CCSVI and CCVBP

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

Postby uprightdoc » Fri Oct 08, 2010 9:07 am

Hello KathyJ, You have a most interesting case but a lot of it makes sense. The most obvious thing is how symptoms can be provoked by certain positions of the head. Lying on your right side cause facial numbness and sluggish eye muscles. Lying on the left side cause a sensation of pressure on the opposite right side. Lying on your back causes pressure in the front of the head. Lastly, during and episode, tilting your head backwards provokes signs and symptoms.

The signs and symptoms are mostly in the brain and except for the eye mostly the lower brain in the posterior fossa. Except for the face, you didn't tell where you experience the numbness and tingling. Nystagmus, twitches, tremors and spasms can be due to many causes from fevers to chills, tired muscles and circulatory problems. They can also be indicative of neurological stress. I suspect however that yours may be due to musculoskeletal stress. It sounds like you have hypertonicity of the paraspinal muscles, especially the cervical muscles. The arterial blood supply to the cerebellum comes from the vertebral arteries in the back of the neck and enters the brain between the first cervial vertebra and the base of the skull.

The other most obvious sign is that your brain is not happy inside the cranial vault. It is most likely in the wrong position inside the cranial vault and misalignments and twists in the spine can misalign the brain like a Chiari malformation. Malpositioning can predipose the brain to bumping into the hard bones of the vault in certain positions and compressing delicate cranial nerves to the face. In addition to the facial, scalp and neck muscles symptoms it would also explain the eye pain you experience. I would love to see MRI reports and basic spine x-rays.
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Postby uprightdoc » Fri Oct 08, 2010 9:22 am

Buenos noches Argentina, Como esta usted? That's all I remember but I love the way it sounds as much as Flamenco guitar and I just discovered Pepe Romero. The man has four hands. His tremelo and rasqueado are incredible.

Fernando, your doctor is more than just a generalist or day to day physician. The man is a sage. Take your time shopping for a equally great chiropractor. Look for a chiropractor similar to the sage you found, one who is well seasoned, experienced, caring and wise.
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Postby Kathyj08 » Fri Oct 08, 2010 11:06 am

Thanks for your detailed response.
I didn't want to bore anyone with my many symptoms but others that I didn't mention earlier are migraines, different parts of the bottom of my feet feel numb off and on throughout the day (mostly toes or pad below toes) and this gets more noticable when shoes are on, left arm and leg feel slightly weak off and on, with this flare up my neck cracks with almost every turn of the head, poor sleep (like I'm full of caffeine when I'm not), and another "wierd" one my neuro describes as positional parathesis, if I lean up against something in no time that part that has the pressure has become cold and numb, kneeling on the floor for just a minute or two when I get up my knees are numb, pretty much this happens all over the body. And it's not a tingling process like the "normal" person feels when it comes back to life after it's gone to sleep. It just all the sudden is back after a little movement. I actually atribute that to an inflammation process that is going on in my body. I know, it's very wierd. I'm sure there is more but that gives a pretty good detail.
I would love to have you look at mri's and x-rays. I do not have x-rays in hand but have reports and copies of cd's and such.
One thing interesting, when these symptoms returned last year after all these years, I went to a naturepath (I think that's what he was) and it's one where they push on certain body parts where you resist them and many weaknesses came up and the one he was most concerned about was the cervical spine. (I think it was the C5 or C6) His #1 recommendation was that I see a chiropractor. I did, but he was very conservative and I think the possible ms scared him and he didn't want to cause any more damage. He would crack the neck but everything else was pretty much soft tissue manipulation.
I'm not too good at techy stuff but could send you some reports if you can pm me and let me know how to get the info. to you.
Thanks again.
Kathy
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Postby Kathryn333 » Fri Oct 08, 2010 11:27 am

Hi, Dr. Flanagan. Thank you so much for your response. I’ll try to answer your questions in the order you asked.
My grandfather’s stroke was very debilitating. He was paralyzed on the left side and confined to a wheelchair. He also had high BP and they discovered he was diabetic at the time of the stroke. As for my uncle, I know there are many types of dementia, but I didn’t know there was more than one type of Alzheimer’s disease. The loss of memory was described to me once as like the peeling of an onion, and that’s was it was like. I realize now how important the family history is, and I didn’t mention that my uncle also had a stroke. His speech and swallowing were affected and he didn’t walk again. A cousin also had a stroke in his 50s, speech affected and he walks with a cane.

