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| Question and Answers/General Information---Page 2 |
Table of Contents
Page: 1...2...Previous Page
- Duraplasty Information
- More Information on Duraplasty
- "FACE ON FIRE" Symptom
- Halo Hints
- Invasive cervical traction description
- Local surgeon vs. specialist
- Not all chiarians are created equal
- Information on Duraplasty Materials
- Nerve Blocks: Are They Safe For Chiarians?
- Glyconeutrients
- Swallowing Hints
- "The Chiari Book"
- Where can I find more information on Syringomyelia?
Duraplasty Information
By: Dr. Bolognese
Duraplasties for CMI surgery are in a different ballpark when compared to the duraplasties performed in other neurosurgical
procedures. In all the other parts of the skull, gravity is working in your favor: the dura is on top, while the CSF and the
brain are on the bottom. In the posterior fossa, it is the opposite: the cerebellum and the CSF are on top, while the dura is
on the bottom. Example: if your neighbor has a broken and flooded toilet, do you prefer living in the apartment upstairs from
his, or downstairs? Water (and any other fluidish material) tends to run downhill... Second disadvantage: CSF pressure tends
to be higher than normal in CMI patients, which can be a problem for recent suture lines around the perimeter of duraplasties.
Different materials are used for duraplasties in neurosurgery. Not all of them are good for CMI surgery.
The worst is Duragen. It is made of reabsorbable suture material, woven together like a carpet. It is supposed to act as a matrix
for the growth of dural cells form the periphery of the patch. But, in the posterior fossa, the CSF seeps through the Duragen,
creating big gaps early on, way before any dural cell has made it there. Bottom line: the Duragen works anywhere else in the skull,
but not in posterior fossa. Duragen has the highest incidence of CSF leaks in CMI surgeries. But this is not all, since Duragen also
elicits strong local inflammatory reactions, which result in massive arachnoid adhesions, and aseptic meningitis (inflammation of the
CSF).
Gore-Tex patches (Preclude) are synthetic. They generate less subdural scar and adhesions, and have a lesser incidence of CSF leaks,
when compared to Duragen. These patches are not favored among the top CMI experts, due to their stiffness: stiff materials are not
easy to stitch, and to tailor to the proper shape.
Another duraplasty technique is... the lack of it! A (very) few neurosurgeons nationwide leave the dura open at the end of CMI
surgery. This is the way the dura is left at the end of surgeries for tumor removal in the posterior fossa. This solution was
suggested a long time ago by Dr Williams, one of the pioneers of CMI/SM, in the face of the frustrating recurrence of CSF leaks
following standard Duraplasties. Leaving the dura open, creates an intentional doctor-induced CSF leak, with the consequent
formation of a Pseudomeningocele (a collection of CSF outside the limits of the dura, beneath the skin and the muscles). What is
the rationale behind this choice? The advocates of this technique state that whenever a CSF leak occurs at the end of a standard
duraplasty, the CSF has an easy way going out from the small holes through which it usually occurs, but has a tough time coming
back in (= a valve mechanism). Leaving the dura open, the CSF can flow back and forth, like a tide. But, CSF does not belong
there, and aseptic meningitis is the consequence (aseptic meningitis is an inflammatory reaction within the CSF). And if some
CSF seeps through the skin suture line, bacteria swim inwards, and bacterial meningitis can occur; in this case, the defensive
barrier of the dura is non-existent, and the infection can blaze within the posterior fossa without obstacles. Plus, CMI patients
have raised CSF pressure, which causes larger Pseudomeningocele collections than normally expected. To top it all off, aseptic
meningitis further increases the CSF pressure, increasing the size and tension of the Pseudomeningocele.
Back to Top
More Information on Duraplasty
- Duragen (compressed collagen)
- Alloderm (skin derivative)
- Goretex (synthetic)
- Fascia lata (the wrap around the thigh muscle)
- Bovine pericardium (membrane surrounding the cow's heart)
- Cadaveric dura (self explanatory)
- Pericranium (layer between skin and bone)
These are the materials used for Duraplasties (DP) in CMI. There is no standard of care for DP in CMI surgery in the US. Different
Neurosurgeons will use different DP materials.
