Navigating through the healthcare system is overwhelming and stressful. It is even more difficult when battling IIH symptoms while trying to make phone calls, drive to appointments, and recall important details. When you are diagnosed with a rare condition such as IIH it can also be challenging to find the right provider to receive appropriate care. You are not alone and with the help of family and friends, this process can be more manageable.
Having a support system of ones you trust will be essential. It is okay to ask for help. Having someone gather your medical records, drive you to your appointments, and ask questions on your behalf may be necessary. You will also need the support of your employer, co-workers, and many others to give you flexibility when you are having symptoms and need time off for appointments and testing. You may be entitled to paid leave, disability pay, and not be penalized for short-notice.
The Right Doctor for the Right Problem
Make sure you are going to see the right doctor. This will save a lot of time and money in the long run. All doctors are required to go to medical school which is typically 4 years after the completion of an undergraduate degree. Depending on the type of doctor she wants to be, a primary care doctor will train for 3 years after medical school. Specialists are physicians who have spent even more time in training than a primary care doctor to learn about a specific system. For example, a can spend an additional 4-8 years learning about the neurological system. Some doctors may develop an interest in very specific areas such as genetics or rare diseases. This is important because not every neurologist is comfortable taking care of one with IIH.
Once you have a referral for a specialist, start by calling the list of doctors on your insurance plan and ask if that doctor is knowledgeable with IIH. The office staff is usually proficient in knowing what type of patient the doctor is comfortable managing rare conditions. This is helpful because you can avoid making an appointment, waiting weeks to see this provider, only to find when face-to face with him that he specializes in sleep disorders.
Fortunately, the internet allows you to search for physicians and their interests. A lot of providers create a professional account and are active on social media. With the advent of telemedicine, you may be able to go under the care of a physician who is in a different state and still receive excellent care.
At this point you have likely undergone countless testing and bloodwork. It will be important to keep a copy of all these results. Believe it or not, providers do not have electronic access to your CT scans, MRIs or hospitalizations, especially if it is in a different hospital system.
One way to stay organized is to print out all of your results and keep it in a binder in chronological order. This is a difficult task and thankfully with records now available online, there are easier ways to be prepared for your appointments. With electronic medical records you can take a snapshot of everything and place it in a document center such as dropbox. There are applications -apps- that can be downloaded on your smartphone that can keep everything organized and secure. Some examples are Chart Span and Capzule.
Though it may be enough to read an image (such as a CT or MRI) report for some providers, others like to take a deep dive and actually look at the images themselves. There are many reasons for this: sometimes the report is not fully detailed, something relevant may not be mentioned, and it can be used as a comparison. This is extremely helpful if you have the actual images on a disc so the provider can upload them onto their computer and look at it themselves. You can obtain images of your scans by calling the facility that you have the imaging performed and sign a release of records. It is usually free of cost.
During the visit with the specialist, you may get ‘stagefright’. This is normal. By bringing a loved one, they can help you overcome these very important visits. Most providers are allotted 30 minutes to see a new patient. To optimize this time, verbalizing what is important to you is a priority. They may ask you a timeline of symptoms, a list of medications you were on, when was your last visit to the emergency room and “when was your last MRV?” This is near impossible to do off the top of your head, not to mention if you are having symptoms. Having someone you trust speak up for you, write things down, and provide helpful information can help your provider move you in the right direction.
In summary, 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 results
- Imaging reports and images of:
- Surgical reports such as lumbar puncture, placement of (if applicable)
- A list of medications you are currently taking or prescribed (or bring the bottles of medications)
- Family or loved one to help you communicate, ask questions, or remember what was being said during the visit
We hope to provide you a network of providers who are comfortable diagnosing, treating, and following up patients who have IIH. In the meantime, we are here for you to help connect you to a community of people, providers, and resources.