This Is MS Multiple Sclerosis Knowledge & Support Community

Hello Poet,
Photovoltaic solar systems are expensive and it takes many years to recoup your investment. My system uses solar heated water. It heats our domestic hot water and radiant floor heat system. It will pay for itself in less than three years at today's prices for propane.

Now back to the brain. I have a page to put out soon on the design of the posterior fossa due to upright posture. The design of the posterior fossa makes it challenging to maintain proper brain support. It can also cause problems such as Chiari malformations among other things. It may also explain why European races get MS lesions in the brain and Asian and African races don't. It has to do with pitch and fluid flow.

Hi Team.
Dr. how do I get my neuro to consider Chari malformations as the reason for my health problems. The MRIs that I have are all lying down and there has been no indication in any of them.
The more I listen to you the more I am aware that my symptoms are spine related. By that I mean that movement in my neck affects the symptoms in the same way L'Hermittes affects my sensory and now also motor symptoms.
Position of my head and curve of my neck and also curve of my spine has immediate symptom responses.
I am wondering how I can get the appointed neuro interested in investigating this line of thought.
I feel as though I need to learn a way to show him a symptom that is exacerbated by movement so that he will follow this line of inquiry. The radiologists opinion from my MRIs has closed the door to the possibility that I have Chari or tethered cord symptoms.
The bulge in my C5-C6 disc is, IMO, having effect on my symptoms that has been overlooked, this I would have thought should have been a clue about flexation and symptom increases from flexation.
Is there anything you can think of that will alert the neuro to investigate my problems deeper and not simply right me off as an MS patient and that MS can not be 'treated or improved'.
I don't want to have the door closed on further testing by the neuro because I may come across as someone grabbing at straws, someone spending too much time on the net and someone who takes up neuros time with uneducated beleifs.
Hope this makes sense I'm sure we are all in this same predicament, we feel as though we are not heard after doing soo much ground work to identify and isolate our symptoms to help neuros yet they see what we do as interfering in their trade.

HI NIZER, don't feel bad like you are a person grabbing at straws etc. you are like so many of us. maybe you just might be the one amongst us that hits the spot. we are all so different.

and if it makes you feel any better-look at mainstream med. with ms and other things. in many ways they have been grabbing at straws for a long time. some straws for the good and some not so good. but, for the symptoms they named ms it seems they haven't come up with a straw worth holding onto yet. unless of course there is a big dollar on it. whether it helps or not if it don't kill you first.

so, nothing to loose, but the possibility to gain is there.

i hope we all could find our right straw.........the best in your searching

Thanks Blossom, thats why we put so much weight onto Dr. F's shoulders.
'gards Nigel

hi nigel

i would be great to have a talk about chiari malformations, as a sufferer, i understand chairi very well, i live and breath it everyday.
what NL are you going to?
whats tests have you had, and what results did you get from MRI,

the thing with chiari is, its not just a spine condition, the spine is a small percentage of what goes on, the brain and signals that are sent around the body are altered. it also effects blood pressure, heart, lungs, urine, bowels, brain functions. etc.

neava

Hello Nigel,
I suspect what you have is similar to a "functional Chiari." Functional Chiari's are seen in children with platybasia (flat base) of the skull. In these cases the brain comes in contact with the base of the skull (clivus) when the head is flexed forward chin to the chest similar to a Lhermittes's sign, which causes tension or contact of the cord with the spinal canal or the spinal nerves in their openings. Your neck is in a flexion strain position well forward of where it should be. Flexion of the cervical spine creates tension in the cord. It also pulls the brainstem closer to the clivus.

neava wrote: the thing with chiari is, its not just a spine condition, the spine is a small percentage of what goes on, the brain and signals that are sent around the body are altered. it also effects blood pressure, heart, lungs, urine, bowels, brain functions. etc.

neava

Neava,
You're seeing the whole picture but you're not giving the spine enough credit. Where do you think all those problems come from? Chiari malformation causes problems with the spinal cord along with the sacro-occipital pump for the CSF. When there is excess pressure placed on the nerves, especially the spinal cord and brainstem, the signals that travel across those nerves do get altered. As a result bodily functions become compromised and stop working properly. Obviously fixing the spine, especially correcting the atlas and axis, won't correct a chiari malformation but it is possible that it can help alleviate some of the symptoms associated with it.

