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Thanks for the explanation Doc, i keep insist my doctor to install stent because i have venous stenosis and IIH.. you answered my questions

love this video

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Bless your heart , I just got diagnosed with this this past mobday

I just got my diagnoses monday i alresfy feel my heads gobna pop i pass out and much more cantveat , neckbfeels like gonna pop a valve lol Its scarey but now i know

What a new treatment please tell me als mnd IAM young girl moon from Quetta Pakistan

Can you please do a video about transverse sinus high-grade stenosis sigmoid junction?

I had the flashes of light when I was unmedicated. It was like a tiny fireworks show. Terrifying

Dear Nicole, Thank you for sharing all you shared, it's so very helpful and empowering. Being a patient in our current health system is incredibly frustrating and so very time consuming, adding to the stress of being ill. I wish you great success with your surgery, I hope and pray that you will experience wellness and thrive joyfully, through your life.

Thank you very much

Excellent information. So glad to hear there will be a directory of physicians specializing in IIH treatment! Wonderful. It will be an enormous help to those afflicted by IIH.

The key for a really good outcome is finding the best doctors. My local ophthalmologists and neurologists are not up to speed at all on IIH and proper diagnosis and treatment. Mayo Clinic (Rochester MN) helped turn things around for me, Dr. John Chen (ophthalmologist), Dr. Mark Whealy (neurologist) and Dr. Waleed Brinjikji (interventional radiologist) worked together quickly and saved my vision and restored my overall health with venous sinus stents. My intracranial pressure is a little bit higher than normal which results in some vision disturbances and head pain, but it’s intermittent and the optic nerves are not affected. Don’t waste time with doctors who are stuck on believing every IIH patient can be helped with medication and rapid weight loss. When the optic nerves have swelling, it can cause permanent vision loss, not to mention how debilitating IIH can be. Don’t wait, get help from specialists who have experience in treating IIH with up to date options.

Thank you Lord for answered prayers Amen

We need to talk.

I lost 140 pounds and my IIH was getting worse. I have been on Diomox for over ten years, and is sang.-

I have had very high CSF for years at 46-32 pressures. I have had eleven spinal taps. My last one was done over two years ago. I have right sided weakness and the tenitis is worse as well as blurry vision. I’m in my late 40’s and I was a neuroscience major in college. I read in the New England Journal of Medicine that Diomox is not as effective over time. I am noticing I have extreme nerve pain and swelling at the hands and feet as the tenitis worsens. I do agree that upstream stenosis can be an issue. My uncle, Dr. Ninan Mathew, a renoun neurologist always said that shunts should be the last option. I have never been on Plavix. My husband is a physician and we have had patients with IIH in our private practice. I have never had a veno-gram. I don’t like LPs, and I don’t believe in lumbar drains. Patients, like myself, run the risk of meningitis each time an LP is done. I like your approach of establishing the blueprint to do a preliminary issue before an LP is wonderful. I feel these LPs are just putting a small bandaid on a growing problem that doesn’t go away. I was diagnosed in 2013, and I am not sure how long I have to take diomox to manage my CSF. I am very dizzy, blurry vision, one sided weakness, tenitis of the right ear only, and laying down is better on my right side is better than sitting. I don’t want to redo a procedure or have a risk of infection. How invasive is placing a stent? 5/40! I will let my neurologist know- Dr. Restrepo(San Antonio, TX) I would like to know recovery time and risks.

This is the best description and explanation of my IIH. My condition is getting worse without any real follow up. Thank you 🙏🏼

Si possible en français svp

I got PT from a negligent Sublocade injection in My Navel...it hit my blood stream and caused narrowing in my Brian blood vessel.

