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What Now? After Diagnosis

Receiving the diagnosis of IIH will bring you towards starting safe and effective treatment

It can be life-changing once you are given the diagnosis of IIH. You will understandably feel a wide range of emotions and will need time to process all of the information given to you about this condition. Hopefully, you will find comfort and insight into the changes you have been experiencing in your health. Receiving the diagnosis IIH after an extensive workup will bring you towards starting safe and effective treatment.

What to expect after you have received your diagnosis will be determined by the severity of symptoms or clinical findings you currently have. Your medical team will guide you in the direction that you will need to take. In general, your next steps can happen in an elective, emergent, or in an unpredictable manner.

Elective

If you have symptoms without vision changes or papilledema that are controlled with at-home remedies, it will allow you some time before you make any decisions. Manageable symptoms may allow you time to see the appropriate specialists according to your schedule and arrange for any further workup needed. Prior to your visits, you will have time to educate yourself and prepare for conversations with your providers. During the visit, you will have time to discuss treatment options with your medical team and make a treatment plan that is right for you.

Emergent

Symptoms such as vision loss or uncontrolled headaches may require immediate intervention. You may need a lumbar puncture (also known as a spinal tap) to immediately relieve pressure within the brain and optic nerve. If symptoms are not improved after this intervention or cannot be performed in an office setting, you may need to be admitted to the hospital for expedited and alternative treatment. In cases where medical care is required on an emergent basis, things may feel rushed and you may not feel in control. The accelerated speed at which emergent care is done is to prevent permanent injury to your brain and vision. Though some things may not be explained immediately, your medical team is working expeditiously to get you better.

Unpredictable

As the course of IIH changes, your course of treatment will change. At one moment your treatment may not be controlling your symptoms as it used to. This can prompt further testing, more appointments, and consideration of other treatment options.

Here is a helpful checklist of recommended items to bring to your IIH specialists:

  • Any documents pertaining to your work-up such as primary care physician notes, emergency room reports, and hospital summaries
  • Any laboratory studies, including lumbar puncture results
  • Imaging reports and images of: CT scan of brain, MRI of brain, angiography of brain. Obtaining actual images or your scans may entail you going to the center where it was performed to have it placed on a cd-rom
  • Surgical reports such as lumbar puncture, placement of ventriculoperitoneal shunt, and venous stent (if applicable)
  • A list of medications you are currently taking or prescribed (or bring the bottles medications)
  • Family or loved one to help you communicate, ask questions, or remember what was being said during the visit

Now that you have a diagnosis of idiopathic intracranial hypertension, getting organized, educated, and prepared will help you feel in control. Building a network of family, friends, and others with IIH is essential for your medical journey. Read Explaining IIH to family and friends for helpful information on how to involve your loved ones.

 

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