Thanks for you comment Dr. F. I am going to jump in and ask, what can realistically be done for Chari problems?
Thanks Nigel
CCSVI and CCVBP
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uprightdoc
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Hello NZer1,
There are many variables in Chiari malformations such as the design of the base of the skull (platybasia and hypoplasia), scoliosis and tethered cords syndromes that determine the best approach.
Certain cases of Chiari malformation can be helped with upper cervical adjustments and pelivic alignment. Most cases are currently corrected with atlantooccipital stabilization, decompression and duraplasty. What they do in shave down the base of the skull and posterior arch of Atlas (C1) to created more space for the descended cerebellum. Stabilization plates are then attached to the skull and C1 with screws due to subsequent weakness of the bones caused by the surgery. Duraplasty cuts open the dura mater to expand it's space as an alternative or additional procedure for decompression. The opening is then closed with a graft patch. Some cases due to tethered cords are corrected by cutting the filum terminale attachment of the cord to the coccyx (tailbone) to relieve the downward traction causing the Chiari.
There are many variables in Chiari malformations such as the design of the base of the skull (platybasia and hypoplasia), scoliosis and tethered cords syndromes that determine the best approach.
Certain cases of Chiari malformation can be helped with upper cervical adjustments and pelivic alignment. Most cases are currently corrected with atlantooccipital stabilization, decompression and duraplasty. What they do in shave down the base of the skull and posterior arch of Atlas (C1) to created more space for the descended cerebellum. Stabilization plates are then attached to the skull and C1 with screws due to subsequent weakness of the bones caused by the surgery. Duraplasty cuts open the dura mater to expand it's space as an alternative or additional procedure for decompression. The opening is then closed with a graft patch. Some cases due to tethered cords are corrected by cutting the filum terminale attachment of the cord to the coccyx (tailbone) to relieve the downward traction causing the Chiari.
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uprightdoc
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They actually have a fairly high success rate when they follow strict criteria. Some people have major herniations of the brainstem and cerebellum into the foramen magnum and minimal or no problems. On the other hand, some people have Chiari 1 or Chiari zero malformations and major problems. Some people also have functional Chiari malformations due to platybasia (flatter) base of the skull. Some Chiari 1 and Chiari zeros may benefit from specific upper cervical and pelvic alignment.
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uprightdoc
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Nigel,
As you know, I suspect you have a mild functional Chiari due to the flexion strain position of your neck. Flexion of the neck pulls the brainstem tighter toward the clivus of the base of the skull. Flexion of the neck also tightens the cord and nerve roots pulling them toward the bones of the spinal canal and intervertebral foramen. Consequently, it can produce a Lehermitte's sign in people with decreased tolerances due to spondylosis (degeneration), scoliosis (curvature) or stenosis (narrowing) of the spine.
As you know, I suspect you have a mild functional Chiari due to the flexion strain position of your neck. Flexion of the neck pulls the brainstem tighter toward the clivus of the base of the skull. Flexion of the neck also tightens the cord and nerve roots pulling them toward the bones of the spinal canal and intervertebral foramen. Consequently, it can produce a Lehermitte's sign in people with decreased tolerances due to spondylosis (degeneration), scoliosis (curvature) or stenosis (narrowing) of the spine.
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uprightdoc
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Hello Rokkit,
Not directly but it depends on what caused the CCSVI. The thoracic spine (T7-T9) has less tolerance for increased pressure due to stiffness in its design caused by the rib attachments. Consequently, the cord can't give as much or move in the spinal canal.
Degenerative changes and curvatures of the thoracic spine can affect the CSF pathways of the spinal canal like bending or pinching a garden hose. You bend or pinch the hose and you decrease the flow coming out but it jets out under greater pressure. Likewise CSF jets thorough constrictions in the brain and cord.
The soft spots on an infant's head are called fontanelles, which means fountain. They were so named because early physicians could feel CSF pulsations in the brain. Those pulsations scour indentations in the roof of the adult skull over the course of a lifetime. When strong enough they can cause syrinxes (cavities) in the central canal of the cord.