I have IIH. ABSOLUTELY NOTHING HAS BEEN DONE IN YEARS TO FURTHER THIS. 😢 no help, nothing . I had to fire all my doctors. You said just headaches. Wweell until you tell me you yourself can live any kind of a life with an untitled headache that’s worse than a migraine. It’s NOT A MIGRAINE.. IT NEEDS IT’s own title and name PERIOD. INSURANCE Companies deny medications,deny treatment. Hey don’t you make a small gauge to keep track of my spinal fluid levels? There’s a much better way. I have SUFFERED HORRIBLY BAD BAD PAIN 6 spinal taps. I am allergic to the medications given.. I don’t take pain meds either because they are harmful and addictive. I. Have had this BRAIN CRUSHING HEADACHE FOR A STRAIGHT YEAR. YES A YEAR 24/7 . Can any of you speak on that please. 😢 I’m in Utah and very disappointed in this field of medicine . Since they label this headache as a migraine headache it will never get the attention and PROPER TREATMENT FOR THIS. I HAVE NO ANSWERS AND GIVEN NO HOPE. THIS IS UNACCEPTABLE AND UNBELIEVABLE THAT YEARS GO BY AND NOTHING NEW. 😢

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Can you treat me please. So hard to get treated. I'm suffering and being shuffled. We suffer

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Thank you for sharing your story!! The diagnosis process was traumatic on so many levels.

Recommendations for GOOD IIH providers at Mayo Clinic Rochester: Dr. Mark Whealy/Neurologist Dr. John Chen/Ophthalmologist Dr. Waleed Brinjikji/interventional neuroradiologist (venous sinus stenting)

So sad to see people continue having to go through this misery and have so many hurdles to overcome when it comes to finding capable providers. I hope whoever gets a CT or MRI gets a CT venogram or MRV instead and has someone that is well able to read the scans to determine whether venous sinus stenosis is present. I had grade 3 papilledema that was only worsening with treatment and time. By my own research and persistence I found out about venous sinus stenting (I had a lumbar shunt placed 30 years ago that had to be removed after a burst appendicitis last year). I didn’t want another shunt. Through Mayo Clinic-Rochester, I’ve received two venous sinus stents which saved my vision and health. Weaning off of DOPE-amax, hallelujah! Shunting is not simple, it has a very high complication rate. Stenting has a risk, but very rare and with less complications. I’m very glad, so far, to have gone this route.

Very helpful as someone recently diagnosed. Thank you.

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Note to the doctors: As a patient (55 yo female who lost her 30 year old lpn shunt due to a burst appendicitis incident and bad advice from a neurosurgeon last year) who had the first venous sinus angiogram and stent procedure under conscious sedation and a second one done under general anesthesia, I hope the norm for these combo procedures will become general anesthesia. I had a horrid experience with conscious sedation where the pain was not managed, I was alert much of the time and the procedure went far longer than expected (2+ hours). I was given general for the second stent procedure since the conscious sedation scenario wasn’t “well tolerated.” Please take into consideration that having something traveling around inside your head is not only an unsettling experience when you’re too conscious, it can be painful and the stenting can be beyond painful. Imagine something scraping the inside of your head and when the stent is deployed, the feeling of something ripping inside your brain. Not something you should want a patient to go through if not absolutely necessary. I had wonderful results from the both transverse venous sinus stents which saved my optic nerves and restored much of my vision and health. I’d preferred to have skipped the traumatic experience that conscious sedation has left etched in my memory. Thanks for contributing to this educational channel! IIH Hub is a fantastic resource for anyone with this affliction.

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I have all these findings but no papilladema.

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I’m an actual patient with I.I.H. IVE FOUND NO HOPE AS OF YET IN THIS FIELD. I’m in Saratoga springs Utah. I’m very upset that after all these years there still show no solution. Why does my body make too much csf? Is there something wrong with the absorption of it? If so what’s being done in the field for that? That is the simple solution I think to know this would you then be capable of fixing that? Is there anybody out there in this world that can answer that? I feel I’ve been set up for failure at every turn here. It’s just unacceptable to me to allow a lady to remain in severe pain 24/7 and think it’s ok. I’ve had 6 lumbar punctures in 6 months. Relief of a lot of pain for a few days in between. Not once have I had 100% relief. I won’t take the diuretics due to the fact they caused my body harm from the rare side effects. I don’t take the pain medication because it’s addictive and only before the l.p. Or in emergency room. I have many questions and I’m searching for real answers here.

