Compound CSF Disorders: Hypertension, Hypotension and ICP Monitoring

[@hiihtaa]

Thank you so valuable information. I so wish doctors around the world would reach out to you.

[@TheEDNC]

My treating neurologist and PCP both believe my severe but undiagnosed condition could be Intracranial Hypertension or Pseudotumor Cerebri. Both have written extensive referrals to Dr. Luciano's team at Hopkins for me to obtain a more thorough clinical evaluation. Both requests were REJECTED without explanation. So my doctors repeated their request and again they were rejected without explanation. Then my wife and I contacted Dr. Luciano's office directly and spoke with Ms.Tania Wright. We found her attitude toward ailing patients to be rather crude, even callously rude at times. You know it's very difficult to discuss and fight for yourself when you're very, very sick, especially with severe head symptoms as I have. Sadly I felt she really couldn't care less.... Then Ms. Wright recommended I go see an ophthalmologist for my acute vision loss. After explaining that I have already been examined by several, and that they have all concluded the problem is behind the eye, she again refused to allow the doctor to see me without giving an explanation, not even a referral alternative... nothing. I cannot for the life of me figure out why this occurred, it makes no sense and question all the positive reviews I've encountered. Hopefully this is not a direct reflection of Dr. Luciano and more a Johns Hopkins staff issue, not sure. Nonetheless I would strongly recommend STAYING AWAY FROM THIS PLACE unless of course you're willing to be completely HUMILIATED by his team!

[@RobertLongM]

Why aren’t all Neurologist’s required to learn about this stuff? So many people are suffering and being told to see a psychiatrist or get terrible surgery

[@pallavimehta9445]

Robert Long yes.. experience this everytime I go to a doctor in India.

[@cynthiainezgonz6906]

I have PTSD like so many of us! Going to the hospital i panic .

[@mandiroberts5665]

I had -25 pressure from a shunt that was visibly broken and had no problems on my mri.

[@tinamarielombrana-thompson9995]

Have you had anyone in the Dallas/Ft. Worth Texas area who has located a CSF specialist. Please let me know. I have had all of the symptoms mentioned after multiple spine surgeries and multiple csf leaks following 1. Epidural injections twice, 2. Major tear after my last spinal fusion/laminectomy in 2018 which these symptoms and so many others began in 2019 and also has a large collection of spinal fluid below L4-L5 in 2019 that nothing was ever done about that and since have had so so may lab tests ran for autoimmune diseases and diagnosed with TC and OSA but everything else is a mystery or they say related to my scoliosis and progressive degenerative disk disease or migraines? Note: I’ve only been in one car accident in the 70s Never any known head trauma.

[@BobbyJonesCSF]

Hi there! We do not have a specific recommendation for a neurosurgeon/neurologist in that area BUT Dr. Ian Heger is well versed in Chiari, Syringomyelia, etc. and is now at Medical City Children's Hospital in Dallas. He is obviously pediatric but they may have a recommendation of whom they work with as their patients age out into adulthood.

[@kellipadilla3371]

Did you ever get help in DFW area? I know of someone. Deborah Friedman at UTSW Neurology.

[@El_Superhombre_Blanco]

I am having many symptoms of intracranial pressure problems. I also have a syringomyelia, which I've have for a long time. Many new debilitating symptoms started about 2 months ago. I am severely disabled now. 2 months ago I was fine. I'm in Nassau County, Long Island NY. I've been getting no where doctors and the hospitals. I'm so weak and disabled o cant keep going from doctor to doctor. No one has screened me for IIH, even when I tell them I need to be checked. Please help me. I called the Bobby Jones foundation and left a message. I haven't gotten a call. Do you know who is a CSF/ IIH expert near me?

[@Poinsetia1977]

Does this cause high blood pressure?