Member No.: 1
Joined: 5-February 11



Hope all goes well on Thursday Hayley. We will be thinking of you with everything crossed.
Let us know how it goes when you are able but concentrate on your recovery thumbsup

Barbara x
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hayley
Posted: Apr 14 2012, 03:39 PM


Member


Group: Members
Posts: 57
Member No.: 77
Joined: 13-August 11



Thanks everyone,im so relieved they have now found out the real cause to these extreme symptoms,I really thought I was going doolally..lol.Scds is very similar to menieres as in the symptoms are so alike..I'm more relieved they can fix the dehiscence ( hole) in my semicircular canal,I have been told that it could deaden the hearing in that ear which has hearing loss anyway,and they have to disable my balance system too,I have no balance left in my right ear so I'm going to be more of a weeble wobble..lol
When my neurosurgeon told me I'd never pass a sobriety test sober,I had to laugh..I asked how does he know I have bilateral menieres and he confidently said,I have subsequent hearing in both ears and when they did the ct with the dye,they saw my edolymph sac was leaking fluid in my right ear,I'm still having drop attacks but because noise induces dizziness and I'm easily startled with noise he thinks my scds could trigger the attacks I'm having.
We are hoping once the surgery is over I can start retraining my balance and start a new journal on how I get .I am now going to be with this neurosurgeon for the foreseeable future as I have thinning of the bones on my right side and this may need repaired too.
I think of you all often and hope you are all getting some relief
Much luv,I will keep in touch and update you all how I get on, x x
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dizzybird
Posted: Apr 17 2012, 08:35 AM


Advanced Member


Group: Members
Posts: 87
Member No.: 5
Joined: 6-February 11



Hi Hayley

Just wanted to send my best wishes, hope things go really well and you make a speedy recovery and that all the horrible symptoms will soon be nothing but a distant memory.

Much love to you and your family.

Juliexx
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Barbara
Posted: Apr 18 2012, 10:01 AM


Administrator


Group: Admin
Posts: 1,454
Member No.: 1
Joined: 5-February 11



Hi Hayley,
I am sure everyone here will join me in wishing you well for tomorrow. I am sure you will be scared, who wouldn't be in your situation but you have a good surgeon whom you trust. Put yourself into his hands and all will be well.
Will be thinking of you.

Barbara x
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sharon
Posted: Apr 18 2012, 09:18 PM


Trusted Member


Group: Admin
Posts: 726
Member No.: 3
Joined: 6-February 11



Good luck Hayley.....will be thinking of you xxxx
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