The main goal of the DP is to provide a wider space at the craniocervical junction. The main drawback of the DP is the risk of CSF
leakage, which often requires a re-operation. According to Colleagues from a prestigious Ivy League institution, the risk of
re-operation to fix a CSF leakage whenever a DP is applied after opening BOTH the dura AND the arachnoid is 8% (= almost one in ten).
It is because of this specific risk that:
- Many neurosurgeons do not open the dura
- Many neurosurgeons open the dura, but not the arachnoid (= a thin membrane below containing the CSF)
- A (very) few neurosurgeons open the dura and the arachnoid, but do not apply a DP
When both the dura and the arachnoid are opened, the CMI surgery has the chance to be more effective, opening the door for a direct
manipulation of the local anatomical structures (tonsils, arachnoid bands, adhesions, etc.).
The main dilemma faced by the surgeon is whether being more aggressive (= opening dura AND arachnoid) and therefore achieving a
better outcome; or more safe and therefore minimizing the risks of CSF leakage (which decrease dramatically when the arachnoid is
left closed).
The choice of the dural material used for the DP heavily depends on this decision.
Back to Top
"FACE ON FIRE" Symptom
Paolo Bolognese, MD
The spectrum of symptoms described in this streak of postings is
probably secondary to the mechanical distortions of a nervous center
located in the lowest part of the brainstem: it is called spinal
trigeminal nucleus and it is located in the medulla.
This nucleus is very close to the cerebellar tonsils, and receives
sensory information's regarding light touch, pain, and temperature from
the same side of the face. If the nucleus is "tickled", it can generate strange sensations of
burning, aching, or numbness around the face.
The nucleus can be "bothered" by tumors, strokes, MS, cerebellar
tonsils, or by the tip of a wobbly (or retroflexed) odontoid.
Back to Top
Halo Hints By: Kathleen Grigg
PRE SURGERY:
Line up an orthopedic surgeon in your area that is willing to do halo adjustments and infection care as needed.
See if your insurance covers in home health care. Having a visiting nurse come at least once a week, along with an aid helps
tremendously. They keep any eye on the pin sites, and will do things like wash your hair, make your bed… Have this in place before
you come home.
Mental health care may also be provided in home. Quite often after major surgery depression can become an issue, so check into this
with your insurance.
Some people find it is more comfortable to sleep in a hospital bed. Find out if your insurance will cover that expense. You can
always order it when you return home. Some find sleeping in their own bed comfortable.
Stock your medicine cabinet with peroxide, rubbing alcohol, sterile water and sterile wooden tipped Q-tips. You can ask your
local pharmacy about these.
Buy some loose fitting clothing for your upper body, something with a large neck. Making some minor alterations will also help.
Take clothing with you to the hospital that can be worn under the halo vest. You can make your own, or buy it on line:
http://www.haloclothes.com/
Finding a sleeveless garment that fits also helps. There are fabrics that can be found made by Cool Max:
http://coolmax.invista.com/ This material wicks away sweat and is
a nice barrier between you and the halo jacket. Another brand is by Under Armour,
http://www.underarmour.com/ By buying a sleeveless shirt, you can cut
one shoulder, put Velcro on that shoulder and step into it, pulling it up under your vest. This can be washed, and helps to keep
things fresh.
Having a light weight camp towel on hand is nice. Cleaning under the vest will help keep your skin from breaking down. A
chamois cloth works well. You will receive halo care instructions in the hospital, and more hints are under "while in halo".
WHILE IN HALO:
While in the halo avoid strenuous physical efforts and any activity that could rock or bend the bars.
Having someone around the house for the first week or two is beneficial, but not essential. Keeping things picked up off the
floor alleviates tripping. You will have an adjustment time, but after a couple of weeks on familiar ground, you will be able to
do almost everything you did prior to halo.
You will be given a booklet discussing halo care. The pin sites should be cleaned 2-4x a day with a mixture of 50% peroxide and
50% sterile water. Using the sterile Q tip to clean. Nurses will show the proper way to do this while you are in the hospital.
Clean under your vest once a day. Use alcohol every third day, and just plain water the other two days, no soap, lotions, or powder.
Using alcohol every day would dry out your skin and cause itching. By using the chamois cloth you can feed it through one side and
out the other, gently pull it back and forth against the skin.
