Diagnosis concerns
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gwen4dive
Community member Posts: 1 Listener
Follow the diagnosis in mid September 2011, I had decompression surgery in Jan 2012. At my 6 week check up I asked the surgeon if I had to declare that I had the diagnosis and the surgery? I was told that I had no reason to declare the Arnold Chiari as had been sorted with the decompression surgery.
I left the out patients dept more confused than ever.
Can anyone enlighten me to the right thing to do??
Thank you in advance
I left the out patients dept more confused than ever.
Can anyone enlighten me to the right thing to do??
Thank you in advance
Comments
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Hello @gwen4dive and a warm welcome to the community. I'm afraid a proper answer for you requires somebody with more knowledge than I have, but others will be in touch with you as soon as possible.
It might help if we could clarify things a little - and I must ask you to forgive me if I seem a bit dim about this - but can I ask to whom you would be thinking of 'declaring' your Chiari? Is this benefits related? From the little I've had time to read so far it appears that decompression surgery may or may not succeed in alleviating the problem, so is your condition still a problem for you (I'm assuming it is) and could you perhaps tell us a little more about how it affects you?
Here, listening and hoping we can be of help to you,
Richard
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Hi @gwen4dive
Good Day my Friend.
It’s Great to meet you today.
I have myself got a “brain malformation”
The only people that I have had to tell is:
1.Work if you are employed??
2. DWP for “Benefits” if you are “claiming” any ???
3.“DVLA” if you are driving still ?????
Those are the first things that come to mind.
You may find that the other members might add to these.
Many thanks
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Hi @gwen4dive, welcome to the community! Great to have you here.
This sounds like a complicated issue, and it certainly does make sense to have evidence that you have had the surgery. I wonder if it might be worth seeing a different medical professional involved in your care to see if they can clarify why this has happened? -
Hi Gwen
I am sorry to learn your concerns about the registration.
If I may, could I give my understanding of being on the registry.
As you have Arnold Chaiari, the medical team treating you have to put your details on "rare diseases register".
This is for use in medical research into rare medical conditions.
I believe this is for entirely good reasons and would not mind for my details to be held. -
Hi again
I should add if you do not want to be on the register, you can be taken off. Please contact The Rare Diseases Regitration Service.
Hope this helps.
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