Hi doc,
Well, had some interesting meetings with a neuro today, who agreed that my case is pretty atypical/ she did several tests and concluded that it could be ms, but also other things.
Next step is a ms specialized centre, new mri's etc
I know the name of a good ms neuro at one of these centers, hope to get an appointment with her...
CCSVI and CCVBP
-
uprightdoc
- Family Elder
- Posts: 1995
- Joined: Thu Sep 30, 2010 2:00 pm
- Location: USA
- Contact:
Re: CCSVI and CCVBP
Hello Robert,
You definitely don't have definite MS. Whether it is definite MS or not at this point is a matter of medical semantics that seeks to pigeon hole patients into neat categories with names.
I can practically guarantee that what you do have is damage to the muscles and connective tissues of the craniocervical junction with misalignment and mechanical dysfunction resulting in faulty craniospinal hydrodynamics that is affecting the long long tracts of the cord among other things. The damage to the upper cervical spine was most likely caused by "heading the ball" in soccer.
A new MRI of the craniocervical junciton is definitely warrented and should include range of motion and CINE flow studies.
You definitely don't have definite MS. Whether it is definite MS or not at this point is a matter of medical semantics that seeks to pigeon hole patients into neat categories with names.
I can practically guarantee that what you do have is damage to the muscles and connective tissues of the craniocervical junction with misalignment and mechanical dysfunction resulting in faulty craniospinal hydrodynamics that is affecting the long long tracts of the cord among other things. The damage to the upper cervical spine was most likely caused by "heading the ball" in soccer.
A new MRI of the craniocervical junciton is definitely warrented and should include range of motion and CINE flow studies.
Re: CCSVI and CCVBP
thx,
i sincerly hope i can make an appointment with dr. de jong. A lot of ms patients are very positive about her...
i sincerly hope i can make an appointment with dr. de jong. A lot of ms patients are very positive about her...
-
uprightdoc
- Family Elder
- Posts: 1995
- Joined: Thu Sep 30, 2010 2:00 pm
- Location: USA
- Contact:
Re: CCSVI and CCVBP
As I mentioned previously, you should go to London to get an Upright and CINE MRI and have Professor Francis Smith look at the images. You want a radiologist with the right training and experience checking for damage to the dura mater, muscles and ligaments of the craniocervical junction.
Re: CCSVI and CCVBP
I know, i know....and it will probably be that way. But I want to give it a chance over here.uprightdoc wrote:As I mentioned previously, you should go to London to get an Upright and CINE MRI and have Professor Francis Smith look at the images. You want a radiologist with the right training and experience checking for damage to the dura mater, muscles and ligaments of the craniocervical junction.
Also; when dr smith finds all kinds of problems, what then? who is going to help me from there?
Re: CCSVI and CCVBP
" when dr smith finds all kinds of problems, what then? who is going to help me from there? "
Fantastic question, and even more important and impacting 'is any Medical Professional able to define the causes and offer treatment with confidence that improvements will occur"?
It seems that we as PwMS are bombarded with theories and opinions, offered treatments of varying costs and have no recourse.
If a Plumber is contracted to fix a leak and doesn't find the problem and cure the issue, or does more damage we have recourse, why don't we have recourse with the Medical Profession? And yes I know the standard justifications to deflect such a question!
What if px's said "enough", the system needs to adjust from what it is, and it may take time to get the best solution, trial and error but improvements to what is provided now!
Nigel
Fantastic question, and even more important and impacting 'is any Medical Professional able to define the causes and offer treatment with confidence that improvements will occur"?
It seems that we as PwMS are bombarded with theories and opinions, offered treatments of varying costs and have no recourse.
If a Plumber is contracted to fix a leak and doesn't find the problem and cure the issue, or does more damage we have recourse, why don't we have recourse with the Medical Profession? And yes I know the standard justifications to deflect such a question!
What if px's said "enough", the system needs to adjust from what it is, and it may take time to get the best solution, trial and error but improvements to what is provided now!
