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Can my ONS have quit on me?

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#1 Sun, 22/07/2018 - 19:02
annieq13
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Last seen: 2 weeks 5 days ago
Joined: 22/07/2018 - 18:39

Can my ONS have quit on me?

Hi everyone,

I'm Annie - first CH when I was 12 and chronic when I was 19, I'm now 38. I was a member of OUCH years ago and looking through the posts I remember some names. I guess you could say I have the joy of being old skool Wink  

I had the ONS implanted in March 2011 and after waiting for a year for it to work it seemed the dream answer - oxygen aborted attacks for me, when it hadn't before and they started me back on topirimate and I got this glimpse of a quality of life I'd never dared to dream of. Fast forward three years ago and I had problems with the battery which had been in my stomach. I'm now sitting, 3 batteries later, with a resited battery which I have to charge every other day and am back on the high doses of oxycodone I was on before I had the ONS. It feels scarily like it isn't helping anymore. Has this happened to anyone? Has their CH changed like this?

any advice greatly received. Floundering a little. 

Tue, 24/07/2018 - 12:22
Val
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Last seen: 20 hours 25 min ago
Joined: 21/03/2012 - 15:16

I've not  come across another ONS patient who h as the problems you have.  I'd suggest you contact your neurosurgeon and report the problem asap.  You shouldn't need to charge up every other day.  I've had an ONS since 2008, and had a rechargeable battery implanted in 2012.  I had an effect right from the word go with my implant, cut down the number of attacks and the severity, but I still get 3 or 4 attacks a week, never know when, so I am still chronic, but at a point where life is good and a helluva lot better than it was pre-2008.  Where did you have your ONS done? 

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