Washing your hair at the kitchen sick is probably the easiest way to clean your hair. Use the kitchen hose, and have someone else
clean your hair for you. If you are short, get a small step stool to stand on. Keep a towel around your neck to keep the vest dry.
Having your hair cut short helps with post op care. There is also a sink device that you can lay on the bed with your head in the
sink, and a hose that will drain into a bucket on the floor. Ask a local beauty supply for this.
If you live in an area that walking is safe, try to get out for a short walk most days. Using a walking stick will help with depth
perception problems. If you can't walk outside, at least get out into your lawn and walk around the lawn.
AFTER HALO:
You will be instructed on what to expect next. Normally a short course of physical therapy with light massage is ordered.
You will more than likely go into a collar or CTO for at least a month after the halo.
While you are in your halo, it is a good time to allow people to pamper you, make meals, and clean your house…. Take family,
friends, and other people's offer to help. It is a great time to catch up on those books that you have wanted to read.
Have fun with your halo. Decorate it with stickers, or what ever makes you happy. Living with a halo is not as bad as it appears.
Laughter will help the time go faster.
Back to Top
Invasive cervical traction description
Application of Gardner-Wells Tongs (CPT code 20660)
The Chiari Institute evaluates a substantial number of patients
with Chiari I malformations, an abnormality of the skull
base wherein tere is a limitation of posterior cranial
compartment necessary to accommodate the normal brainstem
and cerebellum. This leads to displacement of the cerebellar
tonsils into the foramen magnum creating a restriction
of normal, pulsatile spinal fluid outflow from the intracranial
compartment. This circumstance can cause severe occipital
headache and brainstem symptoms including balance difficulty,
dizziness, swallowing problems, sleep apnea, cardiac arrhythmia,
autonomic instability, visual disturbances, and limb numbness
and pains.
This condition can be seriously aggravated by head and neck trauma and certain hereditary connective tissue diseases
(e.g. Ehlers-Danlos syndrome) characterized by ligament laxity. An important clinical feature in these patients is their beneficial
response to cervical traction, which is applied with standard strap and pulley equipment used for physical therapy and/or home use.
This presents a possible option for surgical treatment in the performance of a cranio-cervical fusion using internal fixation and
fusion with Danek system bars and screws. This is a permanent and significant intervention with a number of acute and chronic
surgical risks.
In the selection of patients in anticipation of such a surgical procedure, patients are next evaluated with the application of
invasive cervical traction to assess, at the bedside, their clinical and physical response to the graded application of 7 to 25 lbs
of cervical traction. The information gained thereby is then used to 1) advocate surgical treatment and 2) at the time of surgery,
position the patient in the optimal extracted position for permanent cranio-cervical fusion.
The application of Gardner-Wells tongs for invasive cervical traction is a surgical procedure performed under MAC anesthesia.
ANESTHESIA:
Monitored anesthesia care (MAC) is a specific anesthesia service in which an anesthesiologist has been requested to participate
in the care of a patient undergoing a diagnostic or therapeutic procedure.
Monitored anesthesia care includes all aspects of anesthesia care - a pre-procedure visit, intra-procedure care and post-procedure
anesthesia management.
During monitored anesthesia care, the anesthesiologist or a member of the anesthesia care team provides a number of specific
services, including but not limited to:
- Monitoring of vital signs, maintenance of the patient's airway and continual evaluation of vital functions
- Diagnosis and treatment of clinical problems, which occur during the procedure
- Administration of sedatives, analgesics, hypnotics, anesthetic agents or other medications as necessary to ensure patient
- Provision of other medical services as needed to accomplish the safe completion of the procedure
Monitored anesthesia care often includes the administration of doses of medications for which the loss of normal protective
reflexes or loss of consciousness is likely.
Monitored anesthesia care refers to those clinical situations in which the patient remains able to protect the airway for the
majority of the procedure. If, for an extended period of time, the patient is rendered unconscious and/or loses normal protective
reflexes, then anesthesia care shall be considered a general anesthetic."
