Case study 144 | Idiopathic intracranial hypertension AKA Pseudotumor cerebri | Dr. Betsy Grunch
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- Опубликовано: 5 фев 2025
- Case study 144 - Idiopathic intracranial hypertension AKA Pseudotumor cerebri
September is IIH awareness month! A condition that occurs when pressure inside the skull increases for no obvious reason. Idiopathic intracranial hypertension is most common in obese women of childbearing age. Symptoms mimic a brain tumor, but no tumor is present. They may include headache behind the eyes, ringing in the ears in time with the heartbeat, and brief episodes of blindness. The first drug usually tried is a type of diuretic that may reduce the production of spinal fluid. Surgery may relieve pressure.
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#healthcareworker #hospital #surgery #neurosurgeon #medicalschool #medstudent #medicalstudent #nursing
#headache #migraine #iih #pseudotumor #pseudotumorcerebri #idiopathicintracranialhydrocephalus #hydrocephalus
Patient here: I had IIH (and other injuries) from a tramatic accident. Caused empty cella and vision issues. Yup. It causes weight gain because of the pitutary impact, the gain is a symptom. Weight loss is healing the pituitary through the gut. I was probably an extream case, I was gaining and losing about 20 lbs during my period, and gained about 20lbs overall during height of illness. It also causes leaky gut, confirmed by experience and you can look up journal articles. Healed with good vitamin doctor mostly a ton b12 injections and alpha lipoic acid, physical therapy for my neck and recieved stem cell treatments to treat cranio cervical instability diagnosed by digital motion x ray. Plus lots of other therapies... Getting over it without a stint, takes a long time. Can confirm Is very very painful condition.
If you have CCI it’s not idiopathic because the cause is the cervical area creating venous and CSF flow issues to flow and back up the toxins in the brain - hello brain fog to say the least. It also doesn’t affect the optic nerves like IIH does so it’s often missed too.
@@karenann7634 did you have it too? They thought I had a brain tumor at first, then just TBI and eventually I got diagnosed with CCI. So yeah I guess pseudotumor cerebri would be more appropriate label in my case. My optic nerve never got damaged that I know of but I still have double vision to some extent. Will do orthodontics eventually. My case was a bit extream because I also had a broken rib that caused a whole body muscle torsion. Wheee. Getting better. On year 6 Still working on it. I enjoy talking to other patients though, never met anyone else in person with it.
I was diagnosed with IIH 4 years ago. I have been searching for videos to learn more and have something to send to my family so that they can better understand my condition. I have had lots of appointments, CT, CTV, MRI, MRV and 3 LPs done. My last pressure was 32 opening last month. I have tried different meds, Acetazolamide was the worse. Now I'm on Zonisamide and Methazolamide. I am afraid to do surgery so for now they're trying the meds to see how I do. Anyways, This video is by far THE BEST!!! THANK YOU SO MUCH 💓
I watched your full video bc my sister is having increased headaches and was diagnosed with empty sella syndrome years ago. I've been encouraging her to get her eyes checked...I sent your full video and I hope this will maybe help her find some answers ❤❤
Thank you for sharing these videos! I am a Neuro nurse and sometimes I have a difficult time understanding why physicians order certain things because the reason behind is sometimes not explained. This is super helpful!
I’m an RN and I have this condition thank you for spreading awareness for it, it’s awful, and it’s misunderstood as well thank you!! :)
Me too. Trying to get my treatment just right ✅
I was diagnosed with IIH almost 2 years ago.
Thank you so much for spreading awareness ❤
I also have this disorder, for me it presented only in my right eye though. Very interesting information you gave on it, thank you.
Omgosh! I just love @ladyspinedoc . Incredibly intelligent and compassionate.
Thank you for sharing and spreading awareness.
Diagnosed in 05 VP shunt 19 years old no revisions!
Thank you for sharing. My daughter was diagnosed with this last year and they ended up putting a stent in her brain to relieve the pressure in her vein towards the back of her head.
I’ve had a terrible debilitating persistent headache at all times (24/24 and 7/7) for 8 years. At the beginning, I also had a blurry weird vision and went to an ophthalmologist who noticed nothing. Doctors found a Sjögren by chance at that time. I hadn’t noticed any dryness issue before that. I took Plaquenil for 1 year but nothing improved so I stopped. I had a whole day of eyes’ exams to check If Plaquenil damaged my eyes but they only found corkscrew veins in my eyes which nobody took seriously. I’m not obese, no papilladema but I have all the symptoms of iih. I recognize myself when I read the journeys from people with that condition.
I don’t know what to do. All doctors say I only have tension headaches when I feel it’s much stronger than that. I can’t get a Lombar puncture because my 2 MRI are normal (except empty sella). I tried all medication for headaches.
