Chiari Connection International

Chiari Connection International

 
Doctor's Corner --- Questions Answered Page 4
Note: These Answers From Doctors Cannot Be Reprinted In Any Way.

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  1. I've been diagnosed with Chiari, but haven't been decompressed yet. Is it safe to exercise prior to surgery?


  2. What kind of a doctor would you see to diagnose Ehlers Danlos Syndrome?


  3. 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?


  4. 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.


  5. 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?


  6. How common is it to develop arachnoiditis after a myelogram?


  7. Does tethered cord surgery cause or enhance cranial-cervical instability?


  8. Patient had a fusion from scull to c-2& 3 using her own rib it was not tethered down with anything other than the cement substance, no hardware was used to attach the bone to the fusion.

    Now the patient whom is also a nurse herself has a floating fusion and it's not attaching. What questions should she be asking is how long to a leave the floating mass before correct with another surgery? Why did he do it this way see what is the percentage rate of his patients that I've had this problem?

    What is the reason for the body to reject our own bone graphing?


  9. Should I see a chiropractor? Please explain


  10. Should a person with Chiari get any epidural injections or LP's?



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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How common is it to develop arachnoiditis after a myelogram

November 2008
Dr. Heiss:


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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Patient had a fusion from scull to c-2& 3 using her own rib it was not tethered down with anything other than the cement substance, no hardware was used to attach the bone to the fusion.

Now the patient whom is also a nurse herself has a floating fusion and it's not attaching. What questions should she be asking is how long to a leave the floating mass before correct with another surgery? Why did he do it this way see what is the percentage rate of his patients that I've had this problem?

What is the reason for the body to reject our own bone graphing?


September 2014
Dr. Paolo Bolognese:

She had what is called an on-lay fusion, which consists in laying bone fusion material plus a bone graft on your bones, and waiting for fusion, which should "take" within 3 months. This is the way fusions were done long ago in adults and are still done in infants. This fusion modality requires postoperative immobilization (halo jacket).

Nowadays, it is no longer a popular technique for adult patients, due to its rate of fusion failure, and it has been replaced by a combination of instrumentation plus bone material.

Her body did not reject the graft. The graft did not "take" (= it did not get fused to her bone). Patients with connective tissue disorders often have a suboptimal bone metabolism, which is a further obstacle for grafts and fusions to "take". Bone stimulation does not have many chances to save the day, at this point.

If she is still very symptomatic, she needs a fusion revision with instrumentation.


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Should I see a chiropractor? Please explain.

September 2014
Dr. Paolo Bolognese:

Typical chiropractic manipulations can be harmful for CMI patients.



Roger W. Kula, MD, FAAN

As in any other discipline, not all chiropractors are created equal. To their credit, some have realized the potential for the presence of a Chiari I malformation and been a source of appropriate referrals to Chiari centers. Gentle massage and range of motion can certainly be helpful to patient's with secondary muscle spasm related to posterior fossa headache. However, more vigorous extraction and rotational movements can certainly aggravate symptoms and potentially be hazardous. For these reasons, it's important for patients to know the type of approach that a given chiropractor might use. “An ounce of prevention is worth a pound of cure.” There is a group of chiropractors that build themselves as “atlas orthogonists.” They purport to reposition the atlas (the C1 vertebra) in patients with potential cranio-cervical instability issues. Though generally a gentle process, I fail to understand the methodology behind this and have not observed it to be helpful in my own experience with only a couple of patients who were so treated. Patients should also be cautious with physical therapists who on occasion can be too aggressive in exercise and stretching maneuvers as well as deep massage which can as well cause worsening of symptoms.



Marcus Stoodley

I advise against chiropractic for any neck-related problems because of the risk of arterial injury and stroke. In addition, there is a concern that symptoms related to Chiari may be exacerbated



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Should a person with Chiari get any epidural injections or LP's

December 2015
Dr. Heffez:

Epidural injection should not pose a problem.

LP could aggravate symptoms or cause them to emerge. Therefore should be avoided unless absolutely necessary to diagnose an infection, rule out a Subarachnoid hemorrhage or exclude elevated csf pressure. In the face of severe brainstem compression due to a prominent Chiari malformation an lp could prove dangerous by provoking further brain stem compression


Dr. Bolognese

The answer is quite articulate and comes from several years of experience.

Epidural injections are done most often before deliveries in pregnant subjects. This scenario falls under the general recommendations for pregnancy and delivery as follows.
We have the following general recommendation for labor and delivery:
  • A trial of natural childbirth is not contraindicated in patients with Chiari I Malformation (virgins or decompressed).
  • Epidural anesthesia, if necessary, may be performed with caution so as to avoid dural puncture (est. 1-2% incidence), which could potentially aggravate Chiari symptoms resulting from CSF leakage. In case of dural puncture, a blood patch should be performed right away.
  • Spinal anesthesia is not contraindicated although the potential for anesthetic related arachnoiditis is low but unpredictable. In case of dural puncture, a blood patch should be performed right away.
  • If vaginal delivery would be considered difficult, prolonged, or complicated, the threshold for a C-section with general or spinal anesthetic is lower in undecompressed or partially decompressed patients with Chiari I malformation.
  • For general anesthesia, extremes and prolonged neck extension during intubation must be avoided.
  • Refrain from the use of anesthetic agents such as fentanyl andketamine that may increase intracranial pressure.
  • If a very large Syringomyelia cavity is present at the beginning of the preganancy, an MRI should be obtained at the 25th week of gestation and a followup with the treating Neurosurgeon should follow.

Lumbar Punctures (LP) are divided in two categories: diagnostic andtherapeutic and they differ on the amount of CSF which is removed (typically up to 3-5cc in the former, up to 30cc in the latter).

Diagnostic LP's can be done in virgin CMI patients (= never operated before), regardless the extent of herniation, but:
  • They should be executed with a 22 or a 25 gauge needle
  • CSF should be extracted by spontaneous dripping and never by suctionor aspiration
  • The LP should have a clear purpose and should not be done "just because"
  • After the LP, the patient should stay supine and flat in bed for at least 2 hours
  • If spinal headaches ensue, a blood patch should be inserted sooner rather than later.
  • The same concepts apply to postoperative uncomplicated CMI patients.

Additional care should take place for postoperative CMI patients with complications, whenever there is a persistent and severe tonsillar herniation (compounded or not by cerebellar prolapse).

Therapeutic LP's, Lumbar Drain, and Lumbar Peritoneal Shunts should be avoided in virgin CMI patients and postoperative CMI patients with complications, whenever there is a persistent and severe tonsillar herniation (compounded or not by cerebellar prolapse). Therapeutic LP's, Lumbar Drain, and Lumbar Peritoneal Shunts can be performed in postoperative uncomplicated CMI patients. As anybody can understand, these are guiding principles, and are proneto be tweaked in individual cases, in the face of unusual anatomy or circumstances.

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