My MRI was done in 2005, and it reads as follows:

“This examination demonstrates extensive bihemispheric periventricular and deep white matter lesions, in keeping with the clinical diagnosis of MS. There is at least one lesion in the left deep cerebellar nuclei. I am not convinced any other definite posterior fossa lesions.
There is evidence of axonal loss in a number of the white matter lesions, in both hemispheres.”

I had one major attack shortly after the MRI was done, and the cognitive issues got worse.
They didn’t do MR angiograms.
I will ask my doctor to order an x-ray of the spine.

Thank you again, Dr. Flanagan, for all that you’re doing for all of us.
Are you sure you don’t want to reconsider retirement? I can be there in a few hours!
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Postby uprightdoc » Fri Oct 08, 2010 1:01 pm

Kathryn, There is a type of vascular dementia called multi infart dementia or MID. It is associtated with high blood pressure damage to small blood vessels called lenticulostriate vessels, that cause lacunar (lake-like) infarcts in the brain and symptoms identical to AD. There is also a vascular Parkinson's and I also suspect and will be posting on vascular MS. Diabetes wrecks blood vessels. So does uncontrolled high blood pressure. They often go hand in hand and the combination makes matters much worse.

I suspect you have a slightly different version of what appears to be family problems with circulation in general. In contrast to your grandfather and uncle you have low pressure problems and migraines. It is my contention that both conditions can cause chronic transient ischemic type mini strokes. Even more than drainage issues, your problems are on the arterial supply side. The hyperintensity signals are little mini infarcts. You can get by with what you have but you certainly should try to put a halt to further damage.
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Postby NZer1 » Fri Oct 08, 2010 2:30 pm

Found by Cheerleader, aka CCSVI in MS, Joan Beal,
http://jnnp.bmj.com/content/65/6/954.2.extract
Lhermitte’s sign in cavernous angioma of the cervical spinal cord
D KEVIN MURPHY, JOSÉ A GUTRECHT
+ Author Affiliations

Department of Neurology, Lahey Clinic Medical Center, Burlington, Massachusetts
José A. Gutrecht, MD, Department of Neurology, Lahey Clinic Medical Center, 41 Mall Road, Burlington, MA 01805, USA. Telephone 781 744 8631; fax 781 744 5243.
The sudden feeling of “painless but unpleasant electric shock-like discharges” originating in the neck or upper back and spreading down the spine into the limbs on flexion of the head was first described in 1917 by Marie and Chatelin and later by Lhermitte in his seminal paper of 1924.1 It is not a specific symptom but is most commonly encountered in cervical spinal cord demyelination caused by multiple sclerosis.2 3 The sign has been found in many other conditions that cause a traumatic or compressive cervical myelopathy, such as cervical spondylosis and epidural, subdural, and intraparenchymatous tumours. It has also been reported infrequently in radiation myelitis, pernicious anaemia (subacute combined degeneration), pyridoxine toxicity, nitrous oxide misuse, cisplatin and docetaxel neuropathies, cervical herpes zoster myelitis, paroxetine withdrawal, Behçet’s disease, and systemic lupus erythematosus. Vascular disease of the cervical spine or intraspinal cord has never been noted to produce Lhermitte’s sign.
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Postby uprightdoc » Fri Oct 08, 2010 2:49 pm

Great report from NZer. Of the those reported, the most common thing that affects most people, especially as they age, is cervical spondylosis which causes compressive myelopathies. That's why certain conditions show up as we age. Even before affecting the cord spondylosis compresses the thecal sac of the cord which contains the vertebral veins.
Lehermitte's maneuver tractions the cord and if it is pinched or trapped inside the foramen magnum or spinal canal, such as in spondylosis, it will irritate the cord. Bechet's disease, SLE, Rheumatoid arthritis etc., are associated with serious degeneration of the spine, spondylosis and stenosis. Scoliosis also causes functional stenosis. Interestingly, I discuss RA and SLE in my book because they are associated with NPH.
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Postby fernando » Fri Oct 08, 2010 3:51 pm

Thanks for your reply and advise.


To my disbelief I continue to have barely noticeable Lhermitte since I wear the lift heel in my left foot.

I remember that when I flexed my head before it even affected my left leg regarding its strength and control. I mean, before the heel, if I flexed the head while walking then my left leg felt weaker for a second or two.
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Postby Kathryn333 » Fri Oct 08, 2010 3:58 pm

Hi. Dr. Flanagan. Thank you for your advice. Should I be seeking a specialist? What kind of specialist would it be? Do you know anyone you can recommend near Toronto? So many questions . . . .

