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I am 18 years old. I was diagnosed with a disease 9 months ago. I had a lumbar proton shunt implanted twice in a row because the first one broke and the second time the surgeon did not install it correctly. It also failed now. I am on treatment with diuretics and some stomach and glaucoma medications and headache medications such as Advil. I was infected with viral spinal fever twice because of the shunts. Now the surgeon. He is putting pressure on me to implant a third shunt because I started to lose my vision due to pressure on the optic nerve. I am a man and I am not obese. My weight is 65 and I do not have any other disease.

Don't forget you can ask any questions related to this talk and Nuala will answer them over the course of this week. She cannot answer any personal medical questions. IIH UK hopes you enjoy the talk and hearing about this IIH UK funded grant.

I would love answers to the questions: 1. Do you need to have severe or bilateral transverse sinus stenosis to be a candidate for the study? 2. Has it been shown if lowering of intercranial preasure (by other means then stents) makes transverse sinus stenosis improve? Will this be studied in the patients who receive a shunt?

I'll have to watch this later. Currently stuck without and meds due to them all causing kidney stones, and I lost 18% body weight in 1 year but no difference at all, so I gained it back due to depression and symptoms of IIH being a struggle, now I'm back on the grind and losing weight, 8.5 kilos 2 months but it feels so hopeless, it may never improve...

Don't forget to add any questions that you have for George in the comments here. Only questions related to the talk can be answered. Questions relating to individuals personal medical queries can not be answered. The comments will be monitored by Dr Tsermoulas and IIH UK for the rest of this week.

Iih can be present with out papilledema. Iih can be present after shunts and stents. Iih can be present when optical nerve swelling stops. Iih is present with normal weight people.

Is there any way you get get the stenting? My ventricles are narrowed, but nobody has mentioned this as a way of helping me since I got diagnosed - due to the first neuro I had only really seeming to care. IF someone can help point me towards the right place to get info would be grateful

No offence to the guy presenting, but why focus solely on weight? I'm sorry but that's annoyed me, whenever I've lost weight I've come out of remission, and there are many, many people who have it that are not obese in the slightest. Plus even if you don't have paps, you can still have symptoms.

Managing idiopathic intracranial hypertension in pregnancy: practical advice pn.bmj.com/content/22/4/295

Idiopathic intracranial hypertension: Evaluation of births and fertility through the Hospital Episode Statistics dataset obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.17241

Disease Course and Long-term Outcomes in Pregnant Women With Idiopathic Intracranial Hypertension n.neurology.org/content/100/15/e1598.long

I hope you upload more videos! I have IIH and it’s interesting that I found a channel dedicated to IIH. 😊 I wouldn’t wish this disease on anyone I truly hope I never have to have brain surgery…

Why are so many skinny patients having IIH as well.

Great presentation. Looking forward to hear about what is the current knowledge of IIH in men!

I’m 67 and have been on bio identical hormones for 7 years which included testosterone. I’m sad to say I now have IIH and FMD, (Fibromuscular Dysplasia) Both seem to have a possible hormone connection. The FMD is only problematic in my carotid arteries. I’ve stopped all bio identical hormones and wondering if IIH can be reversed. I don’t think there is much I can do about the FMD.

I have IIH and went total blind I just so happened to be able to see some THROUGH technology. I don't look it but I am and my doctor's told me I don't look a blind person. I remember when I got my first iphone I wanna say almost ten years ago I had to replace my phone almost every 3 months. If I would be on the phone talking my phone would get extremely hot I could be on it for long it went on for years tillll the day I went blind and was given a shunt. When I tell u my headaches would be extremely worse using my iPhone. I don't have headaches anymore and my phone no longer gets hot when im using it. Never told my doctor's this.....

Had my first lumber puncture today. Went from Grade 1 Pappillodemia to Grade 3 left, Grade 4 right in a month. Brain pressure was 39, got down to 12 by draining fluid. Right eye was going blind for 30 seconds whenever I woke up and opened my eyes, blindness symptom stopped immediately after this lumber puncture, but now still blurred lower peripheral vision. Hope will go back to normal.

Someone who's honest should consider a study putting patients on the ketogenic diet to control IIH.

What I want to know are the (possible) risks of anything going wrong getting the vaccine in a person IIH? Has there been or is there any issues with having iih and getting the vaccine?

In my experience my adipose was definitely changed when I got I’ll as I was never obese

Thank you 🙏🏻 amazing work

Great presentation :)

After years of Diamox , I needed a LP shunt, which worked so well I'm now in remission x thank you Mr Jack's x I started late too in my forties x

Such essential and amazing research! Thank you!

I have iih and im 14