By PETE DAL BELLO

Medical appointments are often brief and expensive. This is why preparation is so important and I have written this article to increase your chances of getting the most out of your time at the doctor's office.

The route Chiari patients usually take is to go from their primary-care physician to a neurologist to a neurosurgeon. Let's discuss visiting a neurosurgeon, who is located out of town, so all of your bases will be covered.

If you have to stay at a nearby hotel or motel, make sure that you reserve your room directly after you make your appointment. This will insure that you will have a place to stay and will be one less thing to worry about when you already have enough on your mind.

For those that have fatigue issues and live a far distance away, consider reserving your room a day early. This is what I do. While it is more expensive, it allows me to get some rest, have dinner at a nearby restaurant, review my paperwork and then get some sleep for the next day's appointment. If I didn't do that, I would be too exhausted for the appointment - which is certainly a bigger investment than any hotel expense.

If you have never been to the medical office before, you should check that out before going to the hotel. This way you will know exactly where it is located, as well as the parking situation and you will be ready for the next day.

When first making your appointment, ask the receptionist if you need to fill out any paperwork in advance. New patients usually have to fill out a patient questionnaire about their medical information (health, symptoms, pain levels, insurance information, etc.) Unless you can download it off their web site, have them mail it to you so you can fill it out at home. Not only will you have more time to complete the forms, but you also won't have to rush through it while sitting in the waiting room. If you have any questions, there will be more than enough time to call the doctor's office to ask them.

If I ran a medical office, I would make sure that patients are called 48 hours in advance to remind them of their appointment. Ask your receptionist to call you 48 hours in advance of your appointment - especially if you live out of town.

Always arrive at least 30 minutes early for your appointment. This way, you won't rush through traffic or frustrate yourself trying to find a parking space. What if the bus or other form of transportation is behind schedule? It will also allow you time to handle the items on the pre-appointment checklist that will be discussed below.

Here is a list of what you should bring with you (You should make xerox copies of every paper that will be given to your doctor. Not only will it be in your records, but you can also bring it to your appointment as a guide as certain things are discussed.):

1. Your insurance card and your referral (most likely, you will be referred to your neurosurgeon by another doctor)

2. Cash, check or credit card to pay your co-payment.

3. (If you have an HMO) A Letter of Authorization from your insurance carrier. If this letter is not on file, you will most likely have to pay the consultation fee on the day of your appointment.

4. Completed patient questionnaire.

5. Any films (MRIs, CT scans, etc.) and reports related to your condition. When you have an MRI or another imaging test done, ask the radiology department to send you a copy of both the film and written report for your records. The films will be on a CD-ROM so they shouldn't take up very much space. This will also be helpful in case you need to see another doctor for an opinion. Ask the neurosurgeon's office if they would like you to send the film ahead of time. If yes, then call before your appointment to confirm that the CD-ROM and written report of that film has arrived. Or they may ask you to bring them with you to the appointment.

6. Xerox copies of medical records relating to your condition (consultations, as well as reports from any operations or radiology exams as mentioned above).

7. Learn as much as you can about Chiari. Spend time visiting the International Chiari Association (ICA) web site, as well as our Facebook page and YouTube Channel. The more you know, the more efficient and beneficial your appointment will be.


Make lists so you don't risk forgetting something important, like the following:

1. Have a list of your conditions and a list of your symptoms, writing both in the order of severity. Make sure to note any changes in your headaches, neck pain, vision, speech, hand coordination and walking ability.

2. A list of the medications you take, including herbs and supplements. Here is an example: Name of Medication, 10 mg, one per day. It is important that all of your doctors know all of the things that you take so they won't unintentionally prescribe a drug that can cause a serious reaction. Also, list all of the things that you are allergic to so they can include them in your records.

3. Is there something you do or take that helps your condition? Let your doctor know.

4. Also, let the doctor know if anybody in your family also has Chiari. Sometimes, it runs in families.

5. Have a list of questions for your doctor. A good tip is to buy a spiral notebook. List your questions on the left page and write the doctor's answers on the right page. Afterward, you can rip all of the pages out, staple and keep them in a folder for future reference.

Always bring at least two pens with you for your notes, just in case one runs out of ink.

