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 Things getting better??

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PostSubject: Things getting better??   Thu Feb 10, 2011 6:02 pm

ok, so heres the new bit of my story.. i had an appointment with my eye clinic at my local hospital last week, i had my fields done and then saw my specialist..as far as they are now concerned i can go to see them once every 6 months as the swelling to my eyes has reduced..which is great news but i dont really know what to make of it as i still suffer the same as i have done from the begining :(

im still getting visual disturbances , headaches that have now gotten so bad all i can do is cry myself to sleep, wooshsing in my ears..you all know where im coming from

im hoping someone out there can shed some light as i dont see my neuro for a few weeks as my appointment had to be reschedualed

i really would be greatful

thank you
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PostSubject: Re: Things getting better??   Thu Feb 10, 2011 6:29 pm

Hi Jenn, there is evidence that you can still have symptoms of IIH and not have any swelling behind your eyes, so he shouldn't rule it out all together and it might be an option to see a Neurologist who would be able to do the tests required to diagnose IIH. Hope this helps.

INFO FROM THE IHRF WEBSITE ON THIS SUBJECT (http://www.ihrfoundation.org/)

Is it possible to have IH without papilledema?

While many physicians believe papilledema must be present in order to confirm an IH diagnosis, others argue that papilledema does not always have to be present. In some instances, a patient with intracranial hypertension may not show papilledema because of a time lag between the initial rise in cerebrospinal fluid (CSF) pressure and the development of papilledema. Therefore, at the time of diagnosis, papilledema is not seen.

Another theory is that the actual increase in CSF pressure may produce headache but is not high enough to produce papilledema.

Anatomy may also play a role. Variations in the micro-anatomy of the optic nerve can restrict CSF and prevent it from entering the optic nerve’s subarachnoid space. Or CSF pressure may be directed to a point of lesser resistance, such as the sella turcica (pituitary gland fossa) which then produces the appearance of an empty sella on imaging studies.

Other evidence of intracranial hypertension without papilledema is found in the fact that it’s possible to have asymmetric papilledema, in which the optic nerve swelling is either worse in one eye or only develops in one eye, rather than both.

To Learn More:
For more information on papilledema, please see:
Wraige E, Chandler C, Pohl KR. Idiopathic intracranial hypertension: is papilloedema inevitable? Arch Dis Child. 2002 Sep; 87(3):223-4.

Marcelis J, Silberstein SD. Idiopathic intracranial hypertension without papilledema.
Arch Neurol. 1991 Apr; 48(4):392-9.

Brazis PW, Lee AG. Elevated intracranial pressure and pseudotumor cerebri.
Curr Opin Ophthalmol. 1998 Dec; 9(6):27-32. Review.
To Read Past Features:
9/07 What exactly is an empty sella?

There is also this article; Idiopathic Intracranial Hypertension Without Papilledema

Last edited by Heidi on Fri Feb 11, 2011 8:59 pm; edited 1 time in total
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PostSubject: Re: Things getting better??   Thu Feb 10, 2011 7:32 pm

Hi Jen. I am new here but not new to IIH,Im afraid.

Like you, I am a bit in a no mans land.I dont know what do next, or what I am expected to do .

I have had IIh for over three years now, have a VP shunt , been on and off meds.
I met with my Ophth last week and came away even more confused and upset.Even tho she had good news for me.
It seems my paps have cleared in one eye and the other just behind it. I have waited so long for this to happen but she ended up making me feel like I was making up my syptoms.

In the end I just left.Today, tho, I went to see a local dr who has experience of IIh and shunts. She actually listened to me.
She explain that even tho they paps have cleared, you can still have vision problems. Most of the time , this can be put down to pressure but other times, they really dont know why. It was that simple she said. Not very satisfactory but at least it was the truth.

She felt that, because I still had trouble with my vision, that some damage must have been done to my optic nerve. This, she said, was permanent.
And, while the dr thought she was giving me some good news, at last I did nt really hear it that way.
She was trying to tell me, that nothing had got worse.To her that was good news. To me, well, I wanted better.
I wanted her to say I think,yes, it has not got better, but it is still hard for you.
My dr has put it down to poor communicating skills and I agree. The dr was being nice but did not explain . I asked to see my field vision test, which she said was fine. It would be the first time if it was, and I wanted to see it for myself, but she said no.
So, my dr suggested that I request a copy from her secretary and then we could both look at it and decide.

What is so hard about this illness is, we need answers and the drs, try as they will, do not have answers.
It must be hard for them, to look us in the eye and say, I cant help you.

Are not taking anything for the pain? Thats crazy, you poor girl. Can you not ask one of the drs to prescribe something to help?

I have had every optical illusion under the sun in the last 3 years! Want to compare notes? I do know a little bit about this, so may be I could help? If nothing else, I can give you a shoulder to cry on!
I do hope you are feeling better soon. Cath.
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PostSubject: Re: Things getting better??   Thu Feb 10, 2011 9:52 pm

thanks for all your help..im not looking forward to seeing my neuro as he seems to think i just dont understand and almost fobs me off at times with more pills.. im currently taking 1500mg of diamox (split over 3 doses thru the day) pain killers which simply dont help and some other pills at bedtime to help me sleep..

in comparison these fields iv had done last week are an improvement on the print outs but certainly not for me, what they see as good news is almost an insult to anyone suffering as they dont understand, i know they have extensive training in these things but its just not the same as living with this day in day out and i think thats where my frustrations lay..trying to explain it seems to get harder everytime

i think i just have to sit and wait for the appointment to see what he has to say, and hopefully have him understand
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