Oh Jazzy I am so sorry to hear that.
Have they considered giving you meds to see if that will pull the fluid off and maybe it wont come back but if it does maybe you could take a low dose to supplement your shunt until they can figure something out. I did that while my ventricle was collapsed.
Good Luck,
Beth

Jazzy,
All this time I was thinking ...no news is good news. I was so hoping you were set for life and your shunt was doing its job. I have never heard of fish oil causing optic nerve swelling. In fact, my son takes it a lot! I hope somehow this will resolve without you needing more surgery!

my heart feels heavy, we are both going through the same thing... sometimes I feel so alone, and it feels good to know that other people are going through this too.
I wonder sometimes, when will I have my old life back? Other times, I can see that the painfree, carefree, outgoing person that WAS me... doesn't even exist anymore.
I like solutions, problems=solutions
Why is there no solution, here?
Just more questions...
I doubt I'm helping, so I really feel for you and I hope we both feel better

Jazzy! At first I was delighted to see you back but oh such a heavy heart now.
This dreadful illness really takes it out of you. You can no longer call eh future yours.

Ok, now a bit of my story, might make you feel a bit less upset.
When I was first diagnosed in Sept 08, I had very bad paps and had lost a lot of vision. Tried the meds, didn't work so my NS persuaded me to get a shunt, VP, before it was too late as my ventricles were so small already. Got it in Nov 08.
From day 10, it has done very little to improve my symptoms, including my paps.

Fast forward a year, my neuro takes me off all meds to see what will happen and the Diomax is giving even worse symptoms.
Still have paps.
Then , this Jan, for no good reason, my paps in my left eye got better, right almost. I also got back a lot of my vision, but not my peripheral. But I put this down to the long time I went undiagnosed.
And, now? They are still the same, 8 months later.

So, don't give up hope, things can and do change. I feel that the eye will heal its self in its own good time.

I honestly cant see how fish oil could be the culprit. The only reason I believe is, high pressure will cause paps.

Lets put it out there, to the people who have had the fenestration surgery. Is it a good move for Jazzy?
I can understand how upset you are but just go slowly with us for a few days.
Lets see if we can pool our thoughts and experience together.
Have you read Paula's( IIH suffer) notes ? from the IIH conference? They are brilliant!

I'm am sorry to see you return with your hopes dashed. Hold tight, maybe we can help. Don't lose the faith . Cath.

Hi Jazzy,

This can surely be a love hate relationship. Love to hear from you again but hate that it is because you are having trouble.

Wish you the best resolving it this time around. I know you have been through it all before. Keep your chin up!

TJ

Hi Bat, thanks for responding. unfort. I can't tolerate the meds that take the extra fluid off, I've even gone on the lowest dose and got so sick. I wish there were more options for meds that didn't give me such bad side effects. I'm drinking caffiene but I don't notice much difference. This is such a frustrating disease. Hope you are well.

Hi high5Mom
Yes, weird, I guess because of the vit A in fish oil. It seems like a stretch but maybe it triggered whatever mechanism that causes my IH. I was so happy since I was able to return full time to work, and now this, blah. I guess I just have to take it a day at a time. I don't want to lose my job but not sure how to prevent that from happening.

Hi Posie, thank you for listening and your empathy. To have finally gotten this under control with a shunt that works and now to deal with this all over. It is frustrating and lonely since it is hard for people to understand how I can be in so much pain and yet "not look sick". It is esp hard, like you said, because there is no one true solution. I was reading on the IHR website how frustrating it is for people and Dr's since everyone can display diff. symptoms. I'm so glad at least this support group is here. Hope you are feeling better.

Hi Kath, I'm glad you are doing better. Before this happened, my last visual perceptual field test was perfect (6 months ago). My NS told me that the fenstration would help my headaches but I read that is doesn't. I would only do it if perm. damage started again on my optic nerves. Yeah, he was trying to think what caused the high pressure and I started taking fish oil pills about a month ago when my symptoms started coming back. Another NS I talked to didn't think that would do it. They really should tell you things like this that can trigger new episodes. Thanks for your encouragement, I just and floored that it returned after everything I've been through.

Hi TJ,
glad you are doing well. I've kept my chin up so long that I am an expert in "chin ups", lol.

Just to let you know, something I heard at the conference is that until last year, there were no programmable LP shunts. The first one was made just last year by Medtronic. It's called the Strata shunt. I spoke with the rep (who has been working with shunts for 25 years) that this is the first one to come out ever specifically for the LP region. She said that many surgeons were using the VP shunts in the lumbar area which they should not be doing since they won't work the correct way. I don't know how true that is, but it may be worth looking into. Maybe the LP programmable shunt would work better for you. Best of luck.

Hi KP, thanks for replying. Right now I have the stratus II unitized shunt/valve. My NO said the company just put out a new one and he is going to check with the vendor to see if it has more position options. Don't know what I will do if it doesn't have any more play with the control of output flow. Thanks again for your help!