Pseudotumor cerebri (idiopathic intracranial hypertension)
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- čas přidán 31. 05. 2024
- Brought to you by Dr. John Edwards, neurosurgeon at Summit Brain and Spine, as part of the Summit Medical Institute
This video discusses everything you need to know about pseudotumor cerebri also known as idiopathic intracranial hypertension. Including what it is, how it's diagnosed, what you can do about it, and how to treat it.
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0:00 intro
0:09 overview
0:30 what is it
1:15 how is it diagnosed
2:03 what you should do
3:04 treatment
4:51 summary
My name is Steven when I was 19 I was diagnosed with pseudotumor it took the doctors a year to figure out what was wrong with me. I went a year with crippling headaches and vision loss a horrible wooshing noise in my right ear. It wasn’t until I was on the verge of going blind. The doctors did a spinal tap with my opening pressure was extremely high from 19 to 24 every month I was getting a spinal tap on a monthly basis plus medication’s and pain medication‘s after a while, my symptoms kind of just subsided and went away everything except for that washing noise in my ear from 19 till 32. I lived with that washing noise in my right ear. I kind of just thought it was something I was just gonna have to live with wasn’t until three months ago I started experiencing symptoms again And I was referred to a neurosurgeon that told me about a stent. He did an MRI and an angiogram, and it showed my right venous vein was extremely narrow so I went ahead and got the surgery and the noise is now gone. I only had the surgery last week and I’m feeling better still feel a little weird thing. My body just has to readjust back to normal, but it took 12 years to get rid of that noise. And hopefully put a end to this horrible disease This disease needs more awareness. There’s people out there that suffer from this disease it’s a shy 12 years ago. They didn’t really know what to do about it. Thank God today they have more treatments for it if anyone has pseudotumor. If you want you can contact me I’ll be more than happy to answer any questions you have.
They told me to lose weight
@@bbbaby8557 it’s not always waight that’s the problem in some cases it is but in most cases it’s not if you have the pulsating tendinitis. It’s most likely not your weight that’s the problem.
Sir I have very heavy head pressure top of my head is this also the sign of iih
Hi. Are you able to fly on a plane?
@@mariaaastarr3032 yes
Sorry, but a CT scan if a doctor doesn’t know what to look for they’ll miss it. Best way to diagnosis is look at the optic nerves than an MRI of course.
Thank you for this video. I have had this condition my entire life- as far back as I can remember I had ringing in the ears, and pulseil pain, aching of my head for years while being underweight. I was diagnosed during my first pregnancy with extreme vomiting and headaches and visual disturbances. I believe the weight gain comes from the headaches, intolerance to jarring of the brain and endocrine malfunction due to the empty sella syndrome which smashes the pituitary and hypothalamus glands responsible for normal endocrine functioning, due to the pressure inside the brain. It's smashing everything inside the brain, including the olfactory nerve the optic nerves and puts a lot of downward pressure on the neck as it pushes the contents of the brain down and out of the brain. This is a woman's disease, and once it disrupts these glands that are responsible for weight control, the hormones are radically disrupted, causing weight gain. The weight gain is caused by the disease not the other way around. It also causes extreme thirst, which drives people to drink more fluids. Increasing electrolyte consumption has helped reduce headaches. Polydipsia and polyuria are highly related to this disease so I do agree with you it is an imbalance in fluid production and absorption along with electrolyte retention.
i have it too everything you said even the itching i lost 85 pound and i still have the problem it just got little better i dont know what else to do so stressfulllll
Thought you might mention stent surgery as a treatment but, once again like most Dr's the focus is more on weight loss - of course a stent is only for those that qualify - like I did - I can speak from my experience that getting a cerebral stent helped me a lot and I think more Dr's should look into this a treatment!
Absolutely...its so frustrating they think weight loss is a cure...its a SYMPTOM not a CAUSE of iih! We have empty sella and it causes hormone issues, let alone most of us also have pcos or endometriosis....and most of us we have children....so of course lots of us have extra weight...let alone birth control and meds drs put us on!!
..they need to research more so they can understand iih better. Its so frustrating...instead of drs having just have a 2 day course on iih
I just got my stent
Get the stent if you have the wooshing noise in your ear then you have stenosis even if your iih symptoms subside the stenosis the narrowing venous vein will get more narrow as time goes on and give you issues again
How does the stent work? What’s the actual procedure and recovery etc
@@blessing6096 You 1st have an angiogram done to make sure you qualify for the stent then they go in through an artery (mine was through the groin/leg) and put the stent in - the stent opens up the vein if you have a major stenosis - For more info. look up cerebral stent procedure /for IIH
I was diagnosed with this I take acetazolamide now.
I have been taking 10000 IU vitamin D woth creatine monohydrate and multivitamins for 3 days. And now I have awful headaches. I guess I found the answer.
Hi ..do u think iih can be due to intake of multivitamins..i have headaches too nd i take multivitamins..
What are long term effects of this. No optic nerve swelling.
Could the blockage be because of the mislocated atlas vertebra?
What about swelling in the face, the eyebrow region with headaches?
I hate how they think Its about weight loss. Multiple people with this condition are not over weight. This makes me so sad. Living with Iih is one of the hardest things.
Most women are overweight
They don’t think it’s just about weight loss but they try to connect with as many people as possible at one time and the majority of cases involve weight and weight loss.
thats what the doctor told me is because the overweight
Losing weight decreases the pressure in some people and relieves a lot of pain. Not the case for everyone, but very common.
Sir i am sufering from iip now the pressure was above 30 diamox started afterthat headache subsided my wt is 69 hight is 154 not toomuch faty but i have another problom for 5 years idiopathic sodium intolarance ( sodium retention ) i can not take any salty food blood pressure shoot up so not taking any food with added salt. If am palning for vp shunt may be it will block with high sodium. Before urine sodium was low. But if i took any salty food even no added salt also in my throat salty mucus is coming that time i will gargle with pure water long time. Even my tears is sometime dry i can see particles of salt. My body is not a sweting body so no chance to remove sodium
If like that is it posible to try vp shunt
Thank you for your comment. That sounds like a reasonable thing to consider and I encourage you to speak directly with your healthcare provider about your concerns.
When would you revomend a vp shunt?
The main reason a shunt is done is to preserve vision- as opposed to improving headaches, which is just an added bonus. I’m getting my shunt on Monday, 7/17, due to vision loss. Three of my four kids have this condition and are shunted, as well- also for prolonged papilledema, swelling of the optic nerves, with vision loss. Serial LPs used to be the go to, but now most neuros don’t like to do them too often because of their long term risks- including tumors. That would be another indication for a shunt.
I'm on the Facebook group for pseudotumor cerebri hopefully every woman on their is not overweight at all.
To my understanding heavy weight is most common in females
Is it the pressure in the head in particular ?
Usually in the back. Around the base of the skull, in my experience.
It’s not a condition it’s a disease
Were you taking any medications that caused this?
I’m bout to lose weight fuck that