Idiopathic intracranial hypertension

Hello @rrmoss, I would like to add my welcome along with @lisalucier and other members. Sometimes when I'm looking for medical research and treatments I will use Google Scholar (https://scholar.google.com/). I did a search on idiopathic intracranial hypertension treatment and was surprised that there was quite a bit of information available. I thought this article may be helpful but I'm not sure.

The Effect of Acetazolamide and Weight Loss on Intraocular Pressure in Idiopathic Intracranial Hypertension Patients.
-- https://europepmc.org/abstract/med/30624392

Hi, @rrmoss - how did things go with the neuro-ophthalmologist?

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😰

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.

Yes she did have severe headaches along with burning/ringing ears and stiff neck. She was also getting floaters and grey spots in her vision or if she sat down or got up/turned her head to fast she would lose vision for a quick second. After the first fenstration surgery her sight was getting better for about a week but that was still before the vp shunt was placed. Then it started going south so they recommended a 3 day high dose round of iv steroids and after that was finished her sight went dark and that’s when they decided it was serious enough for the shunt to placed. After the shunt went in she was released from the hospital and we went home. In almost a months time we had the follow up Lp to check opening pressure to see if the shunt was working and they found her opening pressure to be over 60cc like it was before. She was immediately admitted and was in surgery to have the shunt revised. Now 11 Lp’s later and we are steady at 15cc opening pressure without the diamox thank god. The neuro opthamologist said she does have paleness in her optic nerves but all the swelling is completely gone now. I’ve read so much on this disease now I feel like a specialist myself and I’ve also read so many stories with people of like nature or worse with total vision loss regain it in a years time but like I said I’m just scared that she won’t get it back. I feel completely helpless in the situation

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?

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?

The concerns of you and your wife are reasonable, @smoothasice86. Have you considered seeking out a specialist in this disorder? It might take a little research to find just the right medical professional, however, it might be worth a trip to see such a specialist in order to make sure your wife is getting appropriate treatment. Your mind needs to be put at ease regarding the future of this disorder.

Is she now being seen in a multi-disciplinary medical center?

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?

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.