Nigel
Re: CCSVI and CCVBP
Thx Nigel,
Speaking to dutch neuro's /surgeons they laugh and offend/deny other thoughtts.
I will go to dr Smith, but hope to find the one dutch open minded neuro first that backs me up.
Maybe false hope, but i have to try....
Robert
Speaking to dutch neuro's /surgeons they laugh and offend/deny other thoughtts.
I will go to dr Smith, but hope to find the one dutch open minded neuro first that backs me up.
Maybe false hope, but i have to try....
Robert
-
uprightdoc
- Family Elder
- Posts: 1995
- Joined: Thu Sep 30, 2010 2:00 pm
- Location: USA
- Contact:
Re: CCSVI and CCVBP
There are potential solutions available now but treating physicians and neurosurgeons have to recognize what the problem is first. Upright MRI is the best way to show that there is a problem.
-
uprightdoc
- Family Elder
- Posts: 1995
- Joined: Thu Sep 30, 2010 2:00 pm
- Location: USA
- Contact:
Re: CCSVI and CCVBP
Robert,
The link below is to a presentation on the craniocervical junction by Dr. Harshfield. Somewhere around the 1 hour mark he discusses tears and degeneration of the dura mater, muscles and ligaments of the upper cervical spine. It doesn't take a rocket scientist to understand the damage that can occur to the craniocervical junction as a result of head and neck trauma, such as from whiplash injuries, football, boxing and "heading" the ball in soccer (football for you bloody blokes on the other side of the pond).
https://www.youtube.com/watch?v=3tSqT0g ... e=youtu.be
The link below is to a presentation on the craniocervical junction by Dr. Harshfield. Somewhere around the 1 hour mark he discusses tears and degeneration of the dura mater, muscles and ligaments of the upper cervical spine. It doesn't take a rocket scientist to understand the damage that can occur to the craniocervical junction as a result of head and neck trauma, such as from whiplash injuries, football, boxing and "heading" the ball in soccer (football for you bloody blokes on the other side of the pond).
https://www.youtube.com/watch?v=3tSqT0g ... e=youtu.be
Re: CCSVI and CCVBP
Great doc,watched it for the first 45 minutes....rest tomorrow
Re: CCSVI and CCVBP
Hi Dr F and Robertuprightdoc wrote:Robert,
The link below is to a presentation on the craniocervical junction by Dr. Harshfield. Somewhere around the 1 hour mark he discusses tears and degeneration of the dura mater, muscles and ligaments of the upper cervical spine. It doesn't take a rocket scientist to understand the damage that can occur to the craniocervical junction as a result of head and neck trauma, such as from whiplash injuries, football, boxing and "heading" the ball in soccer (football for you bloody blokes on the other side of the pond).
https://www.youtube.com/watch?v=3tSqT0g ... e=youtu.be
I had a question that has been asked on other threads about the issues of injury and incidence of MS occurring.
If there is a link between injury and MS mimic or MS does that mean that rehab from the injury/injuries is where this cascades from?
The other question that was asked was is the issue that the body isn't healing and re-habing as it should even when good treatments are undertaken?
To me this may be a chicken and egg question but with the current Media flood about the glymphic/lymphatic system of the CSN it seems to be a relevant question to me because the injury 'might' be said to be cause when in fact there is healing/alignment issues even with good treatment occurring?
It seems that the Media announcement of this 'old' finding needs to look at what powers the system, is it a flow of the lymphatic fluid because of the flow of the blood across the CNS which also could be effected in the supply and return to the CNS eg juggs and verts etc,etc (CCSVI)
;)
Nigel
-
uprightdoc
- Family Elder
- Posts: 1995
- Joined: Thu Sep 30, 2010 2:00 pm
- Location: USA
- Contact:
Re: CCSVI and CCVBP
Hello Nigel,
The neurodegenerative cascades are the result of trauma to the hard and soft tissues of the spine. Trauma to the bones, connective tissues and muscles of the spine can lead to deformation of blood and CSF pathways resulting in chronic ischemia, edema and hydrocephalus.