If I may ask, how old were you when you first started having MS type symptoms?

regards,
Dr. Koontz

hi dr koontz

yes chiari does effect spine in certain people, S or C curves or syrinx. not everyone has these problems, also some medicals believe that the cord is too short and the brain is being pulled in the spinal canal,
the resulting pressure on the cerebellum can block the flow of cerebrospinal fluid. expecially when standing, and laying down, sudden movments,
i also know that adjustments are dangerous, and could kill some people with chiari malformation, or make their symptons worse very fast, chiari cannot be fixed, its there for life, its not worth the risk to end up worse when you have no option to get better afterwards,
its very risky, and should not be taken lightly,
the lumbar and thoracic region is the only parts that are able to adjusted, never neck,
sometimes decompression surgery wont relieve symptoms,

i was 16 when i had my first major problem, before then just little things that dont get checked, im now 31,

i have chiari malformation type 1, 8mm, i have scattered white matter hyperintensities in areas of the brain, so looking at MS, i have my second arachnoid cyst in my thoractic region, i have heart issuses, some days i cant breath properly, ive also have 3 TIAs, im a walking time bomb, lol

neava

uprightdoc wrote:Hello Nigel,
I suspect what you have is similar to a "functional Chiari." Functional Chiari's are seen in children with platybasia (flat base) of the skull. In these cases the brain comes in contact with the base of the skull (clivus) when the head is flexed forward chin to the chest similar to a Lhermittes's sign, which causes tension or contact of the cord with the spinal canal or the spinal nerves in their openings. Your neck is in a flexion strain position well forward of where it should be. Flexion of the cervical spine creates tension in the cord. It also pulls the brainstem closer to the clivus.

Thanks Dr.. I agree with your assessment.
How do I get a neuro, the gate keeper of further exploration, to see this?
What will they be looking for in a dx to give them the clue to searching for these indicators?
We have over time come to the understanding, what I need is to be able to conclusively point to this. I have found that the half hour appointment system with a neuro needs to be focused, it normally is best for me to have a brief written statement of facts to give to the neuro when I walk in the door. Some are motivated to help and others have been motivated to discredit without basis purely because they are that type of personality, mind closed and brain in neutral.
Without angering the person or insulting their intellect, I need to direct their attention asap to what we know.
My question is what will seal it? What will grab their interest? What symptom will point them directly to our dx? How do I help them to realize what we have?
Most symptoms are not measurable, so IMO it is going to be what I describe that will be of importance.
What symptom(s) indicate chari type disability most acutely.
What will switch the light on for an investigating neuro?
Like all of us, the frustration levels blind us at times, I am likely reaching a peak here team.
Regards, and enjoy your day,
Nigel

hi nigel

sorry to jump in,
you need to find a specialist who has an interest in chiari, this is very difficult in NZ,

thats the only way you might get your answers, im sorry you are having trouble, i wish you didnt have to go though it,

who have you seen so far in the Nuero world?

Nigel,

Below is a summary of your signs and symptoms:

I .. have had definite MS type symptoms for about 5 years. At the onset of my symptoms I was having pains in both shoulders and under investigation both side rotator cuffs were torn, found after x-rays and ultra sound. During the treatment the MS symptoms occurred. Ironically I could not remember 'tearing' the rotator cuffs...I have worn out much of my spine, and been told I have disc degeneration in three areas.

In 2008 when they were trying to find a reason for my L’hermittee’s symptom, numbness in my right foot, fatigue, eye blurring, progressive sensory reduction complaints, heat intolerance, weakness in limbs, balance issues, sensory changes in torso, bladder frequency, cognitive issues/confusion...

The MRI done in 2008. With respect to the spine, there is a linear area of increased T2 signal within the dorsal aspect of the cervical cord at the C2 level measuring around 16mm in length. No cord expansion is identified and there is no increased signal on post contrast T1 imaging. There is a right paracentral protrusion of the C6/7 disc which encroaches on the right C6/7 neural foramen. There is osteophyte formation directed posteriorly about the C5/6 disc which mildly indents the thecal sac, but there is no evidence of cord compression or CSF effacement. There is narrowing of the L5/S1 disc with posteriorly directed osteophytes and a generalised posterior bulge of the disc which indents the thecal sac. The transiting S1 nerve roots appear deviated slightly posteriorly but there is no definite compression. A small caverous hemangioma in the T2 vertebral body. Summary: Two white matter hyperintensities have developed on the left side as described since the previous scan of 12 months ago, There is a stable hyperintensity in the dorsal aspect of the cervical cord as described.

Many years ago I was told I have left leg shorter by 22mm and worn a wedge in the last couple of years. The wedge is a 9mm one.

