CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby costumenastional » Tue Oct 25, 2011 4:41 am

Thank you Doctor.
No nation on earth deserves the consequenses of globalization under the mask of fake growth. It is time for this balloon to burst and since we are alive we got to give the fight towards this direction. One way or another...
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Oct 25, 2011 4:57 am

blossom wrote:dr. flanagan, the way i'm understanding and trying to get done is the endroscopic surgery to the spurs, stenosis and disc.which is causing narrowing and pressure on this vital cervical area.

even if there would be something going on with the cord why could they not do this first? i may be jumping the gun because these guys only read the report- where you have read the report and looked at the mri and x-rays. florida got both the report and the mri and seems there would be no problem doing the endroscopic-i know they do some of their own testing but they did not mention this spinal cord stuff.

i understand completely that there is no way of knowing for sure how much if any improvement there will be.

no, i have no neurologist reports about my strengths.

i have to have the ammunition yet try not to lock horns with them as you say.


Blossom,
I can't imagine why they would want to do open surgery unless they thought there was a risk to injuring the cord. There are far more risks associated with open surgery than endocopic surgery.

Dr. Weimer is a DABCO so I am sure he checked the strength in your upper and lower extremities, as well as your reflexes and pathological reflexes (Babinski, Hoffman, fine finger movements and other upper motor neuron signs).

You may not be ready to tackle the neuros and surgeons yet but you are getting up to speed fairly quickly and you will soon be ready to take them on.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Oct 26, 2011 2:57 am

Blossom,
This is not an endorsement but have you contacted the group in the link below. They do laser endoscopic surgery and have several facilities close to you.
http://www.laserspineinstitute.com/about/locations/
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Re: CCSVI and CCVBP

Postby blossom » Wed Oct 26, 2011 12:34 pm

dr. flanagan, yes, this is the group that mentioned spinal cord. they only read the report and did not see the mri. they want me to go there with my mri and they do their testing. the dr. is an orthopedic surgeon.

i just got an appt. with a pitt. neurosurgeon. he does microdiscectomy. i gather they do not use lazer but it is not as invasive as open surgery. i called today was shocked to get in nov.1.

please check your e-mails. i don't want to screw up. i need some advice. thanks again.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Oct 26, 2011 12:56 pm

Blossom, You are doing a good job in your search and have two good leads. I look forward to hearing what they have to say.

The orthopedic surgeon at the Laser Institute is probably being conservative until he sees the MRI but the spurs aren't actually touching the cord. They are just very close. As you have noticed, when you tilt your head forward it gets worse. As I said orthopedic surgeons have plenty of experience with endoscopic surgery. They have been doing arthoscopic (endopscopic) surgery on the shoulders and knees for many years.

I haven't received anything yet, but I will watch for your emails.
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Re: CCSVI and CCVBP

Postby euphoniaa » Wed Oct 26, 2011 6:00 pm

Heads up - I'm starting with a long, boring history for Dr Flanagan first, then a couple of questions. I was going to just post my questions quickly, but decided they needed some history for an explanation. Sorry, but it turns out that I'm so old I have a LOT of history. :smile:

Hi Dr. Flanagan,

All my adult life I've assumed that my body's lifelong weirdnesses were due to my many other medical issues. In fact, the main reason I didn't get diagnosed with MS for 30+ years is because I've always assumed that most of my problems were due to a couple of childhood whiplash incidents. And I had always read that whiplash injuries are likely to cause any number of problems later in life. I treated them on that assumption, and my approach usually worked.

Most of these episodes (lots more than I'm listing) were so obviously affected by neck position that I never even bothered to go to regular GPs to have them checked out. When I woke up in a panic (30 yrs ago?) early one morning with my ears roaring, I naturally assumed "it's my neck again." I even managed to quiet it a bit by rearranging the pillow, but immediately made a chiropractic appointment.

The chiro adjusted my neck AND lower back and the noise quickly went away. However, after a few weeks of the exact same adjustments with no new evaluations, I started to develop a limp. So I stopped going.