What questions should you ask the neurosurgeon? Well, every person's situation is different but I think the following apply to the large majority of Chiari sufferers. Since time is limited, make sure to ask your most important questions first:

a. What kind of tests do I need?
b. Do you recommend that I have surgery?
c. How many decompression surgeries for Chiari have you performed?
d. (If you don't recommend surgery) Will you be checking up on me to see if the severity of my Chiari gets worse?
e. (If you recommend surgery) How long will it take? How long will I be in the hospital and what are the plans for my recovery?
f. What are the risks of surgery?
g. While there is no cure for Chiari, what do you think are reasonable long-term goals for my health?
h. What will the surgery cost and will my insurance cover it?
i. Is there anything I can do right now that would help my health?

The doctor will ask you many questions and put you through a series of neurological tests. Here is something to remember: You know all the answers to their questions because nobody knows your health better than you do. While you may be tired of answering the same questions and going through the same exams, it is very important for you to hang in there and work with the doctor.

6. You should always have a "Current Health" folder with you at your appointments, which would contain copies of all the above information. Examples of other folders to keep at home, which should be separated by year, are the following: Medical Expenses, Explanation of Benefits (Insurance Information), Chiari malformation, Medical Tests (Written reports of lab work, MRIs, etc.), Film of MRIs, etc., Medical Records, Medication Information and Misc. Health.

It is important that you keep track of your expenses not only for your personal budget, but for your taxes as well. I've had several years where my itemized deduction was greater than my standardized deduction. Make sure to keep the receipts for your co-payment, any meals, parking, hotel, etc. - anything that is related to your health. Also keep track of your medical-related, round-trip miles for your taxes. This applies to the United States so please check your tax laws if you live in another country.

7. Have a list of all the doctors currently treating you, especially the one that referred you to the neurosurgeon. The list should also have their office address, as well as their office phone and fax numbers. If the doctor has a web site address, include that as well. This way, you'll have the information with you in case you or the medical office need it. It is also helpful, and I recommend this, for the doctor to send copies of his/her report to members of your medical team.


As prepared as you will be after reading this detailed article, another piece of advice is to bring along a friend or relative. Not only will this person keep you company, but he/she might remember something that you have forgotten. Another set of ears can be helpful and this person will also develop a better understanding of what you are going through, especially if they are able to provide assistance.


OTHER HELPFUL HINTS:

1. If you decide to have surgery, I suggest that you seek the opinions of at least two neurosurgeons (if possible) before making this important decision.

2. Bring a copy of the discharge report if you have recently been hospitalized.

3. If you have a heart problem, bring a copy of the most recent summary from your cardiologist.

4. Bring snacks with you if you have diabetes or hypoglycemia.

5. Always bring reading material because you never know if you'll like the magazines in the waiting room.

6. If you have to cancel or re-schedule your appointment, please call the doctor's office at least 24 hours in advance so you won't be charged for a late cancellation.

7. Don't expect your appointment to start on time, be patient, you might have to wait. It is easy for doctors of all specialties to fall behind schedule.

8. If you are nervous, and I know it is difficult not to be, try to relax. If you've done everything you can to prepare for this appointment, you should be able to go in with confidence. By following all these steps, you will always be prepared.


TOWARD THE END OF YOUR APPOINTMENT:

1. Ask if a follow-up appointment needs to be made. If it does, then repeat the steps again from the beginning of this article.

2. If you are being sent for tests, find out when you will receive the results. Request a written report and, if radiology is involved, a CD-ROM of the film.

3. If you are prescribed medicine, make sure that you know the answers to the following:
(a)  What is it supposed to do to improve my health?
(b) Is there a generic substitute (this will save you money)?
(c) When and how long am I supposed to take the medicine?
(d) What are the possible side effects?


FINAL THOUGHTS:

In an introductory letter that I received from The Spine Clinic of Los Angeles, they mentioned the following that is worth repeating: "Patients who participate in their own health care decisions are far more likely to achieve an optimal level of healing and recovery."

While doctors are usually better educated and better paid than their patients, never be intimdated by them. Their job is to help you. Look at it as a partnership. If you can trust your doctor and feel comfortable working with him/her, you are probably on the right track.


Pete Dal Bello is the founder and president of the International Chiari Association (ICA). He has Chiari.

(c) 2012 International Chiari Association (ICA).  www.ChiariAssociation.org
YOUR SOURCE for Chiari Information

SOURCES:
Mayo Clinic, American Academy of Neurology, UCLA Health System and The Spine Clinic of Los Angeles.