My mom was diagnosed in 2003 with idiopathic intracranial hypertension following several surgeries including Optic Nerve Sheath Fenestration and Bilateral Optic Nerve decompression in 2004. Her headaches have permanently gone but her vision loss still exists today. Other than the vision loss, she is perfectly active person but her day to day life has become miserable due to vision loss. This video gives me hope that she may see the world again (She can recognize bright light and shadows sometimes). Anything anyone can share with me I would so appreciate.
Watching while I'm fucked up for it... 🤣🤣 I was diagnosed with IIH 4years ago but we haven't that much to afford that expensive surgery.. now I'm just on my own... god bless you everyone... Last wrds: please don't take anything for granted ❤
I have had the condition for going on 2years I'm not too much overweight I'm 411 150 the medications did nothing I eneded up being forced to get a lumbar shunt but I still dont know what caused it 😟 I hope a clear understanding surfaces soon in starting to have so much pain with mine
Can you please help me, i’v been suffering for almost 3years. I take me steroids for almost 6months but after a year the swelling returned. I been done in my 2 MRI. but there is still no proper treatment.
Never been to a doctor but I’m sure I got this and I need to know how to treat it.. I can’t spend a day without thinking about my eyes… I used to have some of the others symptoms but They are not there any more
Weighed 365 3 years ago ; had gastric bypass, now 190, now IIH and empty Sella, was told before surgery my mobility would increase,things would become easier , isn't life ironic after all? Constant sub- occipital headache, constant neck ache, fine motor skills deterioration, I think my gait is worse, on waiting list for neurologist in our State Capital 😅. What more will life deal me? A Chiari 1 or similar?
In fact, he told me some of his patients pregnant is on diamox. But i do need to mention hes a high risk ob dr that deals with pregnant women with rare and different conditions
Hey I've been recently diagnosed with pseudotumor about 2 months ago. I've had two lumbar punctures my first lumbar puncture my spinal pressure was 29 this most recent one the spinal pressure was 38. Each time that they have done it they have drained at least half of the spinal fluid out to help relieve the headaches. My current Dr Is leading towards doing the shunt. All the risks that I've looked I'm honestly scared. I'm currently overweight I weigh 290 lb I've lost 10 lb since I've been diagnosed which has not really helped relieve the pressure. My question to you would it be better to have the bypass surgery done to lose weight or to do the shunt? I know losing weight will significantly really help with the pseudotumor but I'm also have polycystic ovary syndrome. So it makes it hard to lose weight when my body is working against me some of the research that I have done has said that they these two diseases may be linked have you done any research on that? I appreciate your time and hope that I get a response back. Thank you for this video also it was very helpful.
queenpin87able did you Ever get an answer? I was just diagnosed with pseudotumor today and I’m just starting to do the research on it so I can understand it more. What did you end up doing? And did it help? I’m scared of getting a shunt put in permanently if all I have to do is lose weight.
This is literally my life happening to someone else. I also have Pseudo-tumor Cerebri and PCOS. I am also 290lbs with no weight loss relief. I don't feel so alone now, thank you.
Sydnie Sommers hey! I just wanted to do a quick reply since your post is somewhat recent. I was diagnosed about 3.5 years ago and really was just managing it was diamox. Just this year I’ve lost about 65 pounds so far (still working to get more off) and it has seemed to help. My vision has stayed the same and I don’t get as frequent of headaches unless stress of something triggers it. My DR decreased my medication from 1000mg/day to 500mg/day. I don’t have PCOS but I do have hypothyroidism which can make weight loss a little slower/harder. This is just my experience but I hope you’re able to get some relief. :)
Did they try Diamox yet? They may help. I would personally get t the Shunt. I was 303 had a LP Shunt put in 2 years ago and put on Diamox. Lost almost 100 pounds NOW. Maybe talk about. The shunt surgery? Then if you. Need. To use Weight Loss surgery as your last resort. Diamox I thinks helps not only reduces brain fluid but helps weighloss. Best of luck.😊
relieving the raised intra cranial pressure is the top priority. It'll reduce the chances of visual loss and brain herniation. Negative MRV and absence of transverse venous sinus stenosis make reaching a diagnosis more difficult and warrant further imaging studies like contrast enhanced MRI to look for other probable causes. However to further diagnose and treat the cause, we need time. This VP shunt that your doctor advised buys us that time. Hope you get well soon. Take care.
I have IH and my advice I'm not a Doctor. Go to a Neuro eye Doctor and find a neurologist. They can run tests. Lumbar Puncture and MRI. Their is Diamox and Shunts that can help for more severe cases. Even Stents work really good now. Their really good IIH support groups here online. These 2 Doctors are right about traverse sinus stenosis. I have that. I had a LP and Angiography the same day. That's when I got my IH diagnosis. I dont recommend both in the same day. Both together take some time to heal from. I wish everyone luck and please know your not alone their is help .
@@lisacrumley4979 i have stenosis also of bilateral transverse in ctv but in mri my neurologist said i have brain sag which can be caused by csf leak he is leaning more on hypotension then increased intracranial hypertension which confused me more.
Hi everyone im from Australia my son has been diagnosed with this when he was 10 he was treated and was on diamox for a year everything seemed to be fine for 14 years and bang its back he is back on diamox but hates it he has also been given topiramate
