Seeking care for intracranial hypertension: Rare Brain Disease

Thank you. I have a headache specialist here and when I’m healthy enough get injections from that doctor to lessen the pain. I am glad to hear it is pain relief. What I was intending in was finding out the status of my stent. It doesn’t seem even worth it to go then, I wanted to see if I needed my surgery corrected or if there was a way to stop the vomiting. I just wanted my life back. Pain they treat here. I had surgery for prevention of total blindness.

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.

@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?

I so appreciate your idea although it is not possible. I live in a bad place where that is possible. A regular Ophthalmologist here can do a better job at this here. I and my doctors have felt this was important, but it’s something that they and I could not make happen. One doctor was appalled by this. I would need to get this done in Rochester. Unfortunately I am disabled and would have to go alone. I can’t be alone I need a caregiver with me. If I could secure one of those 5 minute visits here I don’t think it would help there is not even a visual field with them. The Opthamologist who view my eyes are terrified with what they see. It is a very bad case. I was not believed for 3 years so I couldn’t get an appointment. I have tried to go on palliative care but wasn’t sick enough to get it. Because of where I live people have told me to just stop medical and enjoy what is left of my life. This would not happen in other states. There is an immense shortage of everything where I live which means 500 people are trying for every appointment and the quality doesn’t matter. I had surgery and was wanting from Mayo if my surgery needed to be repaired. I got a scan done, but the office scheduled a video visit but I didn’t get a link, so I lost my appointment. They said they tried very hard. I am completely depleted from advocating for myself. I have fallen through the cracks with obtaining 2 appointments and about to fall through again. It happens to other people here with anything complex. Just is what it is. I was hoping Mayo could evaluate if I need surgery again. If it would improve my functioning so I could go back to work. I could care less about the pain and headaches as I am used to them. They are so much worse since my surgery.

It is painful just to write this. The last doctor who referred me was told I needed counseling which I get weekly. That doesn’t fix my eyes however. He cared and referred me. He knew. Then he moved away.

Oh and Zofran doesn’t work. I am on a scopolamine patch and have metoclopramide nasal spray for when it doesn’t work. I have to have something that holds it back. If the patch wears off I start vomiting like yesterday. I keep my eye closed a great deal of the day and this feels better. I have different vision in each eye and color vision is different per eye. I was told I should be happy I am not completely blind.

@tbgreif625 I am grateful that you told me this. I was interested in how my surgery looks and not dealing with pain. I wanted to know how to prevent having a stroke in my stent. I am so glad you told me. I did not understand why they didn’t want my surgical records. Pain is much worse post stent but they deal with it and it’s good enough. I am so glad I didn’t waste a trip for this. Locally my disease was missed for a long time because they didn’t look for the cause of the pain. I am so so glad you told me and the person I spoke with was unprofessional this time. Bad things can actually be good.

@jlharsh I decided not to continue with Mayo when I saw on here that it’s for pain management. I want to see if my surgery needed to be redone. I am fine with the injections I get for pain. I am glad that I didn’t go. The patient who wrote about the pain helped. I now see why they don’t want my neuro surgery records at Mayo. Unfortunately the neurologist doesn’t have records of assessing me only where the injections were placed. I can get an optic nerve scan. I appreciate you tagging the patient. I now understand and didn’t waste a trip or bothering a scheduler.