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 TAKETH5TH

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TAKETHE5TH
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PostSubject: TAKETH5TH   Thu Sep 23, 2010 11:01 pm

My optician first alerted me that i had a problem with my eyes 18 months ago and sent me to my doctor straight away.I had seen him a few months before with a terible whoosing sound in my ears and feeling not quite in this world.
I was refered to an opthalmologist who told me i had enlarged blind spots and papilledema and after the ususal MRI and MRV scans was refered to a neuro.
It all added up then ... but it took almost a year for me to be officially diagnosed.Only had the first lumbar puncture in May this year.38 taken down to 20.
The process has been very slow i have been on Diamox 6 months and nothing has improoved. My neuro has said my next step is to have a shunt.I have refused as i have read up on all the extra problems they cause.

Good to meet some people that are going through the same thing .I have had nobody to talk to about it and because i look'normal' my family don't really understand that i am really concerned about loosing sight and that i am not my old self.So tired ....and confused.
My gp knows little about the condition in fact he has never had a patient with it so he is no help either.
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PostSubject: Re: TAKETH5TH   Fri Sep 24, 2010 1:03 am

I am so pleased you found your way to us, and joined our group. Unfortunately it seems that it's the Opticians who know more about this condition than our GP's do, and you would think that they would keep abreast of things like this, for when they may get someone who will show IIH symptoms.

What I suggest you do, and what I actually did myself, was print out information about IIH, the best place to get it being The IH Research Foundation

Insist on this being in your notes, so that should you have to see any other doctor the information is in there. I would also give copies to family and friends or point them in the direction of the IH Research Foundation online. The more information they have, the more they will begin to understand how it affects you, and the processes you have to go through with it.

I have to admit that at first I had refused to have a shunt, I was very put off by the complications and the surgery. I did do quite well on the Diamox for about 12 years, even managed remission for 5 of those years. I had lumbar punctures when the pressure was high.

I now have a VP shunt, and although they can be problematic, when they are working they do very well, and mine has been marvellous. I would say though, that if your eyes come under threat, having a shunt makes all the difference, so if they feel that is the case with you and a shunt is the best thing, unfortunately you may not have much of a choice.

If you would like to know what it's like having a shunt I'll be happy to talk to you about it and answer any questions I know you will have.

Heidi hug

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TAKETHE5TH
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PostSubject: Re: TAKETH5TH   Fri Sep 24, 2010 1:26 am

Thanks for your reply Heidi.
But i really have decided not to have a shunt at the moment i believe that a are other treatments to try it's just a matter of trying to get my Neuro to give me the nod.That is prooving difficult as he isn't interested in the new treatments as it's a matter of costs.I am getting together some info as i think 6 months on Diamox on a low dose is not giving it a proper chance.Shunt will be the very last resort.

I will take your advice on printing out the iih info for my GP.
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PostSubject: Re: TAKETH5TH   Fri Sep 24, 2010 1:31 am

I totally understand you wanting to avoid having a shunt unless you really have to once everything else has been exhausted, because that is exactly what I did. It could be that your dose of Diamox is like you say too low for you, and an increase of dosage might be all you need. It's a shame your Neuro isn't listening to you and considering your feelings on the way you want your IIH to be treated, you would think he would be exploring all possibilities for you. I hope he comes around for you in the future.
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