Seeking care for intracranial hypertension: Rare Brain Disease

Hi @9yearspast. I notice you recently joined Mayo Clinic Connect. Welcome, and I am glad to see you create this discussion. It may be well worth your time to be seen at Mayo Clinic if you are not getting the help you need at home. You indicate a rare brain disease, and rare is something they do well! I am sorry you are struggling.

I am not sure how long it has been since you’ve talked to them, or just how far in the process you got. I am a patient at Mayo Clinic, Rochester and have a Clinic ID#. I would think if some time has passed and if you didn’t make it far enough to get a clinic number assigned…you will need to start over. I’m not sure.

Here is a link to make an appointment. You would fill it out online, or if you call them you could simply ask them if they still have your information. Regardless, it will be important for them to understand exactly why you want to be seen and what you want to accomplish. At times it has taken persistence on my part but I have never had an experience with them that they left without making sure all my concerns were addressed. You will make the best progress if you are clear on what you want to accomplish before you call.
Make an appointment: http://mayocl.in/1mtmR63

I came to Mayo Clinic without one clear cut specialty I needed to see, and they have a wonderful process for this. If you truly are rare they might not have a clear cut path for you. They will need to create one.

What location are you want to go to? What is the condition you want addressed, or do you have more than one?

I wish to go to Rochester. I have intracranial hypertension. It is considered a rare disease. I had surgery locally in 2016. I cannot get the care I need here. Need sub specialist care. I had a brain scan recently here, but cannot get an appointment it is a mess. When I called about this before it was good. I gave up after this experience.

You have been dealing with a lot for quite some time, @9yearspast. You definately need some help and Mayo Clinic sounds like a good place for you to be. They take an integrative approach that would be beneficial for intracranial hypertension, especially since it can affect your entire body. I am hopeful for a good conversation when you call Mayo Clinic!

I want to invite @aprillelain and @kyleew6783 to this discussion since they have mentioned intracranial hypertension.

What surgery did you have in 2016? Do you know what has caused your intracranial hypertension, or is it idiopathic? Will you update me after you talk to Mayo?

@9yearspast
It is to bad your conversation with Mayo did not go as expected. I suggest you send your records so a Mayo provider can review. And if confused about what was discussed during conversation, you can call back and ask them to clarify what you should expect. The appointment coordinator you talked to may not of wanted to guarantee you an appointment because it is the providers who review you records that determine if Mayo can provide additional treatment.

It is definitely worth continuing with the appointment process.

It’s not that. I am not asking for a guaranteed appointment. I am going to wait for it to time out because I didn’t think I was being told to send the company records. I never expected this to happen. I want to speak with a different coordinator as it was confusing.

I can definitely tell you, but I am thinking of sending my scans to New York instead as there is a specialist. I am going to reapply at Mayo at another date. Then hopefully who I can speak with will be of the quality of the first person. When it did not go well I should have said I would call back and to answer your question it is no longer idiopathic because the cause had been found it was stenosis,

The person I spoke with seemed to be disappointed it what I had for information and didn’t seem to need what I feel is very important. I had a good visit with someone who seemed to understand. If you can text me when to time out will occur and I will request the visit further.

I absolutely know no appointment is guaranteed. Perhaps her not wanting information meant that they don’t treat intracranial hypertension. I have a stent. I have been having a very hard time and at this point I don’t have energy to advocate for myself. I have been dealing with the county hospital locally and am completely depleted.

Mayo does have specialists in intracranial hyper and hypotension in both Rochester and Jacksonville. I go to Jacksonville to see a Neurologist who specializes in this area. In Jacksonville she is identified as a headache specialist. It took me a while to find her. In my case the pressures are inconsistent and the lumbar puncture was not clearly indicative, but my symptoms were. Through trial and some error my headaches have lessened considerably. I hope this helps. Don’t give up! Your quality of life is worth the effort.

Unfortunately I am not well enough to travel to even my outpatient appointments. I tried for years to get follow up, but because there is not papiledema anymore there no follow up from the surgery. I tried PT/OT/Speech was not able to recover like others in other states. I spoke with my primary 1 year ago and he was willing to put me on DNR status. When a doctor would refer me I would get an upset medical assistant telling me I was cured and no longer have IIH because I have a stent. Without clearance from the eye doctor I can go to the pain clinic for Botox with a family medicine doctor. I am getting counseling and at this point focusing on quality of life. I had initially wanted to go to Mayo for this in the first place but was encouraged by my family to stay home as it was more comfortable for them. There is not neurologist care. I found a different hospital to go to for the Botox and lidocaine, but because I am vomiting and unhealthy I am confined to bed I am ok. Pain doesn’t bother me. I am used to it. The vomiting does bother me. I appreciate you adding the people, but unfortunately my case is different because it involved my eyes and damage to them permanently. It sounds like what Mayo can offer is the same as here relief from the pain. I was more interested in getting my life back and stopping the vomiting than pain management. Because of the lack of care possibly or the condition of IH for many years untreated I think this is the consequence. I could not get in to get my eye examination for years. I got a regular MRI at one point after 15 years of headache and nothing was found.