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Idiopathic intracranial hypertension
Brain & Nervous System | Last Active: Nov 25, 2021 | Replies (29)Comment receiving replies
please forgive my spelling, trying to find answers for my wife's condition. she was diagnosed in mid september of 2019 and very quickly lost her entire field of vision (a months time) she has since under went 2 nerve sheath fenstrations in each of her eyes and a vp shunt placement with a revision on the cathader in less than a months time. control of pressure was achieved on november 14 of 2019. since then she no longer is on 4000mg/ daily of diamox and is completely perscription free but we are still without vision. we have been told by the nuerosurgion that in a period of 9-12 months she would regain vision but i feel hopeless. she has random flashes of full vision here and there but mostly can only detect that a light is on or that she is out in the sun. i am looking for any kind of information or help to get her vision healthy again.
Replies to "please forgive my spelling, trying to find answers for my wife's condition. she was diagnosed in..."
I’m finding from the link you provided that a lot of the women diagnosed with this had suffered symptoms for what seems like years, just peaks my curiosity because hers all happened so very fast within a couple of months time. I feel like we caught it quickly but I also wonder with it seeming to have been so severe that the damage done to her optic nerves is going to leave her in the dark for the rest of her life. We had been trying to get pregnant for months prior to all of this and had no success and I began to wonder if it wasn’t me that had issues but when I mentioned that to the doctors they told me this is why we could not get pregnant and now she understandably doesn’t want to get pregnant until she can see again because it will break her heart not to be able to see our baby if we ever have one. The doctors have said we can now go for getting pregnant but she still doesn’t want too😰
Hi, @smoothasice86 - absolutely no worries about spelling. Medicine is full of spelling doozies, for sure.
I have moved your post here to an existing discussion on idiopathic intracranial hypertension so that you can connect with others here like @keza71 @oldkarl @aprillelain @rrmoss, who may have some perspective from their experiences on regaining vision after the treatments your wife has undergone. I'd also like to invite @johnbishop to join this discussion.
I applaud your research on behalf of your wife. That would definitely be alarming to lose all your vision in a month's time.
Are you feeling at this point that the 9-12 month timeframe the neurosurgeon gave for her regaining vision is not accurate? Have you gotten a second opinion on her situation from another doctor?
Hi @smoothasice86, I know 9 to 12 months can seem like an eternity but I would not give up hope. It sounds like the surgeries were successful and your wife no longer needs to take medication which I think is great. I'm not sure if you knew there is an Intercranial Hyptertension Research Foundation. It may be helpful to check the vision information on their website here:
https://ihrfoundation.org/hypertension/info/C68
Have you mentioned to the neurosurgeon that your wife has random flashes of full vision here and there?
Connect
Hello @smoothasice86 and welcome to Mayo Connect,
I can understand your concern for your wife and the return of her vision. It must be a frightening thing for your wife to lose her vision. I did a little research and found out that this is a rare condition. Here is a link to an article about it from the Rare Diseases website. Just click on the link and you can read more about this disorder. https://rarediseases.org/rare-diseases/idiopathic-intracranial-hypertension/
On Mayo Connect, there is another discussion on this topic. Just click on this link and you can see what other Members on Connect have posted regarding their experiences with this disorder.
https://connect.mayoclinic.org/discussion/idiopathic-intracranial-hypertension/?pg=1#comment-268012
If you care to share more, did your wife have other symptoms before she lost her vision, like headaches, etc?