My name is Nicola and I was diagnosed with Idiopathic Intracranial Hypertension (IIH) nearly three years ago.  IIH is a neurological condition that causes intracranial pressure in the brain.

As a result of my rare condition, I have had to undergo 28 lumbar punctures to drain excess cerebral spinal fluid (CSF) from my brain to try and save my eye sight. I have also had a lumbar shunt placed but that did not work, so I underwent brain surgery to place a ventricular shunt in my head.

This treatment has been intermittent and I am constantly in the hospital with blockages of this shunt.
 My eye-sight is deteriorating rapidly. Doctors are doing all they can, but there is currently no cure for IIH.

I hope one day, for everyone that suffers IIH, there will be an end to our pain and a cure.

Hope, it’s in my genes!

3 thoughts on “28 Lumbar Punctures, Brain Surgery and Hoping for a Cure For Idiopathic Intracranial Hypertension”

  1. Angel says:

    Hello . Hope all is well, I was wondering how all this started, I’m suspecting I have iih, please contact me if you can, 951-588-7047 text or call anytime!

  2. Summer says:

    Did they prescribe you a fluid pill after your lumbar puncture? I recently had one done to remove the CSF and they prescribed me Diamox. I felt better for like one day and now I feel the excess fluid is back. Currently waiting for drs appointment for follow up.

  3. Lisa Dye says:

    Hello. My youngest daughter which is 36 has this disease. She has always complained of headaches. But while she was in school “and believe me the schools were in control” her teacher went to the principal as well as the superintendent demanding I take my daughter to have her checked for ADD.
    She was a typical kid. She and her sister coming from a broken house me. I did what the school demanded and of course without any tests performed or referral to a neurologist she was placed on Ritalin as were so many kids in the late 80’s and 90’s.
    As time went on I took her off of it myself she was not the perky loved to aggregate her sister always making me laugh child.
    Fast forward 25-30 years. My daughter has lost her eyesight completely in one eye and the left eye is getting worse. She has the lumbar and spinal tap/puncture. She has been placed on so many meds. She threw up more times than I could count. Now today I receive the call. Momma my neurologist says this is very aggressive and we have no choice but to do the surgeries.
    Shunts, tubes to reroute flow. And one tube to her stomach. I stood strong and made sure I wrote everything down especially after her last stay in the hospital that the Hospital Dr actually had to google this disease. I couldn’t believe what I was hearing or seeing. None of the staff was equipped nor educated on her diagnosis nor prognosis. In other words we stayed for 2 days ….no answers nor tests because after waiting in the hallway “yes that’s where they parked my daughter” sitting upright in a wheelchair for a few hours and came out and said our impatient MRI machine is broke. They had already given her the injection to follow the Dye. Yes she was sick.
    I actually believe they thought she was faking.
    She never calls in sick
    She loves life
    She is a wonderful mother to my grandson
    Goes to all of his games
    She and my son in law just purchased their forever dream home. She pushed through a lot she’s a fighter. But she’s getting weak.
    I posted the ribbon, t shirts and the meaning of this horrific disease. Pleading to everyone to take a moment to educate themselves. I’m very passionate about this as well as cancer. Our family lost 3 immediately family members in 4 months in 2017. ENOUGH!!!
    I’m tired of the burocrats deciding what they WANT to TRY to come up with a cure.
    The money used to send the Tesla in space would have paid for so many prescriptions tests or how about educating the at least the nursing staff. My daughter may not get to see her only child graduate or see him marry or see her first grandchild.
    Someone PLEASE tell me what to do. I’ll do it. Not only for my daughter but for those who are fighting relentlessly.
    May God bless you all. I pray for a cure, for the medical field to be educated and for the neurologist who are seeing more of this and want the grants to research.
    Sorry I had a lot to say. I hope someone listened.

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