OPERATIVE PROCEDURE:
The patient is placed on the operating table in the supine position. An intravenous line is implanted. After satisfactory MAC
anesthesia had been established, two small areas of the scalp immediately above the pinna of each ear are prepared with triple
applications of povidone and iodine. Both areas of the scalp are infiltrated with 5cc of Marcaine 0.5% solution with epinephrine.
After satisfactory local anesthesia has taken effect, Gardner-Wells tongs are brought to the head of the table. The cranial pins are
inserted in the scalp 1.5cm above the highest point of the pinna each ear. The pins are advanced through the outer cortex of the
skull into the diploe. The pins are then secured in place with locking screws.
The patient is then transferred to a hospital bed with an overhead frame and pulley system. Invasive cervical traction is usually
applied starting at seven pounds extraction weight and increased with detailed clinical and neurological testing as necessary.
OBJECTIVE:
During the application of traction at varying weight loads the patient is observed for critical functional and objective
neurological parameters (e.g. headache, nystagmus, dizziness, dysphagia, and dysphonia, sensation in the arms and legs, and
corticospinal tract signs (i.e. hyperreflexia). In addition, a fluoroscopic assessment is made of the degree of closed reduction
of odontoid angle with respect to the clivus and foramen magnum. Continuing at 6 hour intervals, the patient is reassessed for a
critical, individually chosen, subset of parameters with application and relaxation of specified traction weights.
In the case of negative testing the patient is discharged the following day or prepared for appropriate surgical management within
24 to 48 hours.
Back to Top
Local surgeon vs. specialist
Dr. Bolognese
A little while ago, the AANS estimated that around 3,500 Chiari operations were performed every year in the US. This number has
probably increased since that statement. The precise number of Chiari patients in the nation is unknown.
There are about 4,000 practicing neurosurgeons in the US. There are a handful of true CMI experts in the Country (with 20 cases
per year you become a recognized international expert). At the moment, there are no more than 10-12 true CMI experts. American
Chiarians are lucky, since 90% of the top true CMI experts in the world are practicing in this Country. Then there is a larger
ring of "CMI-savvy" neurosurgeons (= they know about the disease more than the average practitioner, and they do a handful of
cases per year). The last group is made by the "General Neurosurgeons", who have limited knowledge about CMI and operate on 2-3
cases per year.
Flat out, a number of practitioners lie at the time of the consultation
about the number of the CMI surgeries that they have performed, to avoid losing a potential case.
Currently, the bulk of the CMI surgeries in the US are performed by
"General Neurosurgeons". Take in account that the people on WACMA are just a part of the total CMI population, in case you want
to refer to previous informal polls which had been run on this board.
The number of "CMI-savvy" neurosurgeons is currently expanding, as a
relfex to the growth of the market of the CMI patients (= more patients
are getting diagnosed).
There is limited official information about the number of CMI surgeries
performed by the true CMI experts. TCI is the only center officially
disclosing numbers regarding surgical activity, with 386 CMI-related
surgeries in the year 2006. In the group of the true CMI experts, the runner-ups among the heavy
hitters are Dr Oro' and Dr Frim, with a former estimated surgical
activity measurable around 80 cases per year. Dr Batzdorf is in the
process of publishing the data of his lifetime CMI surgical activity.
Among the true CMI experts, TCI is the only real institution only
devoted to the diagnosis and management of CMI and related disorders, if
for institution we define a group made by more than one physician who
work together under the same roof and label (the members of TCI are: Dr
Milhorat, Dr Roonprapunt, Dr Nishikawa, Dr Kula, Dr Pinkhasova, Dr Mora, Dr Chen, and me). All the other true CMI experts
practice by themselves within academic institutions and devote
only part of their professional time to CMI.
Out of the 3,500 total CMI operations, a sizeable fraction is represented by REDO surgeries (= a re-operation on a former
surgery which had failed due to complications, incomplete execution, or unrecognized associated pathologies). Most of the
REDO surgeries are tackled by true CMI experts. 49% of the surgeries performed at TCI are REDO's. Not all the CMI experts
operate on REDO's. Complex REDO's are performed by very few of these experts.
Insurance limitations often prevent patients from getting surgeries by
the hands of true CMI experts.
