Venous Stenting for Intracranial Hypertension: My Experience



Venous Stenting for Intracranial Hypertension. Venous stenting is another remedy for intracranial hypertension patents which have one thing known as cerebral stenosis. It’s much less invasive than a VP or LP shunt, and infrequently has much less problems. Latest research have proven that the majority sufferers which have undergone stenting have had a major discount in ICP ranges and signs related.

Venous Stenting for Intracranial Hypertension

To be able to know for those who qualify for stenting, it’s essential to first have one thing known as a cerebral angiogram. Many should journey to discover a specialist to deal with them, as this isn’t a typical process.

Final yr, I had 2 stents positioned in my proper transverse sinus at Weill Cornell in NYC. Right here is my expertise with stenting and a few data that I’ve realized alongside the best way.

My left transverse sinus was hypoplastic (not absolutely developed) and did not have any stream, and my proper transverse sinus had extreme stenosis. Sadly, I did not have a lot symptom reduction, however my case is a little more advanced than many.

I later realized I’ve a connective tissue dysfunction known as Ehlers-Danlos Syndrome. I even have chiari malformation and craniocervical instability. These circumstances could cause all the identical signs of IIH–and I’ll quickly bear surgical procedure to deal with them.

FACEBOOK GROUP: “Stent/IIH”
https://www.fb.com/teams/198904797135988/

Medical doctors/facilities focusing on venous stenting for IIH:
**remark beneath if you already know of extra docs**
-Dr. Athos Patsalides (Weill Cornell)
-Dr. Moghekar (Johns Hopkins CSF heart)
-Dr. Kenneth Liu (at present not working towards)
-Dr. Kyle Fargen (Winsten Salem, NC)
-Mayo Clinic Rochester
-Dr. Dale King (Kentucky)

My surgeon speaking about venous stenting: https://youtu.be/0kPvLySVJlo

Dr. Athos Patsalides + latest analysis research on venous stenting:
https://jnis.bmj.com/content material/11/2/175

Dr. Liu + venous stenting in EDS sufferers: https://vimeo.com/190164038

Johns Hopkins + venous stenting:
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebral-fluid/procedures/ptc-stent.html

Affected person experiences:
http://weillcornellbrainandspine.org/venous-sinus-stenting-patient-stories
https://weillcornell.org/information/how-a-venous-stenting-procedure-helped-one-woman-find-relief-from-pulsatile-tinnitus
http://weillcornellbrainandspine.org/patient-story/i-was-ready-not-be-lost-cause
http://weillcornellbrainandspine.org/patient-story/it-was-time-do-something
https://youtu.be/__M9v1FEHfs
https://youtu.be/kLa_EqrSl50

#intracranialhypertension #pseudotumorcerebri #venousstenting
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50 thoughts on “Venous Stenting for Intracranial Hypertension: My Experience”

  1. I have just had stenting in my left Transverse Venous sinus due to 2 and a half years of headaches, tinnitus, Brain fluid leaking into both inner ears and just a feeling of constant pressure feeling in the head.
    Although the headaches and pressure has pretty well gone which is fantastic, I still have fluid leaking into the inner ear and tinnitus. So all in all its been a big plus. Apparently I will have to go further stenting which is a bit more riskier if I choose and that may resolve more issues.
    Thank you for explaining your experience which was pretty much what I went through. Hope all is still well with you.

    Reply
  2. Thanks for sharing your experience. I’m sorry for all the other health issues your facing. My 3 children have IH & much mire. I think a stent would be a great option for all of them possibly. You are so courageous & amazing. All of you IH peeps are true WARRIORS!! Take Care & hope you find relief. 💚💙💚💙💚💙💚💙💚💙💚💙💚💙💚💙💚💙💚💙💚💙💚💙💚💙

    Reply
  3. I had surgery May 2016 venous stenting pseudotumor Cerebri .. I had no issues and all my symptoms disappeared right away after surgery .

    Reply
  4. I just had my stent done this Friday. I have pain behind my right eye and still and at time I eyesight get really cloudy in my right eye. I have to call my the Nuerosergen to see if this is a aide effect. Thank you for all this information.

    Reply
  5. Im really close to getting this surgery for my IIH. Ive had it for awhike and starting to have black spots in my vision. Its scaring me: so I am about to make this fecision. Im really scared but you make me feel better. Thank you

    Reply
  6. I'm doing the same thing. They said its because of being overweight…….

    but they're unsure

    But you do not look overweight or obese

    How did you develop this disease?

