Frequently Asked Questions.
Information for this will come from our forum when certain questions are asked repeatedly.
1. What's the difference between Chiari, Arnold Chiari, Chiari Malformation?
- Some use these terms interchangeably, Others use Arnold- Chiari to refer to Chiari type II. Other terms that may be seen are hindbrain herniation, cerebellar/tonsillar ectopia.
2. Does size matter?
-The definition of chiari used by most doctors is that the tonsils need to be herniated at least 5mm to be classified as chiari. There is no correlation between the length of herniation and symptoms or prognosis. However there has been new research which focusses on the Chiari 0 where there is no herniation as seen in classic Chiari, but that the tonsils block the CSF flow as much as Chiari 1 causing the same issue.
3. What are the different types of MRI's used?
- MRI's are magnetic resonance imaging machines. They are used to get better pictures to help with diagnosing. Common scans you shoudl get when getting diagnosed or for check ups include. Brain MRI - this is your money shot of your Chiari, it will show how big it is and whether other parts of the brain have been affected. Full Spine MRI- this can check for Syringomyelia, tethered cord and other related conditions in the spinal region that might explain your symptoms. CINE MRI - this is a good one to have as they put heart monitors on (CSF fluid moves with every beat of the heart) and build a flip books of images so they can see how your CSF is moving and if there are any areas of blockage. Others include MRI's of other joints and Flexion and Extension MRI's.
MRI's are mainly done lying down, however some hospital having standing, open MRI's. If you problems with enclosed spaces talk to your doctor before hand as there are many ways to work around things and issues related to children staying still for MRI's.
4. What is borderline or type 0 Chiari?
- Borderline Chiari is not always recognised by all doctors. It is where the cerebellar tonsils are not herniated but crowd the Foramen Magnum stopping CSF flow like in Chiari 1 malformation. This can cause the symptoms seen in Chiari 1 and can be treated the same way. It is also called Chiari 0 by some.
5. How did I get this condition?
- The exact causes of Chiari is not known, research on the causes are being looked into now.
6. I had an MRI that showed up Chiari but I have no symptoms. What does this mean?
- Chiari is mainly congenital so most likely you have had it from birth. Some people live their lives with none or mild symptoms and only find they have chiari when they get an MRI for other reasons. Some display symptoms from a very young age and continue to have symptoms through out life. The general onset is young adult hood for most.
7. Is it genetic and will I pass it on to my kids?
- Chiari has been found in families throughout generations. However whether it is truly genetic is unknown as of this stage. If you are worried genetic counsellors can help. Some people are the only people in a family to have it so its causes my be spontaneous.
8. How is Chiari treated?
- Chiari is treated in 2 ways, symptom alleviation or surgery. Both are different and aim at increasing quality of life and get rid of symptoms.
9. When should I have surgery?
- The choice of surgery and when is a hard choice that should be made between you and your neurosurgeon.
10. What is the surgery like?
- Surgery is different from person to person, even from surgery to surgery. Its best to read the stories on the site and forum to get a good idea of how people have gone through their surgeries.
11. What happens if the surgery is not successful?
- This can happen, however also remember your body has been in this state for most of your life so it will take awhile for it to adjust to this new norm. IF after a certain amount of time go back to see your neurosurgeon for advice.
12. What is the recovery time after surgery?
- Recovery times vary from person to person. Its generally about 24-48 hours in ICU after surgery for monitoring. 5-10 days in hospital. After release your doctor will tell you when its ok to get back to certain activities in life. Try not to push it you just went through a hard surgery. Its best to take as much time off as you can and slowly work back to it with lots of rest.
13. My doctor doesn't believe I have chiari and wont help me. What should I do?
- If your doctor is nice just not knowledgeable on the subject try bringing in literature and sitting down talking with him or ask for a referral to someone else. If you are still having problems its best to ask around the site for a good doctor in your area. You may have to travel.
14. Am I eligible for disability?
- Short answers yes with a maybe. Disability laws are different for each state in Australia. Its best to check with whoever does disability in your state. There have been many Australian Chiari suffers on disability already so it is possible.
15. Where can I got for help?
- There are many different places, like the forum, check our area on where to get help as well.
16. I have Syringomyelia and other relate conditions. Where can I get help?
- Check out our forum and other areas for Syringomyelia and related conditions.
Extras
1. Wear cushioned shoes to reduce neck strain
2. Get plenty of rest, when we sleep we convert short term memory to long term, our body relaxes and give it time to recover and heal for the next day.
3. Avoid alcohol, caffein, and high salt diet if tinnitus is a major symptom or any other dietary item that has been found to increase symptoms.
4. Stay in excellent physical condition and try and keep lean to take the strain off your body.
5. Avoid neck stressing and straining activities.
6. Have books and computer screen at a level where you don't have to strain your neck or arms to use.
7. Avoid heavy jewelry, scarves, ties that put strain on your neck.
8. Try and avoid waiting in lines or walking on uneven surfaces.
9. Do puzzles, crosswords and other mind games to assist in your short term memory
10. Get your eyes checked regularly as straining can cause and exacerbate headaches and neck strain.
11. Use extra rear vision and side mirrors to help avoid straining.
12. Ask your doctor the best supplements and vitamins to take on a daily basis to boost your health and immune system.
13. Seek counselling. This will be a hard time in your life with a lot of stress. Counselling can be immensely helpful getting you and your family though this time in your life.
Any other suggestions please leave in the forums!