CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: CCSVI and CCVBP

Postby HappyPoet » Mon Apr 22, 2013 12:17 pm

post deleted.
Last edited by HappyPoet on Wed Apr 24, 2013 3:13 pm, edited 3 times in total.
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Re: CCSVI and CCVBP

Postby HappyPoet » Mon Apr 22, 2013 12:19 pm

CONGRATULATIONS on reaching 200 pages in your thread!
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Apr 22, 2013 12:26 pm

centenarian100 wrote:
uprightdoc wrote:As I have mentioned many times on this thread - it's not the degree of descent that matters. What matters is whether or not it causes problems.


fair enough, but her symptoms are not suggestive of Chiari-related symptoms.

Did she describe postural posterior headaches or cerebellar dysfunction or anything typically associated with Chiari-I? You want to attribute her foot drop to <3mm of cerebellar herniation?

uprightdoc wrote: The signs and symptoms of Chiari 0 and Chiari 1 are similar to MS.


Not really


Reading this quote does alert me to the fact that MRI images very rarely give reason for symptoms found in de-generative diseases such as MS, Parkinsons and Alzheimers.
My own example is graphic of this issue. There are so many examples where the inflammation that occurs due to structural issues and infection issues does not give a Radiologist or a Neurologist an indication of cause of symptoms.
The waxing and waning of symptoms is also not explained by MRI, either supine or Upright imaging! The inflammation that occurs down the line so to say with Chiari is poorly understood and not visioned!

;)
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Apr 22, 2013 12:52 pm

The study by Milohart and Boiognese on atlanto-axial-occipital instability and cranial settling causing a Chiari 1 malformations is one of my favorites. Chiari signs and symptoms show show a great deal of variability including headaches. It isn't necessary to have cerebellar signs either and 3mm descent or less can be enough to cause muscle weakness in the legs.

The quote below is from the WebMD page I provided a link to above.

"Traditionally, Chiari malformations have been defined and classified by how much of the cerebellar tonsils protrude through the foramen magnum. A diagnosis of a Chiari malformation usually signifies that the cerebellar tonsils protrude below the foramen magnum (often cited as at least 5 millimeters). However, researchers have determined that the length of tonsil descent in a Chiari malformation does not always correspond to the severity of symptoms or to the response to treatment. In fact, some individuals are classified as having Chiari malformation type 0, in which there is minimal or no descent of the cerebellar tonsils. These individuals still have symptoms associated with a Chiari malformation, most likely due to abnormalities in the flow of cerebrospinal fluid within the skull and spinal canal. Research is ongoing to understand the complex, underlying mechanisms that cause Chiari malformations. "

If you disagree you should discuss it with Milhorat and Bologonese, as well as other leading Chiari experts, neurosurgeons and radiologists.
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Re: CCSVI and CCVBP

Postby centenarian100 » Mon Apr 22, 2013 12:55 pm

NZer1 wrote:Reading this quote does alert me to the fact that MRI images very rarely give reason for symptoms found in de-generative diseases such as MS, Parkinsons and Alzheimers.
My own example is graphic of this issue. There are so many examples where the inflammation that occurs due to structural issues and infection issues does not give a Radiologist or a Neurologist an indication of cause of symptoms.


That is why all of these diagnoses are largely made clinically. Out of curiosity, what is your "own example"?
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Apr 22, 2013 12:56 pm

Hello Poet,
Thanks for the good advice. Unfortunately I replied before I read your post.
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Apr 22, 2013 12:58 pm

HappyPoet wrote:Hi Dr. Flanagan,

I give you my apologies. I believe Centenarian came to your thread because she's upset with me for inquiring about her "husband" on her "badass" thread (general forum) that she started in which she asked for personal experiences from members. Evidently, I made a mistake in her mind because I asked about her connection to MS (she gives a one-word answer, "husband," which is suspicious to me). I then asked her to share her "husband's" "most impressive feat" which is a quite reasonable request since she is the one who started the thread. Unsurprisingly, she never came back to the thread to answer my question which seems suspicious, imo.

Then, I post on your thread which she must have seen because your thread is the only other thread she posted on for several days. I thought she moved on to other pastures, but obviously I was wrong. Then Monday comes around, and she's back. Hmmm.

Personally, I think this person might work for a company, posting mostly during typical work hours and not on weekends, hmmm. We've seen this happen at TiMS many times before. I take great umbrage at people who come here under false pretenses to cause trouble and to upset and cause stress to people who suffer from MS--and we know stress can cause NEW lesions. Seems like she might not give a damn about hurting us. She's been harassing NHE, too, and I don't know why--I wonder if she realizes NHE is a moderator.

Oh, she'll probably come back here to try to justify herself, but if it looks like a duck, posts like a duck, and doesn't post like a coward...

