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Dave H

Dave H

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PostSubject: Just Diagnoesd   Just Diagnoesd I_icon_minitimeThu Sep 15, 2016 11:11 am

Hi Guys,

My name is Dave, im 39 from Leyland, Lancashire.

I was diagnosed about 6 weeks ago, first of all my optician found the pappiledema and sent me to hospital, i had a CT scan and i LP which had an opening count 0f 42

About a week after my LP i was so ill that i was admitted for 5 days and started on Diamox. 

Whist in hospital they also did an MRI and said i had Stenosis of the transverse sinuses.

TheDiamox worked great for a couple of weeks, my symptoms, apart from my visual problem went away, after a couple of weeks however my symptoms have slowly come back.

I had 10 weeks off work but went back yesterday. Im a travel consultant and work on a computer 8 hours a day 5 days a week, i managed 4 hours on my first day and had to go home to bed. I so badly want to do the job i love but in my heart i feel that its not going to work. I'm very long sighted and have a very high perscription, my vision without my glasses is terrible, dont get me wrong it always been bad however over the last year the deterioration is massive.

I have my clinic appointment on the 1st October so hopefully i can get my dose increased.

This has hit me like a bus, outside my close family nobody is able to grasp what is wrong with me which is frustrating.

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PostSubject: Re: Just Diagnoesd   Just Diagnoesd I_icon_minitimeThu Sep 15, 2016 6:17 pm

Hi Dave! I'm sorry to hear you're struggling, but it sounds like you're on the right track. It can be a long and frustrating process, but we'll help you through it as best we can.

Stenosis is the narrowing of the transverse sinus and can cause IIH, so I wonder if your appointment scheduled on the 1st is to discuss a stent? It's my understanding that medication is usually just a short term solution for stenosis, but I would definitely discuss possibility of increasing Diamox as well as benefits of stent. The good news is that your vision can improve with treatment, if IIH is the cause.

Hang in there, and let us know if you have any further questions!

Take care,
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