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Nice presentation

As for the people like me whom suffers from I.H. I can say that insurance is set up to fail us and deny us of any treatment other than medications that don’t work. What category of a patient would I fall under? Considering the fact that this type of headache has NOT Been given it’s own title name in the medical field. Migraine headache and any other headache KNOWN. Migraine medicine does not work. Insurance doesn’t cover anyways. Also having to deal with having many allergies to medications being KNOWN I’ve had damage to my bladder and body from horrid side effects from the diamox and lasex. So now I have these to add to my record. I’ve had 5 lumbar punctures which was the ONLY relief I’ve received which gave me at least several days of tolerable pain so I can at least function within my limits before the pain rises again. I am 54 , not obese, have no uterus due to hysterectomy from uterine cancer 9 years ago. I don’t fit in your statistics from what I’ve learned thus far. Insurance denies me the option of a stent or shunt even after the fact that I am allergic to the medications tried as per the set up to fail method they use. This is ABSOLUTELY UNACCEPTABLE. Im being told even by the neurologist optometrist not to have any more lumbar punctures to relieve pressure because it’s too invasive and I’m likely to get an infection. Yet expected to just suffer. I was told insurance will not cover a shunt or stent because I’m not going blind. This is UNACCEPTABLE. I’ve been suffering for 6 months now. Following instructions from doctors. I should have been given the proper professionals from the beginning. I still have to be put on a waiting list to get in to see the neurologist and whoever else addresses this type of condition. I’d like this type of headache to have it’s own title put in place before I die. That is my wish. I feel like I’m going to literally die waiting for proper care. I have no options in front of me at this time. Medications do not work for me and I will NOT take invasive medications to dope me up 24/7 or that harm my body causing more pain and discomfort. It’s absolutely maddening at this point. I ask a lot of questions and receive no answers. Therefore there’s not much hope at this time. I am seeking therapy at this time to talk to someone about what this has done to MY LIFE. I’m NOT a STATISTIC or case number . I AM A LADY WITH A NAME and in need of ACTUAL REAL HELP. I’m in Saratoga springs Utah. I’ve had high hopes coming to this state to live. I was terminated from my job from this due to becoming bedridden. I’m unable to even drive myself to appointments. It’s too painful to even be driven to the hospital now. This is not a headache of any kind. Let’s get that straight right now. I’m set up for failure every turn. I’m ready to go postal with rage if it weren’t for the faith I have , the light within which keeps me a kind empathetic lady. I recently had to be taken to the closest ER because I literally feel I’m going to die from pain. Makes me vomit which causes my throat and chest to spasm.Having trouble with balance too. This brain pain which never ends, my eyeballs feel like crushed grapes. It’s ABSOLUTELY HORRID and TERRIFYING ME. so what category do patients like me fit into ? Who will help me? I have medical ptsd and it took a lot for me to have to go to the ER recently to be given a bandaide and sent home to suffer again. I’m not a pain medication addict in any way. I want a cure, a solution so I can live my life doing all I could with my kids and grandkids. They are my reason for living. They are all I have that means anything. This so called I.H. Headache is in a class all on it’s own. With all the research and studies there should be some better answers in my opinion. Thank God I’m not blind or I wouldn’t be typing this message. What can I do to have my case heard and accepted into the medical world? What steps do I take to have a title given to this HEADACHE FROM UTTER HELL so others will be placed in a proper category and receive proper care in a swift manner? Now that I’ve spent every cent I have ,lost my job and have state insurance,I’m finding out that nobody cares whatsoever except my GP. Since there’s no proper title for this rare type of headache, I’m set up to fail. UNACCEPTABLE AND UNDENIABLE FACTS HERE. I just can’t type anymore as this is raising my blood pressure. Ok I’m back. So dr. Wants to put me on blood pressure medication. I said no because it’s the pain causing that. When pain is relieving from the l.p. My blood pressure is fine. I’d be on 15 different medications by now if I allowed it. Without them caring about what damage from rare side effects I’ve already been through. So WHO will help me? Where do I go? Treating this as a migraine is absolutely INSANE . Not a MIGRAINE HEADACHE. I titled it H.F.H. THE HEADACHE FROM HELL. there is no nicer words I can think of considering I’m in so much pain.