Since having this MRI I have now been told I have probable MS. I personally believe that it is PPMS as there have been no relapses or remissions...I also have Trigeminal Neuralgia on the left side of my face that is controlled by Gabapentin. This has been an issue for the last 9 months. It started as intermittent buzzing in my left ear when lying down and progressed over the following weeks to the usual suicidal pain of TN.
I have noticed in the last week that when I am bending over weeding in my garden that after being bent over for five or so minutes that I stand and feel light headed. At various times over the last 5 years I have been suspicious of low BP ... is anything that could be making my BP fluctuate and at present I am aware of it more as my disease is active ...Its been about 18 months since my last MRI and I think from memory there were about 6 lesions in the brain that showed after the Cord lesion MRI...
I have had 3 MRI (2 x 2007 and 1 x 2008) In the first two they noted the disc degeneration and the disc bulges and in the 2008 they found the lesions, below plus the previously mentioned cord lesion.
"Two foci of white matter hyperintenity have developed as shown on flair and T2 imaging. There is a 2-3mm focal elipitical area anteriorly in the left centrum semiovale and a more confluent area of white matter hyperintensity adjacent to the lateral aspect of the atrium of the left lateral ventricle. This measures 11mm in maximum diameter. No enhancement occurs on administration of Gadolinium."
When the Neuro reviewed the films with me when I asked what areas would be affected by these lesions and the cord lesion he pointed out four other lesions which I could also clearly see when he indicated where they were. Sadly he did not write down the positions of the extra four found.

You have: L’hermittee’s sign, numbness in right foot, fatigue, eye blurring, progressive sensory loss, heat intolerance, weakness in limbs, balance issues, sensory changes in torso, bladder frequency, cognitive issues/confusion, dizziness, balance problems, tinnitus, and trigeminal neuralgia among other things. The belly side of your brainstem near the clivus, and the upper cord are being irritated. You most likely have decreased space in the pontine cisterns which protect the belly side of the brainstem. The decrease in space is due to the flexion misalignment of your cervical spine. It also creates CSF pressure in the area.

A Chiari malformation was not noted in previous scans which were done lying down. Upright cine MRI, MRA and MRV would be better in your case. If they include cervical flexion it would be even better. Discuss it with your neuro. Your spine is in reasonable condition but your head and neck are way out of plumb and so are the brainstem and cord.

Thanks Dr. I will take this to my GP and work on an approach for my visit with the neuro.
Much appreciated Nigel

Nigel,
Since you take your own blood pressure and you suspect it is low, which conflicts with BP taken by your GP's nurse, then keep personal records and bring your monitor with you on your next visit. Compare the readings. There is often a great deal of discrepancy between devices as well as the physician or nurse taking the pressure.

Nigel,
Something else to look at is the cuff size of the blood pressure cuff being used. If the cuff is the wrong size for your arm then the readings will be off. Contrary to popular belief blood pressure cuff's are not one size fits all.

neava wrote: i also know that adjustments are dangerous, and could kill some people with chiari malformation, or make their symptons worse very fast, chiari cannot be fixed, its there for life, its not worth the risk to end up worse when you have no option to get better afterwards,
its very risky, and should not be taken lightly,
the lumbar and thoracic region is the only parts that are able to adjusted, never neck,
sometimes decompression surgery wont relieve symptoms

neava

I understand your need for caution when considering chiropractic adjustments to the cervical spine. However, if done correctly, by a trained chiropractor who graduated from an accredited chiropractic school, cervical adjustments are perfectly safe. It is a fallacy that adjustments to the cervical spine can kill. There has never been one single documented case where a chiropractor has killed a patient by doing a cervical adjustment. I mention this because in certain parts of Europe there are no laws concerning the practice of chiropractic and thus no organization to verify the credentials of chiropractors. In some countries where there is a chiropractic association there is still no laws governing the practice of chiropractic so people can get away with saying they are doing chiropractic when they have no formal training whatsoever. If there is no chiropractic association is up to the patient to ask the right questions and find out where the person graduated.

For people such as yourself with a chiari malformation there are several light force adjustment techniques that are available. NUCCA is a very safe, effective and specific Upper Cervical Adjustment technique that uses such light force that it almost feels like nothings being done at all but actually does a great deal.

There is only one Upper Cervical Chiropractor in New Zealand and he does Blair. There are several in Australia but only one does NUCCA. If you are interested in their contact information let me know and I will PM you with it.

The same goes for you Nigel. If you are interested in their contact information let me know and I'll send it to you.