The answer to the second question is that the body does not always heal well and recover from certain traumatic injuries and repeat traumas, such as "heading the ball." It depends on the circumstances and the person. Sometimes the damage is beyond repair and even the best treatments will fail. Fortunatly, there are more options available and there will be more in the near future when the neurosurgeons get up to speed.
I have referred to CSF flow as the "lymphatic" system of the brain for decades since the first paper I published in 1988. The so called "glymphatic" system is primarily by arterial pulsations and is affected by circulation. On the supply side, cardiovascular degeneration affects arterial pulsations and CSF flow. On the return side, obstruction to venous flow also affects CSF flow. Trauma to the craniocervical junction can affect arterial blood, venous blood and CSF flow in and out of the cranial vault.
The neurodegenerative cascades are the result of trauma to the hard and soft tissues of the spine. Trauma to the bones, connective tissues and muscles of the spine can lead to deformation of blood and CSF pathways resulting in chronic ischemia, edema and hydrocephalus.
The answer to the second question is that the body does not always heal well and recover from certain traumatic injuries and repeat traumas, such as "heading the ball." It depends on the circumstances and the person. Sometimes the damage is beyond repair and even the best treatments will fail. Fortunatly, there are more options available and there will be more in the near future when the neurosurgeons get up to speed.
I have referred to CSF flow as the "lymphatic" system of the brain for decades since the first paper I published in 1988. The so called "glymphatic" system is primarily by arterial pulsations and is affected by circulation. On the supply side, cardiovascular degeneration affects arterial pulsations and CSF flow. On the return side, obstruction to venous flow also affects CSF flow. Trauma to the craniocervical junction can affect arterial blood, venous blood and CSF flow in and out of the cranial vault.
Re: CCSVI and CCVBP
Thanks Dr F, I will let that sink in more.
One clarification please, the CSF and its plus/flow enables it to circulate I am guessing and then there is an independent system, the lymphatic/glymph system that removes 'stuff' that the immune system has separated or detoxified from the CSF, a filtering system?
Is this system throughout the CNS because it is 'connected/attached' to the veins in the CNS?
Would this system also be pulse dependent from the heart beat/flow of blood across the brain?
I am imagining a situation where the blood flow, CSF flow and lymph system flow are in a step down or interconnected by pulsing that isn't yet tested or fully understood?
If the arterial blood flow pulses are less than normal, then the CSF flow is much less than normal and in a cascade sense the lymph flow would be proportionately even less than normal?
So I assume that the lymph system of the CNS in degenerative diseases is an issue?
The original paper from Angelique Corthals has detail to link the lymphatic issues to MS development
http://www.jstor.org/discover/10.1086/6 ... 2171641217
Nigel
One clarification please, the CSF and its plus/flow enables it to circulate I am guessing and then there is an independent system, the lymphatic/glymph system that removes 'stuff' that the immune system has separated or detoxified from the CSF, a filtering system?
Is this system throughout the CNS because it is 'connected/attached' to the veins in the CNS?
Would this system also be pulse dependent from the heart beat/flow of blood across the brain?
I am imagining a situation where the blood flow, CSF flow and lymph system flow are in a step down or interconnected by pulsing that isn't yet tested or fully understood?
If the arterial blood flow pulses are less than normal, then the CSF flow is much less than normal and in a cascade sense the lymph flow would be proportionately even less than normal?
So I assume that the lymph system of the CNS in degenerative diseases is an issue?
The original paper from Angelique Corthals has detail to link the lymphatic issues to MS development
http://www.jstor.org/discover/10.1086/6 ... 2171641217
Nigel
-
uprightdoc
- Family Elder
- Posts: 1995
- Joined: Thu Sep 30, 2010 2:00 pm
- Location: USA
- Contact:
Re: CCSVI and CCVBP
Nigel,
The glymphatic system is the subarachnoid and perivascular pathways. It is not a separate system. The term glymphatic system was recently coined to describe the system because it is comprised mostly of glial cells, which have immunological capabilities. The brain, however, has no lymph vessels and no lymph glands.
