Chiari Treatment
How is Chiari treated ?
If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually. However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery. The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery (see details in Question 14). An alternative surgery involves placing a shunt (a tube like device) to channel the flow of CSF and relieve pressure.
How do I know whether to have surgery ?
The decision whether to have surgery is up to each individual and their doctor. Some of the factors that are considered are the severity of symptoms, whether the symptoms are getting worse, whether the nervous system is being compromised, whether there are any complicating issues, and the surgeon's own experience and judgment. Unfortunately, there is no single, objective measure to say whether someone should have surgery and many patients will find that different doctors may have different opinions. Some doctors are more aggressive in their treatment approach and some are more conservative. A recent survey about when to recommend surgery showed that there was general agreement among surgeons in the extreme cases - no or mild symptoms, don't operate; severe, progressive symptoms or syringomyelia, operate - but there was little agreement in the middle. In one of the survey's hypothetical cases, the surgeons were split almost evenly down the middle on whether to operate or not.
What is the surgery like ?
Decompression surgery is a general term used to refer to any of a number of variations on the same basic procedure. The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF. The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy). Often part of the top one or two vertebra are also removed (laminectomy). At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty).
There are many variations in how the surgery is performed, including (but not limited to) how much bone to remove, whether to open the dura, what type of material to use for a dural patch, whether to shrink or remove the cerebellar tonsils, and whether to replace the missing piece of skull with anything. Unfortunately, there is no consensus, and no strong evidence, on which technique(s) is the best. Because of this, it is important for patients to understand specifically what their surgeon will be doing and why.
The procedure itself lasts several hours and most people will spend a night in the ICU and an additional couple of days in the hospital.
Is the surgery always successful ?
As with any surgery, the chance of success depends on the individual case, so each person should ask their doctor what their chance of having a successful surgery is. It should be noted that success can mean different things to different people, so it is best to ask specific questions such as what are the odds I will be symptom free; what are the odds I will be mostly better; and what are the odds I will get worse.
Unfortunately, there is not a lot of strong surgical outcome research, but there are enough reports to get a general idea of the overall success rates. For patients with just Chiari (no syringomyelia), up to 50% become symptom free after surgery, with another 10%-30% improving significantly. On the flip side, for 10%-20%, the surgery will be a failure and they will likely require additional surgeries. Keep in mind these are not scientific numbers and each patient should discuss their own chance of success with their doctor.
What are the possible complications of surgery ?
This is another question that is important for every patient to ask their doctor so that they fully understand the risks and potential outcomes of surgery. Many of the complications of decompression surgery have to do with opening the dura and research has shown that opening the dura does increase the complication rate.
There is a risk of infection and sometimes the patch that is sewn in leaks or becomes scarred. A more serious complication - not necessarily related to opening the dura - occurs when the brain slumps further into the spinal area after the surgery.
What will happen to me if I don't have surgery ?
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The natural progression of Chiari - as doctors call it - varies from person to person and is not well understood. For example, why do some people develop symptoms in their 30's while others have symptoms their whole life? For many people with no or mild symptoms, the symptoms will not get worse and surgery will not be necessary. However, there are also anecdotal reports of symptoms becoming rapidly worse, sometimes after a sneeze or a fall. If a patient does not have surgery, many doctors will recommend monitoring the situation with routine MRI's and neurological exams.
How long will it take to recover from surgery ?
As to be expected, recovery will vary from person to person and will depend in part on a person's overall health and fitness before the surgery. Barring any complications, some people recover from a successful surgery in a few weeks, others take a few months, and others may take more than a year. Your doctor may suggest a physical rehabilitation program to regain strength and flexibility in your neck and may refer you to a physiatrist - a doctor of physical medicine and rehabilitation.
One factor that people sometimes overlook during recovery is that if they were inactive due to severe symptoms for a long period of time prior to surgery, they will need time to regain a general level of strength and conditioning.
Tips For Finding The Right Neurosurgeon
When trying to find a doctor, some things to consider are how many Chiari surgeries they do a year, how many total surgeries they do a year, are they up to speed on the latest thinking on Chiari, how they relate to patients, and what type of reputation they have among patients and the medical community (this is by no means comprehensive). There is no right answer to these questions; they are just intended as a way for a patient to feel comfortable with their doctor. One way to find a doctor is to ask around. Ask people in your community, ask any medical professionals you know, or go on the internet to find what you are looking for.
I had surgery, but I'm still in a lot of pain.
What can I do ?
One possibility is to see a pain specialist. A certified pain doctor will perform a thorough examination to determine the exact cause of your pain and may recommend therapies such as acupuncture, trigger point injections, over the counter medications, or prescription medications. Unfortunately, neuropathic pain - pain caused by damage to a nerve - can be very difficult to treat. Anti-seizure drugs, like Neurontin, work for some people but can have strong side effects. Many Chiari patients have found that they must try different things and see what works best for them
How many people have Chiari ?
There is no exact answer to this, because a rigorous study to determine this has not been performed. Once thought to be rare, the increased use of MRI's has shown that Chiari is much more common than originally believed. Confusing the issue is the question of how you define Chiari. Many people may have cerebellar tonsils that descend out of the skull, but they have no symptoms and probably never will. Studies have shown the incidence of this tonsillar ectopia may be as high as .5%-.7% of the general population. However, this does not mean that all these people have Chiari. Estimates for the number of people with true Chiari range as high as 500,000 in the
Also referred to simply as chiari (pronounced Kee-AR-ee)
Description
Chiari is a condition in which the cerebellum (back parts of the brain), specifically the cerebellar tonsils (shown in purple on the diagrams below) 'slips' into the space where the spinal cord travels into the skull.
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