I’m sorry 😞
Thank you so very much for this!! I'm a patient, I have been diagnosed since 2015... Great explanation 🥰🫶🏾
How are you now....Are you on medication?
You are an amazing teacher .. I love how you explain things.
Thank you. This explains what is going on with me.❤❤
Interesting! It’s also Hydrocephalus Awareness Month as well! Shunts and ETVs are not a cure, but hopefully we can find a better treatment so repeated surgery is not needed. Signed someone who has had 16 brain surgeries 💙
I had a contrast CT, confirmed grade 4,5 paps and LP with an opening pressure in mid 40s. Remission 2 years after lower bmi (relative) bariatric surgery but today I found out it’s back. Dreading the devil diamox (acetazolamide) again. It works but the side effects are so painful for me that first 4-6 weeks. Constant pins and needles in face and hands feet.
Thank you for spreading awareness of IIH! I have it - in my case and others I had a venous stenosis and a cerebral stent has helped me - that was not mentioned in this video as surgical treatment - so, I'm out here spreading awareness for that! I also personally feel there is a hormonal component - a lot of us also have Empty Sella Syndrome that was mentioned I'm wondering since the pituitary gland is squished -that could affect hormones? More research needs to be done on the HPA axis in relation to IIH! And more research needs to be done on IIH in general!
Hi, I was diagnosed on 2020 and thought I was literally going to die. My symptoms finally got better once diagnosed but they are Storting to worsen. I’m up to 2000mg of medication a day and still suffering. My mom mention the stent and I got really upset and haven’t talked to her since. I’m just really scared and idk what to do. Can you tell me about the procedure and how you felt after?
@@Mani-period The best thing to do to see if you qualify for a stent is to get a good look at your veins and arteries with a MRV and you'll also need get a cerebral angiogram done and go from there. I feel like the stent is not as invasive of a surgery as a getting a shunt - however if you don't qualify for the stent you may need a shunt. My experience getting a stent wasn't too bad after a few day recovery it's been going well!
Are CTs without contrast sufficient? I have never been offered an MRI just used CT+ paps+ LP (lp only the initial dx 2019) . Trying to decide if I should pay out of pocket for a private MRI (Canada) to confirm it’s just IIH as new peripheral symptoms when relapsed after 2 years in remission.
Yes, this lovely diagnosis, I have been diagnosed with…. Thankfully I don’t have paps, but I have a high Csf issue. This is a mofo…. It can cause you to have a comorbid of Chiari, ( if you have Chiari you can’t have an lp ) empty sella etc. I am blessed my headaches are not my top issues, valsalva is horrific. It’s misdiagnosed for me as “ CRAZY LAZY DISEASE” ( that’s how I have been getting treated for way too many years )or at least that’s how I was labeled. My primary told me 15 yrs ago that I’m just getting old, that’s why my ears rings non stop ! I have had 2 ICP monitors but neither have told me a thing, I’m still waiting for my results…. 7 mos later…it’s just my life, who cares.. every day I live like this, I’m certainly never getting them back!
I’m sorry 😕
Are these all your cases? I would love for you to look at mine and spread awareness. I had a pulmonary avm that caused a brain abscess at 32 yo. Super random, but love seeing your case studies. I don’t think I’ve ever seen one done about a brain abscess from an avm!
Please be aware swelling behind the eye may not be seen in patients with “Elevated Intracranial Pressure” but there’s enough fluid to cause dizziness and headaches. Dr. Gerard Gianoli of the Ear and Balance Institute discusses the problem of too much pressure in the head which can be a source of vertigo, dizziness, pulsatile tinnitus (hearing your heartbeat in your ear), pressure in the ears, and headaches.
Did she have any bleeding in the eyes? If so she needs to have a comprehensive eye exam with peripheral vision mapping. She may have blind spots in her peripheral vision
I have this and VERY few people (even medical professionals) understand what I’m talking about and how hard it can be.
I’m sorry 😞
Yes I often get looks off people like I'm lying to them when I try to explain it including doctors
Isn’t it also true that having taken the depo shot can cause this? I have terrible pressure in my head sometimes - makes me feel like I’m being choked. Everything gets muffled sounding, floaters in my eyes, headaches, etc. My doctor mentioned maybe it’s PTC and that it could be due to the fact that I took the shot for so long and that there are so many lawsuits against Pfizer for it.
My pressure is 27. I am very symptomatic. I also have a perineural cyst. Any correlation?
I also never got a venogram of the totality of my brain, only the veins at the bottom of it, is it enough?
I am continuously amazed told there are NO BRAIN TUMOUR SYMPTOMS! What do you think are brain tumour symptoms?