Thank you for what you are doing. Your advice is helping many people.
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Postby DrKoontzDC » Fri Oct 08, 2010 4:49 pm

Hello Everyone,
As some of you may or may not know by now I am the Upper Cervical Chiropractor who Costumenastional has been seeing here in Greece over these past few weeks. Since he told me about this forum I've been keeping my eye on it reading all the different posts. I don't have a whole lot of free time on my hands these days but I will try to keep up as much as possible so please forgive me if I don't reply back immediately. I'd also like to say that Dr. Flanagan has been doing a great job in here of answering everyone's questions. The fact that he's willing to take the time to answer everyone here in such detail shows just how much he cares not to mention the plethora of information he's got locked away in his head.

On to business, After reading some of the posts in here I wanted to chime in on some things that caught my eye.

Kathryn333 wrote:I had my first bout of nystagmus when I was 20, treated with steroids, but never told by the ophthalmologist he suspected MS. Had various symptoms for the next eight years until my first child was born. Six months later, the right side of my body went numb, could stick pins in me, no feeling. I also had nystagmus again, treated with steroids, told it was probably MS, nothing could be done, go home and live with it.


Kathryn333,
The right side of your body going numb is a "classic" sign of a Brainstem lesion. Now depending on exactly where the numbness is and if it's all on one side can give us a better clue as to where on the Brainstem the lesion is located. I'm providing a link to a document which has some scanned pages from a book I have outlining some Neurological information. You and anyone else who has the link can access it here:

http://docs.google.com/fileview?id=1Ao_CWUQIcEd2s6KIdAnfaAmBcebCSqsgTiZXewQFSd72Kk9aJWqyGJYumVFH&hl=en&authkey=CPWl9IMG

If you look on page 10 of the document (it's actually page 96 of the book) it details out the different types of symptoms and their potential causes.

A friend of mine that I graduated high school with, contacted me back in June asking for my opinion on her symptoms. She had right sided numbness, lethargy, loss of grip strength. She mentioned a few other problems that I can't remember right now. She hadn't seen a medical doctor as money is tight for her which is primarily why she contacted me first so she was never diagnosed with anything.

Recognizing her symptoms as a possible Brainstem lesion, I was able to find a NUUCA Chiropractor in her area. He was the only Upper Cervical Chiropractor in her area for 100 miles. Long story short, after a few months of care she got her energy back, most of the numbness went away and she regained her grip strength. She had to stop care due to financial difficulties but is still managing OK for the time being. She also only had her symptoms for a few months before contacting me which means it was caught early and received care that helped her unlike what has happened with most of you as far as I can tell.

This is not to be taken as me saying that everyone who has these symptoms or MS has a problem with their Upper Cervical spine or Brainstem that can be helped by Upper Cervical Specific Chiropractic but rather that you have nothing to lose and everything to gain by visiting an Upper Cervical Chiropractor.

Back to Kathryn333, regarding the Nystagmus, extraocular (eye) movements are controlled by cranial nerves 3, 4 & 6. By testing the vestibular portion of cranial nerve 8 it's also possible to determine a link to either a peripheral or a medullary lesion of the Brainstem. If you take a look at this Wikipedia article on the cranial nerves you can get an idea from the picture there of their importance and see where they originate from on the Brainstem and how a misalignment of the bones in the Upper Cervical Spine can cause a problem with not only those nerves but the Brainstem as well.
http://en.wikipedia.org/wiki/Cranial_nerves

With that laid out, I'd say it's a good possibility that if you were to undergo care from an Upper Cervical Chiropractor to remove any possible pressure that is maybe being exerted on your Brainstem that you could experience a reduction in your symptoms. How much of a reduction, if any, only time can tell. Unlike my friend, you've had your problem for much longer so it will most likely take longer than a couple of months for you to experience the same results as my friend however you never know.

I'd love to post more on some of the other things I've read in here but this will have to suffice for now as it's gotten to be very late. I look forward to conversing with all of you and getting to know you better.

warmest regards,
Dr. Koontz
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Postby DrKoontzDC » Fri Oct 08, 2010 5:04 pm

costumenastional wrote:
uprightdoc wrote:Nonetheless you may have torn connective tissues.


Dear Dr Flanagan, good morning from Athens. Are you referring to connective tissues inside - around the cervical spine? I thought that there is nothing between the Atlas and the Axis, not even discs. Would you care to elaborate when possible?


