World Arnold Chiari Malformation Association
 Questions you may ask your Doctor

Things to discuss with your doctor BEFORE surgery 

1. How many ADULT ACM Patients have you seen?
(change this to pediatric ACM patients for those of you dealing with children with ACM) There can be huge differences between the adult and the pediatric form of this condition. While there are some specialists who are well versed in both, many more have expertise in one or the other. It is not always interchangeable!

2. What exactly do you plan on doing to me, and how many surgeries of this type have you done? Unfortunately, because ACM is still rather rare, we don't often find specialists with hundreds of surgeries under their belts. Ideally you won't be the first ACM patient the doctor has operated on! (In this case being number 1 is definitely NOT an advantage!)

3. How do your patients do post-op?  What about long-term?
Watch out for anyone who promises you you will be cured. Or that all of your symptoms will disappear. While these are things to hope for, and are certainly possible, you should also be prepared for a lesser result. A good result is often defined in the research papers as a halt in the progression of symptoms. Many people get relief from some of their worst symptoms. Many people stay the same. A few get worse. Be sure and talk about this.

4. What is your usual follow-up routine post-op?
Standards vary from place to place, but you should know how often you will need to see the doctor, get an MRI etc, etc. assuming all is well. A few people were told they needed no further followup after the surgery. I personally think that's a bad answer. I'd be looking elsewhere.

5. How do you handle pain control for your patients?
This is the one thing many of you wished you had asked your doctor about. As we know from our membership, standards vary widely. But there is NO REASON you have to endure this surgery without adequate pain relief. Being told that the surgery is more dangerous with pain meds is simply not true in this day and age. Pain pumps, morphine, percocet, and a whole host of other narcotic medications are being used for this procedure safely. There are those who had to do the surgery without narcotic pain relief. We will never forget it. The majority of people on our list who have had the surgery had pain control. Ask about a pain team at the hospital...many hospitals have them. Also talk about nausea control...another big problem for some people.

6. Who do I call if I have problems down the road?
Many people expressed confusion as to whom to call ...their family doc? neurologist? surgeon? You can get some idea of the doctor's view of follow up by the answer to this question.

7. What happens if I still have symptoms after surgery or they come back?
Very important...and something that is difficult to talk about. For the surgeon it can feel like a failure..he didn't *cure* you...you should know how the surgeon feels about this, whether he considers this possibility, and how he handles it. How he will deal with YOU if you fall into this category.

8. How soon will I be able to resume daily activities?
While this will vary depending upon each case you should have a baseline idea of the timeline. If it doesn't seem realistic, ask questions.

9. Is there one of your post-op patients I can speak with?
Nothing beats advice from the horse's mouth, so to speak.

10. If you were in my position...what would YOU do?  Who would you want to operate on you?
An excellent way to get ideas for second opinions.

11. What is the reason that this procedure is necessary at this time?

12. What are the options if this procedure is not done?

13. What will / might happen if the operation is not done?

14. If the operation is not done at this time, can it be done later?

15. What are the advantages and disadvantages?

16. What is the anticipated outcome of the procedure?

17. What exactly are the expected or possible benefits of doing the procedure?

18. What are the specific risks that this procedure involves?

19. What is the recovery process after this procedure ?

20. Are there any other possible cause of compression? eg: odontoid process?

After you've asked these questions always get a second opinion.

 

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