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Idiopathic intracranial hypertension

Brain & Nervous System | Last Active: Nov 25, 2021 | Replies (29)

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@smoothasice86

Just wanted to put it out there that my wife and I are now approaching 5 months of her controlled CSF pressure after the VP Shunt revision. We have made no progression/regression in her sight. She still can only make out what I can only describe as seeing light with your eyelids closed. We will be seeing another specialist next Friday for yet another opinion on her vision loss. She continues to hold out hope that her sight will return and that does make me happy but being the realist that I am, I am beginning to lose hope that her sight will ever return. I believe her optic nerves suffered far more damage than the doctors are willing to tell us and when we ask them what their thoughts are on her vision returning I pretty much get shoulder shrugs and depressing looks of sadness/pity. The links I have been provided with on this site have been very informative but have only regurgitated information I have already researched. I am thankful for those who have provided the information for me to read over but again I feel like a car with no wheels trying to drive uphill. Thank you all for your time and efforts, it is appreciated. I will leave an update after we visit this specialist to share the information he gives us.

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Replies to "Just wanted to put it out there that my wife and I are now approaching 5..."

Hello @smoothasice86,

I agree with what, John, @johnbishop said about your supporting your wife with her vision problems. I am glad to hear that you will be seeing another specialist regarding this problem. A second opinion is always a good idea.

In addition to what John suggested about bringing a list of questions, I would also suggest that you read this discussion on tips on how to get off to the best start with a new specialist. Here is the link to that discussion.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
I recommend that you read through those posts and think about how you can approach this appointment in the most efficient way.

I appreciate that you will post again after your appointment. I look forward to hearing from you again!

@smoothasice86

Just thinking about your wife's vision problems and wondering how her appointment went with the specialist earlier this month. I hope that you both got some answers to your questions.

Will you post an update when you have the opportunity?

Hello @smoothasice86,

I noticed that it has been a while since you last posted. I hope your wife's vision is improving. Have you had any more helpful information from her doctors?