Not directly but it depends on what caused the CCSVI. The thoracic spine (T7-T9) has less tolerance for increased pressure due to stiffness in its design caused by the rib attachments. Consequently, the cord can't give as much or move in the spinal canal.
Degenerative changes and curvatures of the thoracic spine can affect the CSF pathways of the spinal canal like bending or pinching a garden hose. You bend or pinch the hose and you decrease the flow coming out but it jets out under greater pressure. Likewise CSF jets thorough constrictions in the brain and cord.
The soft spots on an infant's head are called fontanelles, which means fountain. They were so named because early physicians could feel CSF pulsations in the brain. Those pulsations scour indentations in the roof of the adult skull over the course of a lifetime. When strong enough they can cause syrinxes (cavities) in the central canal of the cord.
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DrKoontzDC
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I wanted to jump in here since you brought up platybasia and mention basilar invagination which is associated with platybasia & Chiari malformations. Basilar invagination is when the tip of the odontoid process begins to encroach in to the base of the skull above the foramen magnum. This encroachment causes stenosis of the foramen magnum and puts pressure on the brainstem with the possibility of causing a whole host of neurological problems such as but not limited to syringomyelia and obstructive hydrocephalus and sometimes even death.uprightdoc wrote:Some people also have functional Chiari malformations due to platybasia (flatter) base of the skull.
Basilar invagination can also be known as basilar impression. The difference between the two is that invagination is a congenital problem, meaning the person was born with it and impression is an acquired problem, meaning that it developed after birth. I thought to bring this up because it is just one more thing that can disrupt CSF flow and cause neurological problems such as syringomyelia which Rokkit asked about previously.
Rokkit, have you had cervical x-rays taken? If so, if you could find a way to post them here or send them to either myself or Dr. Flanagan it would be a great help so we can get a better idea as to what's going on with your neck. Furthermore I'd highly suggest for you to see an Upper Cervical Chiropractor for those x-rays and to get adjusted.
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uprightdoc
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Hello Dr. Koontz,
I have some terrific pictures of all the pathological and artificially deformed skulls I studied at the museum. The pictures were taken around 1985 or so and are on slides I used for doing presentations. I would like to eventually digitize them.
The cleidocraniodysostosis specimen I studied has basilar invagination due to poor transformation of cartilage to bone. The Paget's specimen has basilar impression due to endocrine dysfunction causing softening and remodeling of the bones of the base of the skull. The weight of the skull on the weakned bone substrate causes the base to cave in over the spine in Pagets disease.
I have some terrific pictures of all the pathological and artificially deformed skulls I studied at the museum. The pictures were taken around 1985 or so and are on slides I used for doing presentations. I would like to eventually digitize them.
The cleidocraniodysostosis specimen I studied has basilar invagination due to poor transformation of cartilage to bone. The Paget's specimen has basilar impression due to endocrine dysfunction causing softening and remodeling of the bones of the base of the skull. The weight of the skull on the weakned bone substrate causes the base to cave in over the spine in Pagets disease.
Hi Everyone,
Let me see if I can catch up a bit!
Neava: Your symptoms are almost exactly like mine, and many others. (Somehow that is weirdly comforting, isn't it?). One of my theories that is panning out is that we have poor CSF outflow (for a few different reasons). For me, a virus -- or more likely the viral antibodies -- crossed my lousy (EDS) blood brain barrier and messed up the arachnoid villi (what we use to drain CSF from our brain). I could write a novel on this, but I'll get to the point. Please talk to your doctor about a couple of days trial with Diamox (which decreases the CSF flow and causes a slight increase in drainage). Honestly, if you are having that headache in the back of your head, going down your neck to the top of your shoulders, take about 250mg of Diamox and your headache will be GONE the next morning. If not, I'll eat my cervical collar.
Many of these symptoms overlap with Chiari (do you have Chiari?) and for good reason. Chiari can also block the outflow of CSF and can be treated with Diamox. What has puzzled so many docs is that we can have all of the symptoms of Chiari without an MRI to verify Chiari! That's where other reasons for poor drainage come in. Does that make sense?