My advice is to ignore her post because she might not ever leave you alone no matter what you say.

~~~~~~~~~~~~~~~~

Hey Centenarian, if you tell us about yourself and background and about your "husband" and his "badass" impressive feat, and I'm wrong about you, I'll apologize.

Edit: changed "is not" and "will not" to "might."



HP, I think that this person does have a need to distract us from the learning and healing opportunities we are achieving here, I have come across the name on other threads, been subject to the discrediting and feel that discrediting is the purpose for some covert reason!

:)
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Apr 22, 2013 1:00 pm

Nigel,
While the signs and symptoms seen in MS may be difficult to explain, the atrophy of the brain and degeneration of the substantia nigra shown on brain scans explains many of the signs and symptoms in Alzheimer's and Parkinson's. Atrophy of the brainstem and cerebellum explains the signs and symptoms seen in multisystem atrophy.
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Re: CCSVI and CCVBP

Postby centenarian100 » Mon Apr 22, 2013 1:04 pm

uprightdoc wrote:... and 3mm descent or less can be enough to cause muscle weakness in the legs.


source?

(Don't take it personally; I'm a skeptical person in general)

The quote below is from the WebMD page I provided a link to above.

"Traditionally, Chiari malformations have been defined and classified by how much of the cerebellar tonsils protrude through the foramen magnum. A diagnosis of a Chiari malformation usually signifies that the cerebellar tonsils protrude below the foramen magnum (often cited as at least 5 millimeters). However, researchers have determined that the length of tonsil descent in a Chiari malformation does not always correspond to the severity of symptoms or to the response to treatment. In fact, some individuals are classified as having Chiari malformation type 0, in which there is minimal or no descent of the cerebellar tonsils. These individuals still have symptoms associated with a Chiari malformation, most likely due to abnormalities in the flow of cerebrospinal fluid within the skull and spinal canal. Research is ongoing to understand the complex, underlying mechanisms that cause Chiari malformations. "

If you disagree you should discuss it with Milhorat and Bologonese, as well as other leading Chiari experts, neurosurgeons and radiologists.


I don't disagree with that.

By the way,if you genuinely believe that the described case represents symptoms caused by a "Chiari 0 malformation," would you consider neurosurgery referral for evaluation for suboccipital craniectomy?
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Apr 22, 2013 1:17 pm

uprightdoc wrote:Nigel,
While the signs and symptoms seen in MS may be difficult to explain, the atrophy of the brain and degeneration of the substantia nigra shown on brain scans explains many of the signs and symptoms in Alzheimer's and Parkinson's. Atrophy of the brainstem and cerebellum explains the signs and symptoms seen in multisystem atrophy.


Thanks Dr F, I am finding at present the 'neck' symptoms like Le Hermittes and leg shocks and weakness that varies with neck positions as I am walking and looking at different things on my morning walks is an example of how an MRI will probably not show a 'cause' for these rapid yet not guaranteed happenings.
I can more my vision by turning my head just a few mm and almost thinking alone is enough to send shocks and weakness particularly through my left side and leg.
So I am of course wanting an MRI at present, but severely broke, and I would love to know if the lesion at C2 dorsal is 'changed'.
I assume that the protocol has something to with the flair of this old problem and that the die off has begun to occur in that region and therefore the symptoms are back! Hoping of course that some regeneration can occur!
Would love to know what is happening on MRI to compare from the old MRI's!
My spinal noises are at an all time high and neck and shoulder pain wake me almost as often as my bladder. Once I have done many stretches the noises decrease and I have less pain and I am able to find positions I can be peaceful enough to sleep. I assume this is from air or fluid moving and decreasing pressure on nerves?
So my assumption is that something is occurring that is related to inflammation and causing the cracking and popping and also the protocol killing the CPn farms at the 3 injury sites along my spine?
I wish I knew!

;)
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Apr 22, 2013 9:56 pm

Dr F, a thought has been rattling around in the Atrophy,
Transverse Myelitis is accepted by Medicine as a dx yet injury to the spine which is ongoing is a challenge to them. Is there some issues with defining the inflammation in the spinal cord when it is chronic and repetitive? In TM and injury there is symptomatic inflammation occurring!

My own example of infection brain and cord is an example of total denial of it being symptomatic and worthy of investigation. Lyme disease is a classic of the same problem. Both diseases are called MS until the PwMS has blood tests that show infection, then the matt is pulled and you are sent to another department for the run around, or you are told it couldn't be causative or an MS mimic!

Is it because inflammation is not seen on MRI but the scar tissue (after the fact healing) of MS is?

So I wonder why in medicine that there is splits between departments, Neuro's being the prime example of ignorance and Radiologists seem to be given much more credit than they should because they are not doing clinical exams to confirm their opinions!

Frustrated, sleep deprived and sore!
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Apr 23, 2013 1:35 am