Simple forms of CMI, in which the anatomy is simple, and there are no
associated pathologies, are well within the surgical abilities of a
"General Neurosurgeon". More complex cases should be performed by people with more experience. Difficult cases or cases in
which other relevant pathologies (i.e. EDS) are associated should be performed only by true CMI experts, due to the intrinsic
high risk of complications.
There is no national (or international) standard about how a CMI surgery should be performed. What is available is a spectrum
of surgical procedures, ranging from easy/conservative (bone opening only), to difficult/aggressive (all the way up to tonsillar
shrinking and brainstem dissection). The aggressive versions of CMI surgery should be performed by people with experience.
Whenever a syrinx is present, a more difficult/aggressive surgery should
be chosen.
The risk of complications is linked to a number of factors:
1. complexity of the anatomy
2. associated pathologies
3. if the case is a REDO
4. degree of complexity of the surgery
5. experience and skill of the surgeon
6. intraoperative booby traps (unexpected vascular anomalies, anatomical
variants of the brainstem, cranial lacunae, etc.)
A classic example is the incidence of CSF leakage. If both the dura and the arachnoid are opened, the reported national
average incidence of CSF leakage is 8%. The risk of CSF leakage increases if a General Neurosurgeon (who performs 2-3 CMI
cases per year) is involved in the case. The risk of leakage triples if the patient has EDS, because of the thin and
fragile dura (just to have an idea, try to stitch together two pieces of wet toilet paper). Due to the full immersion in
CMI problems, the risk of CSF leakage at TCI since August 2003 has been 0.2%.
If the CMI is associated to severe forms of basilar invagination, only
TCI and Dr Menezes have the know-how and the experience to manage these
cases.
Recent findings are showing that the diagnosis of CMI is actually
covering a garden variety of conditions, which have tonsillar herniation in common. On the TCI database (which is probably
biased since complex cases tend to come to us by default) occult cord tethering is present in 12% of CMI patients, connective
tissue disorders like EDS are present in 18% of the cases. The more we know the more complex our diagnostic and therapeutic
procedures are becoming.
CONCLUSIONS:
If you cannot be operated by a true Chiari expert, at least try to get
his opinion, to check if your case can be safely done by your local
Neurosurgeon. If the case has unrecognized technical wrinkles, anatomical booby traps, or unrecognized associated pathologies,
the surgery should be performed by somebody with more experience, to decrease the probability of complications. The more complex
the case, the more you need a true CMI expert. Many of the CMI cases are not complex. The higher the experience of your surgeon,
the lower the incidence of complications. The higher the degree of complexity of the surgery, the higher the incidence of
complications. True CMI experts can perform highly complicated cases, with low incidence of complications. When CMI and a syrinx
are present, more aggressive versions of the decompressive surgery should be used.
The insurance companies are in for the profit. A patient with complications and reoperations costs more than a patient who has
been operated out-of-network but only once. If you make the insurance company aware that your case has a high potential risk of
postoperative complications and future reoperations, you will have an argument to have your case performed by an out-of-network expert.
Back to Top
Not all chiarians are created equal
Dr. Bolognese
What is a Chiari I Malformation?
In a nutshell, it is a box which is too small for its contents.
The posterior fossa is the box. Its contents are: brainstem, cerebellum (with its tonsils), cranial nerves, blood vessels, and
CSF pathways.
Chiari patients can be divided in different categories. The first distinction is between congenital and acquired forms of Chiari.
Congenital means present at birth, while acquired means absent at birth but developing later.
So far, so good. Now the complicated part kicks in.
The congenital forms can be gene-related or non-gene-related.
Gene-related can be pure Chiari I Malformation, craniosynostosis with
associated Chiari I Malformation, or other cranio-facial diseases with an associated Chiari I component. Non-gene-related: a
trauma at birth (i.e. forceps) can indent the occipital bone causing a Chiari I.
Gene-related congenital forms tend to run in the families. These forms
mainly affect white women. (The gene will be identified pretty soon, and with genetically engineering Chiari neurosurgeons will
be out of a job.) These forms tend to be associated with anomalies of the upper cervical spine. Curiously, patients with
gene-related congenital Chiari I tend to look alike, like sisters separated at birth.
Acquired forms. Anything producing a discrepancy between the box and its contents will create a tonsillar herniation.