It has changed my life, my son's life, and a handful of other patients dealing with similar symptoms. If you have EDS AND Chiari, you can have ADDITIONAL symptoms (jeez) of anterior brain stem damage (again with no image verification). We can talk about that, too.
Diamox. 250mg at bed time. OK? (BTW, this drug is inexpensive, has been around forever, and docs write prescriptions for it for ski trips to prevent altitude sickness (how I used to use it)). As an eye doc, I used it for acute angle-closure glaucoma so I just happened to have a bottle of it around. Don't let your doctor be afraid of it - especially for a couple of days!
I just saw that Dr. Flanagan said you had Chiari? How big is it? Chiari or no Chiari, I would try the Diamox. You'll see everywhere on the internet that it is used for Chiari. Either way, I betcha' you'll love it. Here's one site:
http://www.answerbag.com/q_view/998889
Please keep me posted, OK?
Let me see if I can catch up a bit!
Neava: Your symptoms are almost exactly like mine, and many others. (Somehow that is weirdly comforting, isn't it?). One of my theories that is panning out is that we have poor CSF outflow (for a few different reasons). For me, a virus -- or more likely the viral antibodies -- crossed my lousy (EDS) blood brain barrier and messed up the arachnoid villi (what we use to drain CSF from our brain). I could write a novel on this, but I'll get to the point. Please talk to your doctor about a couple of days trial with Diamox (which decreases the CSF flow and causes a slight increase in drainage). Honestly, if you are having that headache in the back of your head, going down your neck to the top of your shoulders, take about 250mg of Diamox and your headache will be GONE the next morning. If not, I'll eat my cervical collar.
Many of these symptoms overlap with Chiari (do you have Chiari?) and for good reason. Chiari can also block the outflow of CSF and can be treated with Diamox. What has puzzled so many docs is that we can have all of the symptoms of Chiari without an MRI to verify Chiari! That's where other reasons for poor drainage come in. Does that make sense?
It has changed my life, my son's life, and a handful of other patients dealing with similar symptoms. If you have EDS AND Chiari, you can have ADDITIONAL symptoms (jeez) of anterior brain stem damage (again with no image verification). We can talk about that, too.
Diamox. 250mg at bed time. OK? (BTW, this drug is inexpensive, has been around forever, and docs write prescriptions for it for ski trips to prevent altitude sickness (how I used to use it)). As an eye doc, I used it for acute angle-closure glaucoma so I just happened to have a bottle of it around. Don't let your doctor be afraid of it - especially for a couple of days!
I just saw that Dr. Flanagan said you had Chiari? How big is it? Chiari or no Chiari, I would try the Diamox. You'll see everywhere on the internet that it is used for Chiari. Either way, I betcha' you'll love it. Here's one site:
http://www.answerbag.com/q_view/998889
Please keep me posted, OK?
Dr. Diana
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
Hi Nigel!
Somewhere here, you asked about other ways to check the ICP. The only other way to do it is to tap into the top of your skull (and I asked for it -- the answer was 'no'). Docs use that method in cases of head crush injuries, etc. There is a high risk of infection.
But low pressure headaches post LP when the LP doesn't close are horrible. With EDS, we don't heal well, so if we MUST have an LP, we ask for the special tiny needles, we go ahead with a blood patch then and there, and stay horizontal twice as long as recommended. But I still have patients whose sites reopen even years later (again, those who don't heal well).
Most people do just fine with LP's, but if it is leaking enough to cause a headache when you become vertical, I would recommend NOT leaving the hospital until it stops, or they fix it.
I found that someone had a patent on an idea to measure changes in ICP with an instrument on the eardrum (remember that our ears hurt when our pressures are higher?). I wanted to call and ask them, "So, how's that patent coming?" but decided that was being pushy. ha. That is what we need, though.
