Note: These Answers From Doctors Cannot Be Reprinted In Any Way.
- I've been diagnosed with Chiari, but haven't been decompressed yet. Is it safe to exercise prior to surgery?
- What kind of a doctor would you see to diagnose Ehlers Danlos Syndrome?
- I couldn't help but notice that it seems like many members of this community have herniated cervical disks in addition to their chiari. Is there a connection between chiari and herniated cervical disc? Also, how do you know if your symptoms are coming from the disk or the chiari?
- Is there a link between Chiari and the ability to maintain body temperature? My 10 year old daughter had chiari and was decompressed on 6-21-07. We have a very successful outcome, but I notice that she gets cold easily and she does not tolerate heat very well, it almost always makes her sick if it is very hot.
- If ICP can compress the pituitary in the sella, does it compress the Pineal Gland? This is where you form melatonin for sleep. Is this why there is insomnia, restlessness in Chiari?
- How common is it to develop arachnoiditis after a myelogram?
- Does tethered cord surgery cause or enhance cranial-cervical instability?
I've been diagnosed with Chiari, but haven't been decompressed yet. Is it safe to exercise prior to surgery?
November 2008
Dr. Heiss:
Some exercise is fine.
If so, what do you recommend?
Dr. Heiss:
Aerobic exercise such as walking, running, and swimming are fine. Heavy lifting is generally not recommended, especially if
you have an associated syrinx.
Dr. Bolognese:
Elliptical Exercises. Avoid Straining
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What kind of a doctor would you see to diagnose Ehlers Danlos Syndrome?
November 2008
Dr. Bolognese:
Rheumatologist. A nationally recognized EDS Specialist would be preferable
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. I couldn't help but notice that it seems like many members of this community have herniated cervical disks in addition to their chiari. Is there a connection between chiari and herniated cervical disc. Also, how do you know if your symptoms are coming from the disk or the chiari?
November 2008
Dr. Heiss:
Many patients with Chiari I and syringomyelia have disk disease but usually not a significant disk herniation, in other words,
one not large not enough to compress a nerve root or the spinal cord. Usually syringomyelia is the cause of the symptoms.
The physician has to decide if symptoms fit better with Chiari or with herniated cervical disk in other patients.
Dr. Bolognese:
There is no increased incidence of cervical disc herniation in CMI patients but there is a increased incidence in EDS patients
Dr. Oro:
Cervical disc disease is one of the most common conditions treated by neurosurgeons. Thus, it is also common in persons with
the Chiari malformation. The two are not directly related.
It can sometimes be difficult to tell if the Chiari or cervical disc/arthritis is causing the pain/HA. Disc problems in the
upper cervical spine produce pain radiating to the occipital area. The pain can worsen with looking up.
A high quality MRI is performed to look at the upper cervical nerves in the spinal canal. In a few cases, a CT scan has
shown more arthritis in the facet joints of the spine than is apparent on the MRI.
To learn more, search online for cervicogenic headache.
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Is there a link between Chiari and the ability to maintain body temperature? My 10 year old daughter had chiari and was decompressed on 6-21-07. We have a very successful outcome, but I notice that she gets cold easily and she does not tolerate heat very well, it almost always makes her sick if it is very hot.
November 2008
Dr. Heiss:
You can take her temperature periodically and see if her body temperature is abnormal during hot or cold weather. You can ask your
primary care physician or pediatrician to evaluate her for this.
Dr. Bolognese:
CMI can affect the pituitary gland and the thyroid hormones, thus effecting temperature regulation.
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If ICP can compress the pituitary in the sella, does it compress the Pineal Gland? This is where you form melatonin for sleep. Is this why there is insomnia, restlessness in Chiari?
November 2008
Dr. Heiss:
The pineal gland is not compressed if the ICP is elevated. Melatonin tablets can be found in health food stores and some
people find that they help them to sleep. Chronic problems with sleep can be evaluated at specialized sleep centers.
Dr. Bolognese:
The pituitary gland is affected. The pineal gland (which is 2 inches away) is not.
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How common is it to develop arachnoiditis after a myelogram
November 2008
Dr. Heiss:
Up to about 25 years ago some myelograms were performed with Pantopaque, which can cause arachnoiditis. Since then the
dye used for myelograms has been water-soluble and has not caused arachnoiditis.
If you are unable to have MRI's, in my case due to a pacemaker, will one every year or so to monitor my condition do more harm than good, when it comes to scarring in the area, particularly in a person with eds who is prone to spinal leaks.
Dr. Heiss:
In general for medical care you would get a myelogram only when needed to evaluate a change in your condition that would make you
consider further treatment. This may mean that you would not get another myelogram for 5 years or longer. Discuss these issues
with your neurosurgeon.
Dr. Bolognese:
It was common until 10 years ago. With the new non-ionic contrast agents it is far less likely.
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Does tethered cord surgery cause or enhance cranial-cervical instability?
November 2008
Panel of Doctors From ASAP Conference:
No, detethering does not cause or enhance cranial-cervical instability.
Dr. Bolognese:
Mechanically, it does not appear possible that cutting the filum could
affect the craniocervical junction; the filum is tiny, the junction is big,
they are far apart, while the filum pulls the cord and not the bones/joints.
Clinically, we have seen a number of cases in which the symptoms of
craniocervical instability have increased after a tethered cord operation.
We do not have a sure explanation for this phenomenon, so far, only
theories.
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