It is currently believed that the bulk of CSF flows out of the subarachnoid and perivascular spaces of the brain and cord through the arachnoid granulations and into the venous system. Some CSF, however, also flows directly into lymphatic vessels, especially the lymphatics of the nose. After it enters general circulation the "stuff" that has been separated from CSF can pass through and be processed by the lymphatic system.
The subarachnoid and perivascular (Virchow-Robins) spaces are not related to the veins. They are part of the protective covering of the brain called meninges. In particular, the inner subarachnoid and pia mater are part of the leptomeninges. The dura mater is the pacymeninges. The pia mater of the leptomeninges peels away and follows the arteries and veins as they enter and exit the subarachnoids space and brain. The space between the pia mater and blood vessels is called the perivascular (Virchow-Robins) space.
CSF flow is driven by and dependant upon arterial pulsations. Lymph flow is primarily driven by protein concentration gradients (oncotic) rather than arterial pulsations. It is further assisted by pressure gradients from movement and gravity.
It is currently suspected that neurodegenerative protein aggragation diseases such as Alzheimer's and Parkinson's are due to sluggish CSF flow that leads to the accumuation of waste products such as Beta amyloids. The cardiovascular system and the strength of arterial pulsations degenerate with age, which decrease its ability to drive CSF through the brain. Obstuction to venous outflow also affects CSF flow. The craniocervical junction and lower spine can affect venous flow. Aging causes degeneration and deformation of the spine that can affect venous flow. Trauma also causes degeneration and deformation of the spine that can affect blood and CSF flow.
The CNS doesn't have a lymphatic system. The CSF system is only part of the problem in neurodegenerative diseases. The arteries and veins are also part of the problem
The glymphatic system is the subarachnoid and perivascular pathways. It is not a separate system. The term glymphatic system was recently coined to describe the system because it is comprised mostly of glial cells, which have immunological capabilities. The brain, however, has no lymph vessels and no lymph glands.
It is currently believed that the bulk of CSF flows out of the subarachnoid and perivascular spaces of the brain and cord through the arachnoid granulations and into the venous system. Some CSF, however, also flows directly into lymphatic vessels, especially the lymphatics of the nose. After it enters general circulation the "stuff" that has been separated from CSF can pass through and be processed by the lymphatic system.
The subarachnoid and perivascular (Virchow-Robins) spaces are not related to the veins. They are part of the protective covering of the brain called meninges. In particular, the inner subarachnoid and pia mater are part of the leptomeninges. The dura mater is the pacymeninges. The pia mater of the leptomeninges peels away and follows the arteries and veins as they enter and exit the subarachnoids space and brain. The space between the pia mater and blood vessels is called the perivascular (Virchow-Robins) space.
CSF flow is driven by and dependant upon arterial pulsations. Lymph flow is primarily driven by protein concentration gradients (oncotic) rather than arterial pulsations. It is further assisted by pressure gradients from movement and gravity.
It is currently suspected that neurodegenerative protein aggragation diseases such as Alzheimer's and Parkinson's are due to sluggish CSF flow that leads to the accumuation of waste products such as Beta amyloids. The cardiovascular system and the strength of arterial pulsations degenerate with age, which decrease its ability to drive CSF through the brain. Obstuction to venous outflow also affects CSF flow. The craniocervical junction and lower spine can affect venous flow. Aging causes degeneration and deformation of the spine that can affect venous flow. Trauma also causes degeneration and deformation of the spine that can affect blood and CSF flow.
The CNS doesn't have a lymphatic system. The CSF system is only part of the problem in neurodegenerative diseases. The arteries and veins are also part of the problem