Oh, and the latest on high intracranial pressure -- you don't always get the swollen optic nerve head ("papilledema"), especially if the pressure change isn't drastic. Sometimes we can tell if the ICP went up just by looking at a change in the venous pulse on the optic disc (if it was there before, and now isn't). And NPH (normal pressure hydrocephalus)? Docs have figured out that these patients DO have spikes of high pressure, usually at night time. LP's just don't usually "catch" it.
Research is moving fast!
Somewhere here, you asked about other ways to check the ICP. The only other way to do it is to tap into the top of your skull (and I asked for it -- the answer was 'no'). Docs use that method in cases of head crush injuries, etc. There is a high risk of infection.
But low pressure headaches post LP when the LP doesn't close are horrible. With EDS, we don't heal well, so if we MUST have an LP, we ask for the special tiny needles, we go ahead with a blood patch then and there, and stay horizontal twice as long as recommended. But I still have patients whose sites reopen even years later (again, those who don't heal well).
Most people do just fine with LP's, but if it is leaking enough to cause a headache when you become vertical, I would recommend NOT leaving the hospital until it stops, or they fix it.
I found that someone had a patent on an idea to measure changes in ICP with an instrument on the eardrum (remember that our ears hurt when our pressures are higher?). I wanted to call and ask them, "So, how's that patent coming?" but decided that was being pushy. ha. That is what we need, though.
Oh, and the latest on high intracranial pressure -- you don't always get the swollen optic nerve head ("papilledema"), especially if the pressure change isn't drastic. Sometimes we can tell if the ICP went up just by looking at a change in the venous pulse on the optic disc (if it was there before, and now isn't). And NPH (normal pressure hydrocephalus)? Docs have figured out that these patients DO have spikes of high pressure, usually at night time. LP's just don't usually "catch" it.
Research is moving fast!
Dr. Diana
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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uprightdoc
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Hello to all of you,
My problems with symptoms similar to many of you started in 2004 and degenerated fairly rapidly. it has been an interesting journey to say the least. While I am left with considerable orthopedic problems they are easy to deal with. My biggest concerns and the worst of my neurolgical problems, however, are gone, especially the wicked leg spasms, tremors, clonus, numbness, tingling and weakness. I have been sleeping soundly for quite awhile now. Consequently, I am feeling especially energetic. My second book is nearly complete and I am ready to finish it. The new website is also growing quickly despite stiff competition in field dominated by giants and I am just getting started. It's rewarding to see patients are getting the big picture.
To stay focused I will be disconnecting myself from this thread. Before I do, however, I would like to say it has been my pleasure to meet all of you and thank-you Spiros for inviting me. I will still be available through my blog and my website as well as by email.
Wishing you all the best in health,
Dr. Flanagan
My problems with symptoms similar to many of you started in 2004 and degenerated fairly rapidly. it has been an interesting journey to say the least. While I am left with considerable orthopedic problems they are easy to deal with. My biggest concerns and the worst of my neurolgical problems, however, are gone, especially the wicked leg spasms, tremors, clonus, numbness, tingling and weakness. I have been sleeping soundly for quite awhile now. Consequently, I am feeling especially energetic. My second book is nearly complete and I am ready to finish it. The new website is also growing quickly despite stiff competition in field dominated by giants and I am just getting started. It's rewarding to see patients are getting the big picture.
To stay focused I will be disconnecting myself from this thread. Before I do, however, I would like to say it has been my pleasure to meet all of you and thank-you Spiros for inviting me. I will still be available through my blog and my website as well as by email.
Wishing you all the best in health,
Dr. Flanagan
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blossom
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ccsvi
oh dr. flanagan i hate to see you leave this site. the circle of things with ccsvi you explaining and adviseing us while others read the journeys of some gave hope and help in directions that is part of this big circle. i feel you have helped many.
it was and is so neat and helpful to scroll down and see you here.
i know you have to do what you feel you have to do. and thank you for not leaving us high and dry. i for one will be following you and communicating. as i stated you are my mentor on this part of my journey.
it was and is so neat and helpful to scroll down and see you here.
i know you have to do what you feel you have to do. and thank you for not leaving us high and dry. i for one will be following you and communicating. as i stated you are my mentor on this part of my journey.
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uprightdoc
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