OMG

To update my comment, I’ve since seen the ophthalmologist and interventional radiologist for follow up and thankfully, there’s no signs of stent blockage and the areas of stenosis aren’t hampering the improvement of the optic nerves. The radiologist surmised that the pressure-like symptoms are being caused by an aggravated occipital nerve due to the stent expansion. I was familiar with what he was talking about because I had just days before watched this video and heard Dr. Patsalides speak on the subject in regards to the trigeminal nerve. An occipital nerve block is going to be tried in the near future to alleviate symptoms. Thanks again to IIH Hub for offering this educational info. I told both my ophthalmologist and interventional radiologist about the channel-they would be wonderful additions to your lineup! (Mayo Clinic)

Its hard when you you don't have IIH under control..It difficult to walk, Exercise increase pressure.So frustrating.I enjoy eating heathly. Thankfully My doctors are caring

Such good information. I wish I would have known about this session so I could have asked some questions of Dr. Patsalides. Any chance at all that my comment/question can be forwarded to him? I’m an older than average IIH case, having been diagnosed 30 years ago and then had a shunt removed last year due to an emergency surgery. The neurosurgeon thought I probably didn’t need a shunt anymore but he was very wrong. Thankfully, due to being very sick, miserable and desperate after having my faithful old lumboperitoneal shunt removed, and being given the only option locally of having a VP shunt placed (NO WAY) and having that driving me to look for information, I scoured CZcams and found videos of Dr. Patsalides describing stenting for IIH instead of shunts! It took a Herculean effort, but I got an appointment at Mayo Clinic last fall and now have two venous sinus stents (Zilver stents), one in each transverse venous sinus. There’s a section of severe stenosis adjoining the stent on the left that the doc could not maneuver through during the first procedure nor the second, so he opted for placing stents where he did. My vision has been saved, intracranial pressure symptoms are greatly improved, but not totally gone. I’m still having vision problems and some intracranial pressure symptoms. Is there any way Dr. Patsalides would consider looking at my last CT-V’s and seeing if he can spy anything “unusual” about that particular section of stenosis? His expertise is invaluable. I’ll be meeting with my stent doc soon for more follow up but sure would appreciate as much information as I can get. (Side note: Dr. P. spoke on non IIH headaches being studied to determine if they can possibly be helped by stents. I suffered from what were diagnosed as migraines, and what I thought were IIH related headaches for years, but migraine medication always helped get rid of them. Since having the first stent placed last fall, I’ve had maybe two or three migraines/headaches that were bad enough to warrant taking a prescription migraine pill. Contrast that number with previously having migraines a few times a month on average, and they were severe. I am on topirimate due to IIH but was on it prior to stents and was still having to take migraine medication. I’m hopeful the stents eliminated the cause of my decades long migraine history.)

2 questions: 1. Where are those gradients coming from? Any specific part of the dural sinuses? I wonder if low gradients between sigmoideus sinuses and internal jugular veins were also included in the <4 gradient threshold study. 2. 16-18mmHg are references only for SSS? any references for normal manometric pressures when it comes to transverse and sigmoideus sinuses? Should be 16-18mmHg or lower as well? Thanks.

Size of tumor?

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