Funny factoid: when Dr. Chiari described in an article the Chiari I Malformation, the patients he presented were NOT Chiarians,
but people with massive hydrocephalus which were displacing their tonsils out of the limits of the skull after running out of
space. Causes of acquired Chiari I can be many: tumors, hydrocephalus, etc.
To confuse the issue even more, most of the Chiarians experience excellent health until the unfortunate day in which they suffer a
significant trauma, after which the symptoms start. Did the trauma cause the Chiari? In most of the instances, the trauma did not
cause the Chiari I, but tipped it over a precarious balance: the famous last straw which broke the camel's back.
The other side of the coin is what follows: there are a lot of Chiarians out there that are asymptomatic and will remain
asymptomatic for life.
Therefore: not all the Chiarians are created equal...
Back to Top
Information on Duraplasty Materials
Dr. Bolognese
Duraplasties for CMI surgery are in a different ballpark when compared to the duraplasties performed in other
neurosurgical procedures. In all the other parts of the skull, gravity is working in your favor: the dura is on top,
while the CSF and the brain are on the bottom. In the posterior fossa, it is the opposite: the cerebellum and the CSF are
on top, while the dura is on the bottom. Example: if your neighbor has a broken and flooded toilet, do you prefer living in
the apartment upstairs from his, or downstairs? Water (and any other fluidish material) tends to run downhill...
Second disadvantage: CSF pressure tends to be higher than normal in CMI patients, which can be a problem for recent suture
lines around the perimeter of duraplasties.
Different materials are used for duraplasties in neurosurgery. Not all of them are good for CMI surgery.
The worst is Duragen. It is made of reabsorbable suture material, woven together like a carpet. It is supposed to act as
a matrix for the growth of dural cells form the periphery of the patch. But, in the posterior fossa, the CSF seeps through the
Duragen, creating big gaps early on, way before any dural cell has made it there. Bottom line: the Duragen works anywhere else in
the skull, but not in posterior fossa. Duragen has the highest incidence of CSF leaks in CMI surgeries. But this is not all, since
Duragen also elicits strong local inflammatory reactions, which result in massive arachnoid adhesions, and aseptic meningitis
(inflammation of the CSF).
Gore-Tex patches (Preclude) are synthetic. They generate less subdural scar and adhesions, and have a lesser incidence of CSF leaks,
when compared to Duragen. These patches are not favored among the top CMI experts, due to their stiffness: stiff materials are not
easy to stitch, and to tailor to the proper shape.
Another duraplasty technique is... the lack of it! A (very) few neurosurgeons nationwide leave the dura open at the end of
CMI surgery. This is the way the dura is left at the end of surgeries for tumor removal in the posterior fossa. This solution
was suggested a long time ago by Dr Williams, one of the pioneers of CMI/SM, in the face of the frustrating recurrence of CSF
leaks following standard Duraplasties. Leaving the dura open, creates an intentional doctor-induced CSF leak, with the consequent
formation of a Pseudomeningocele (a collection of CSF outside the limits of the dura, beneath the skin and the muscles). What is the
rationale behind this choice? The advocates of this technique state that whenever a CSF leak occurs at the end of a standard
duraplasty, the CSF has an easy way going out from the small holes through which it usually occurs, but has a tough time coming
back in (= a valve mechanism). Leaving the dura open, the CSF can flow back and forth, like a tide. But, CSF does not belong there,
and aseptic meningitis is the consequence (aseptic meningitis is an inflammatory reaction within the CSF). And if some CSF seeps
through the skin suture line, bacteria swim inwards, and bacterial meningitis can occur; in this case, the defensive barrier of the
dura is non-existent, and the infection can blaze within the posterior fossa without obstacles. Plus, CMI patients have raised CSF
pressure, which causes larger Pseudomeningocele collections than normally expected. To top it all off, aseptic meningitis further
increases the CSF pressure, increasing the size and tension of the Pseudomeningocele.
Back to Top
Nerve Blocks: Are They Safe For Chiarians?
Dr. John Oro
We have used nerve blocks for persons with the Chiari malformation that also have occipital neuralgia. We have not seen any problems
with the blocks and, when done appropriately, they should not increase the herniation. Blocks in persons that have already had a
Chiari decompression take special care and the possible risks should be discussed with the specialists performing the blocks. To
date, we have not seen any side effects from the blocks in persons that have already had a decompression.