Hello Costumenastional,
I thought these pics might help to better your understanding. You know what they say, a picture is worth a thousand words.

https://docs.google.com/a/koontzchiropractic.com/leaf?id=0B2djhvPvrO0PZTJhNWNiMmItNTRkYS00YTI2LTkzYWItYWVjNzhiYmI0MWYx&hl=en&authkey=CLXzkuQN

A cutaway view for better visualization of the ligaments that run a little deeper.

https://docs.google.com/a/koontzchiropractic.com/leaf?id=0B2djhvPvrO0PZTg1ZjMwMjUtYWE2Zi00YzE4LWI0YTYtZWY1MDQ2NmEwZWMw&hl=en&authkey=CM3qsvgJ

I hope you're enjoy your weekend!
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Postby jimmylegs » Fri Oct 08, 2010 5:08 pm

just noticed that bit on nystagmus.

did any docs ever show you the research on nystagmus links to nutrition, kathryn?

B1, B12, magnesium?

from the top 10 google results for a search on the terms: nystagmus deficiency

Down beat nystagmus in vitamin B 12 deficiency syndrome. Puri V, Chaudhry N, Satyawani M. Department of Neurology, G.B. Pant Hospital, New Delhi 110 002, ...
www.ncbi.nlm.nih.gov/pubmed/16795999

Downbeat nystagmus caused by thiamine deficiency: an unusual presentation of CNS localization of large cell anaplastic CD 30-positive non-Hodgkin's lymphoma ...
www.ncbi.nlm.nih.gov/pubmed/10089030

Downbeat nystagmus caused by thiamine deficiency: an unusual ...
by AH Mulder
Introduction. In a prospective neuropathologic study, De Reuck et al. [4] found that Wernicke's encephalopathy, caused by thiamine deficiency ...
www.springerlink.com/index/5LJHTAFLGVRHGPVN.pdf

Dysphagia and Vertical Nystagmus in Magnesium Deficiency.
ISAM A. HAMED, M.D.; and ROBERT D. LINDEMAN, M.D.. Oklahoma City Veterans Administration Hospital ...
www.annals.org/content/89/2/222.full.pdf

Vertical and Horizontal Nystagmus in Magnesium Deficiency
WO SMITH ...
by P NEVIUS
Vertical nystagmus has been reported in two patients.1,2 This report concerns an additional patient with magnesium deficiency ...
pdfs.journals.lww.com/.../Meningitis_in_Typhoid_Fever__An_Unusual.47.pdf
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Postby Kathryn333 » Fri Oct 08, 2010 8:16 pm

Dr. Koontz, welcome to the site. Thank you so much for your comments and sharing your book. I’ve just spent the last hour perusing it. It’s fascinating. Your story about your friend was inspirational. I’m going to look for an Upper Cervical Chiropractor. I feel so very lucky to have found these sites. We’re all in this together, looking for answers, learning as we go along, and we’re all pulling for each other.

Jimmylegs, thank you for listing all the sites on nutrition. No, no neurologist ever mentioned nutrition to me for nystagmus, and I’ve been to many over the years. You’ve provided my reading for the weekend.

Years ago it was a long, lonely road to be diagnosed with MS. Today we have so much more hope and so much support.
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Postby uprightdoc » Sat Oct 09, 2010 12:29 am

Kathryn, You definitely have a brainstem lesion as noted on your MRI. It's on the cerebellum down in the posterior fossa. What is far more concerning is that you have "extensive bihemishperic periventricular and deep white matter lesions... and at least one in the deep cerebellar nuclei." Additionally, you have a family history of vascular problems related to dementia, diabetes and strokes. This puts you in a very high risk category for strokes. I strongly suspect that you have CADASIL migraines (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). Arteriopathy means problems with arteries. Autosomal dominant means you inherited the problems. Leukoencephalopathy means the arterial problems are causing degeneration of white matter (myelin) in the brain. CADASIL migraines are related to multi infarct dementia (MID) which is related to Alzheimer's. You also appear to have lesions in your internal capsule. All of these higher areas in the brain recieve their blood supply from the carotid arteries, the ones most commonly involved in severe strokes, not the vertebral arteries. Upper cervical care will improve blood flow through the vertebral arteries and relieve many symptoms. It will also help to prevent or limit further damage. On the other hand, I am seriously concerned that you may have genetic issues related to circulation. You need a thorough system review.
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Postby uprightdoc » Sat Oct 09, 2010 7:33 am

Fernando, the relief of the Lehermitte's signs is good news. On the other hand, you have lesions in the cord. In your case they are most likely due to circulatory stress. It would be interesting to know where the location of the lesions are in the cord as they probably indicate circulatory stress. Ask your clinico if he knows a good chiropractor. He already got half the job done. It would be a good idea to check the upper cervical spine as well. A significant portion of the blood to cord passes through upper cervical spine.
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