    Reply
  7. Hey thankyou for sharing. I was recently diagnosed with venous sinus stenosis. Patsalides has me on diomax currently and wants to check in two weeks to talk about if i want to procede with stents. Before you had stents what were some of the symptoms u had other than headaches and pulsative tinnitus

    Reply
  8. All gratitude to Dr Madida on YouTube for curing me of my Parkinson disease with his herbal medicine. You can Google search madidaherbalcenter website or visit Dr Madida YouTube channel to know more about his services

    Reply
  9. I got put on a diamox, no diuretic. I read that diamox only stops the CSF, doesn’t make you pee a lot. So now I might have to get surgery because my neurologist won’t listen to me

    Reply
  10. Loved your video! Currently in ICU recovering from veinous stenting. I also have a VP and an LP shunt, this is nuts! I hope you feel better and thanks for your support! ❤️

    Reply
  11. So you said that your tinnitus went away on your right side but now you have it on your left? That’s the main reason why I went to the doctor because I have it really bad on my right side. I haven’t been told I have ICH or Chiari…just tinnitus on my right said due to my stenosis. But I would hate to go through all of this and then it go to my left side

    Reply
  12. Thanks for the video!! I have recently been diagnosed with Transverse sinus stenosis…and I have to have a follow up with my doctor but with everything going on their office is closed so I’m having to wait to get additional information. But he did recommend a stent. So I just have so many questions and concerns and I’m happy you made this video.

    Reply
  13. So glad i came across this video i just got home from having this done they went in through my groin one through the femoral artery and the other side through a vein .

    Reply
  14. Dr. Albuquerque is with Barrows Brain and Spine Institute (BNI) out of Phoenix Arizona.
    That's who did my 2 stents. He's a great guy, but very busy, and not good with follow up for his patients. It gives an option for anyone in the SW area.

    Reply
  15. Hey rachel I am suffering from the same what you are. Please tell me did diamox help u? And how much csf pressure was urs? Mine came normal but I have hypoplastic right transverse sinus and symptoms of IIH. How to get diagnosed with chairi/ cci and eds?

    Reply
  16. Hi GTP, I'm a physiotherapist on the other side of the planet with a special interest in this field.
    I'd love to know a few facts about your case if you care to share:
    – how did you get the diagnosis of intracranial hypertension (IC-HTN)?
    – if it was via lumbar puncture/spinal tap (lumbar opening pressure), could you advise what your pressure was and the time of day? (please clarify whether it was cmH2O or mmHg)
    – at what age did you start to sense your health issues began? i.e. did things tend to get worse in your teens, or did you feel something was wrong in elementary school?
    – what was your lifestyle like prior to the increase in your symptoms? i.e. what sports and activities did you do? did you study well? did you do ok at school? concentration? memory?
    – have you ever had 'visions' of a religious nature? angels visiting you, talking with you?
    – how about visions or dreams of a disturbing and dark nature? like evil spirits or beings tormenting you?
    I have very good reasons for asking. Use your intuition on whether to answer or not. I understand if you choose not.
    Kind Regards
    H

    Reply
  17. You are amazingly strong!

    Don’t they do an MRV before any medication?
    Shunt!?!? First line of therapy? Eeesh

    Oh stenting is new?

    Angiogram is like that? I bought it was a contrast scan only?

    😓 CCI is annoying… I have this, and high pressure.

    Reply
  18. I have an appointment with a Dallas NS tomorrow to talk about venous stenting. I've been wondering about EDS ALL year because I also have had CSF leak, not to mention several other issues that are in line with a connective tissue disorder. My dad sent me info about Chiari, but I was told I don't have it, although I've never had an upright MRI. Our stories just sound so similar! Anyway, I follow you on Instagram, but it was nice to hear more about your story.

    Reply
  19. THANK YOU SO SO SO MUCH FOR THIS VIDEO! I had been so hopeful for an upcoming appointment with Dr Liu, but unfortunately, as you noted in the info, he's not currently practicing, and I've been at a total loss at who to see next because….yeah… Legit didn't know where to even look, so seeing the list of people and I can't think really right now but thank you so so so much, I'm so glad I found this video and thanks so much

    Reply
  20. i am going to prescribe a vegan diet . See The Gerson Therapy and Eat To live by Joel fuhrman. Becoming vegan can help with alot of things ( especially 50% raw )

    Reply
  21. I got that you have too much fluid pressure in your brain . I do know that Niacin does dilate blood vessels as does ginger …..I will research more as I get time . Thanks for all the links . keep praying for grace and guidance . i'm sure God has very special plans for you . How old are you ?

    Reply
  22. While it would have been nice for you to have more relief from your stent placement, if that was the case you wouldn’t have gotten diagnosed with EDS, or CCI. So while it has been hard, it has also been a bit of a blessing in disguise! 💚 I love you girl. You have so much strength and you amaze me! Keep up the good work. 💪🏻

    Reply

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