Connect
← Return to Seeking care for intracranial hypertension: Rare Brain Disease
Discussion
Seeking care for intracranial hypertension: Rare Brain Disease
Visiting Mayo Clinic | Last Active: 2 days ago | Replies (18)Comment receiving replies
I am so grateful to you all telling me that it would be for pain. I was wanting to go to check on if I needed surgery again. That explains why the person I spoke with didn’t care about my surgical records. I have plenty of pain management stuff here. I was looking for quality of life with intractable vomiting. Thank you all for explaining things to me. For me it was never about the headaches it was about my eye. My friend went to Mayo in Rochester and really liked it. I was thinking I would too, but I wanted something different. I wonder why they even wanted any scans if it is just to treat the pain. I had wanted to go for surgery there instead and that is what I should have done, what is done is done. I did it in the worst state for neurosurgery.
Replies to "I am so grateful to you all telling me that it would be for pain. I..."
Connect
@9yearspast My daughter was diagnosed with IIH in 2020. Her initial symptoms were vision loss/changes severe-headache due to too much cerebral spinal fluid causing swelling of the optic nerve from what I understand. She was and is being treated at the U of Iowa as she works for them. They were able to stop the progression of vision loss and changes with high doses of medication rather than surgery which was the next option. She
has permanent vision changes-a warping of her vision etc. in one eye from the IIH. She has been seeing an expert in IIH who is a Neuro Ophthalmologist Dr. Matthew J Thurtell at the U of IA. He has been slowly reducing her meds with monitoring several times per year. I had offered for her to go to Mayo, but she has been happy with her care. My other daughter also developed swelling of her optic nerve due to a different reason and also is now treated by Dr Thurtell. He is a very knowledgeable Dr and a nice person.
Is your vomiting from your vision changes? Do you see a Neuro Ophthalmologist? I don’t know where you live, but maybe this is the type of specialist you need if your vomiting is vision related. Does Zofran help enough to see a Dr?