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Glyconeutrients
Dr. Bolognese
Gut and brain; they are so distant from each other, yet so close;
the brain can influence the gut; emotions can give you diarrhea, gastritis, ulcers, irritable bowel syndrome, hyprermobility,
gastroparesis, constipation, and other oh-so-comfortable conditions; the gut can influence the brain as well; everybody knows
how a "sugar high" feels like; a heavy meal can be as disruptive for thinking and concentration as hypoglicemia; the way you feel
after a fast-food binge is not the same you feel after a home cooked-meal; spicy food can increase pain.
Food allergies and food intolerances can negatively affect the brain function via bloodborne toxins; dietary chemical additives
and food preservatives modify the brain function as well: just take a look at your children's behaviour after a bottle of those
blue or red artificial energy drinks; imbalanced diets and vitamin deprivation can disrupt body and brain, with long lasting
consequences.
The gut is also an important station of the body immunity; the perturbation of its balance can produce immunitary dysfunctions,
and sometimes diseases.
Chiari pts have often allergies, to drugs, environmental stimuli, and food; very often these allergies increase in number as
life goes on, with Medic Alert bracelets containing the equivalent of War and Peace; food allergies alter the gut and its flora,
affect the immunitary system, distort the brain performance, and increase the intensity of pain; at TCI, we had found an
intriguingly high prevalence of pts with suspected or confirmed celiac disease; in celiac disease, the pts are allergic to
gluten, and the peptides released in the body have toxic effects on the entire body (including gut and brain).
American people, in general, do not know how to eat well; they tend to exaggerate in quantity (USA is the fattest country in the
world), and proportions among nutrients (vegan diets with no proteins, Atkins diets with no carbs, etc.); obesity tends to increase
the CSF pressure, thus making CMI symptoms worse; CMI pts tend to have dysfunction of the gut mediated by mechanical distortions of
the vagus nerve; in CMI pts, pituitary gland and hypothalamus feel the effects of elevated CSF pressure, with deleterious effects on
both the hormonal system and the metabolic "homeostatic balance" of the body (and now go and search around
What it means);
Bottom line:
1. For the time being, CMI pts should eat a balanced diet, and avoid
obesity
2. At TCI, we will investigate the relation between CMI and celiac disease, with future eventual specific dietary
recommendations (so, stay tuned)
3. Focus on your body: if after eating a certain food, you feel "strange", "weird", or "high", try to avoid it in the future
remember what grandma used to say about vegetables and an apple per day
4. Favor organic food and homemade cooking, over the other garbage
5. And for one time in your life, do something un-American (in your eating habits): be moderate
Back to Top
Swallowing Hints
Kathleen Grigg
When you swallow, tip your chin down towards your chest. This works wonders
on getting food down.
Take small bites, and don't talk when you eat. This one always sneaks back
with me, and before you know it I have food stuck and I'm choking on fluids.
If something gets stuck, try gently holding your breath for as long as you
are comfortable. Do not hold your breath too long, this will increase your
intracranial pressure. About 90% of the time, the food will go down for me.
If it doesn't, hold your breath again, while sitting, pull up on the bottom
of your chair. Don't hold your breath until you get a headache!
When drinking, drink through a flexible neck straw. Place the straw just to
the front of your teeth; don't put it past your teeth. Tilt your head down
when you drink. This has almost alleviated any aspiration that takes place
for me. It really helps when you take your pills to use a straw.
Another thing that helps with pills is putting them in a tablespoon of
applesauce then swallow that.
Pretty soon these techniques will become part of your eating habits.
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"The Chiari Book"
"The Chiari Book - A Guide for Patients, Families and Health Care Providers".
Written By: Dr. John Oro and Diane Mueller
This is a great book for handing to family members, friends or health care
providers on Chiari and Syringomyelia. Because it is written by a physician
and a nurse practitioner who both specialize in the conditions, it may be well
received by other health care folks on your team.
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Where can I find more information on Syringomyelia?
Conquer Chiari has very detailed questions and answers on Syringomyelia.
Information can be found Here
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