Nigel,
You definitely have inflammation or swelling in your joints causing all the cracking noises. The stretching and movements are good for the joints and muscles. Stretching and movement open restricted blood and lymph pathways. They also increase blood flow and help reduce inflammation and swelling. You may have segmental tethering in your neck due to chronic inflammation and degeneration in the cervical spine. This can bind the cord and cause a Lhermittes sign. Episodes of increased inflammation increase the tension on tethered segments.
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Re: CCSVI and CCVBP

Postby costumenastional » Tue Apr 23, 2013 1:42 am

This is how things are Nigel. We can only fight back with every thing we got. Imagine being in my place. Seeing the same bad, old movie again...
Even though it sucks with mom not being able to do things as she used to, I couldn't stop thinking I know every single step towards their "diagnosis". Their PPMS diagnosis in specific. The neurological exams, the MRI reports, the clinical data, bloodwork, everything went like they were supposed to when a person suffers from neurological symptoms. The diagnosis couldn't be anything else.
Mom didn't even tell them that she suffers from terrible neck pain for the last 5 years. What difference would it make? She knows them from the good old days.
I didn't want her to be hospitalized cause I knew they d propose chemo. On the other hand, like I told Dr Flanagan, I couldn't decide for her. It is her life. Now, she is thinking of chemo along with upper cervical care. She wants to minimize the chances of getting worse.
Unfortunately, Mitoxandrone most probably has nothing to do with that. I really believe this. Like Campath did nothing for me. Nothing good that is...
I don't believe it is MS. Not with her neck giving her so much trouble. Not with her "non typical" lesions being in there. Only in there.
Not with Dr Flanagan saying that something else might be responsible.
I would be an idiot if a believed something neuros say. They dont know shit. Simple as that.
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Re: CCSVI and CCVBP

Postby NZer1 » Tue Apr 23, 2013 1:44 am

I moved the comment to my site on fb as it was distracting Dr F's thread. :)
Last edited by NZer1 on Tue Apr 23, 2013 1:31 pm, edited 1 time in total.
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Re: CCSVI and CCVBP

Postby NZer1 » Tue Apr 23, 2013 2:04 am

costumenastional wrote:This is how things are Nigel. We can only fight back with every thing we got. Imagine being in my place. Seeing the same bad, old movie again...
Even though it sucks with mom not being able to do things as she used to, I couldn't stop thinking I know every single step towards their "diagnosis". Their PPMS diagnosis in specific. The neurological exams, the MRI reports, the clinical data, bloodwork, everything went like they were supposed to when a person suffers from neurological symptoms. The diagnosis couldn't be anything else.
Mom didn't even tell them that she suffers from terrible neck pain for the last 5 years. What difference would it make? She knows them from the good old days.
I didn't want her to be hospitalized cause I knew they d propose chemo. On the other hand, like I told Dr Flanagan, I couldn't decide for her. It is her life. Now, she is thinking of chemo along with upper cervical care. She wants to minimize the chances of getting worse.
Unfortunately, Mitoxandrone most probably has nothing to do with that. I really believe this. Like Campath did nothing for me. Nothing good that is...
I don't believe it is MS. Not with her neck giving her so much trouble. Not with her "non typical" lesions being in there. Only in there.
Not with Dr Flanagan saying that something else might be responsible.
I would be an idiot if a believed something neuros say. They dont know shit. Simple as that.


Hearing this reminds me of how and why the CRAB drugs and others confuse what is happening. These drugs may effect some other issue happening such as a bacterial infection that goes dormant and the medicos assume that means it 'worked' then when the bacteria come out of their dormant stage due to sensing the coast is clear, the ' MS disease flairs, Yeah Right' and the whole unwellness is back to how it was pre drug intervention.

It could be heavy toxins, leaky gut and so many other issues that have started the ball rolling in MS and throw in an injury or two to the spine plus have a history of diet issues and a bit of stress, maybe some binge drinking and *BANG* disease expresses itself!

If the dx process was looking at all the possible causes of symptoms and they may be spending allot of time and so what, the outcome will be positive rather than a series of ups and downs in stress and hope!
Better to spend more time searching than to jump because of frustration and loss of faith into the unknown of drug therapies imo.
It took me years to learn from Dr F that my neck was the seat of most of my symptoms, so I found the best option in NZ to be evaluated and treated. When I knew that my neck was the best it could be from the alignment prospective I moved to the next level of findings which was the CPn infection. Once that is 'managed' I will follow up on the Vascular findings from the Doppler testing that show flow issues. In the mean time I have got my diet, stresses and mindfullness on track.
So I believe all the time and effort to disassemble the symptoms and general Health History have given me insight to what can be done and what order of approach.

CN I hope you can support your Mum to approach the whole picture first before embarking on the journey back to wellness! Some drug options are not good, full stop!

;)
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