Years later (20 yrs ago?) I got a severe case of Lhermitte's (didn't know it had a name until I got to MS forums), but, assuming "it's my neck," of course (and with insurance no longer covering chiro), I decided that if I was going to have to drag that leg around the rest of my life I should make it easier for myself. I didn't even consider going to a regular GP – I knew "it was my neck."

So...I switched my entire lifestyle to a healthy diet (lost lots of weight), and strenuous exercise, paying attention to my neck, and it worked. Lhermitte's was gone, and I felt fabulously healthy. I kept getting stronger and healthier. For years. I still use a rolled up towel behind my neck for most floor exercises – from the early chiro's suggestion.

Then...I got a surprise diagnosis of MS, and also HNPP (a hereditary peripheral neuropathy). Since I know my body pretty well, I've always maintained on forums that "It's not always MS...it's not always MS...it's not always MS..." I often blame mine on HNPP, but seriously, I have never been able to pin a single symptom directly on MS.

My MS is definite, though, and my first set of MRIs (in 2003) showed a brainful of classic (OLD) MS lesions. See my MRIs here: general-discussion-f1/topic16335.html

My MRIs don't show spinal lesions, according to the radiologist's report. But the C-spine MRI also showed plenty of "diffuse, discogenic degenerative change" throughout the cervical and upper thoracic spine. The report also mentions cervical spondylosis, disc bulging, and endplate spurring. It's always been obvious to me that those childhood injuries had a detrimental effect.

So now my 1st question(s) (there will be more later): The short version is, I've been getting bi-weekly massages from a great therapist for a couple of years, but why does my left leg (the MS one) burst into Restless Leg spasms halfway through almost every massage? And, do you have any suggestions to make it stop? Does RLS ever seem to have a cervical cause?

Even though I used to get RLS years ago, I figured out my triggers (mostly food triggers) and nowadays the only time I get RLS at all is exactly halfway through an otherwise relaxing, hour-long massage, once she starts working on my head and neck. First I wondered about CCSVI... But, it's finally dawned on me that, as usual, it has something to do with my position rather than what the therapist is doing. It's always at the same point in the massage – as soon as she starts working on my head and neck (upper cervical area in general, I guess), but that's also right after I turn over onto my back after my head's been resting awkwardly on a pillow.

We're both stumped about why it happens, but we both just go with it. I kinda lie back and visualize drawing all the bad stuff in my body down to that leg, and then kicking it out through my MS foot. I even manage to doze off between spasms. She's tried being super gentle, tried avoiding certain cervical areas, tried relaxation/visualization techniques, but the spasms almost always come, and massaging my jerking leg doesn't make them stop. Then as soon as the massage is over and I sit up, they're gone. I know she does some craniosacral stuff, but not sure exactly what.

I've often posted about how weird conditions like RLS and Raynaud's are not really MS (or CCSVI) symptoms, and even Lhermitte's is not exclusive to MS (it's not always MS...it's not always MS...it's not always MS). But even though I know I have other medical issues, I'm starting to be even more convinced that usually, it really DOES have something to do "with my neck." I'd love to figure out how to finally make it through an entire massage without RLS now that I'm pretty sure where it's coming from.

Question 2. Now that I've begun to identify an even more extensive connection with my cervical problems than I previously thought, I've also been wondering if some of my exercises are contributing to some of my new walking issues (or they may be due to yet another new medical problem). How can I figure out what exercises are the safest and which to avoid?

And...one reason I've not followed this thread much (besides its impossible, unwieldy length (plus I was gone for months)) was because the title was so confusing :smile: ; I still don't know what CCVBP is and I have only minor CCSVI-type symptoms.

Thank you for your future advice!

P.S. Here's one of my posts describing my experience with RLS: post83701.html?hilit=RLS#p83701

P.P.S. When I look on the NUCCA website I don't live anywhere near an upper cervical clinic. And I know I don't live anywhere near a doctor for CCSVI testing, treatment, or followup.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Oct 27, 2011 4:51 am

Hi Euphonnia,

CCVBP stands for chronic craniocervical venous back pressure. It can be caused by inherited (genetic) design problems, congenital problems acquired during pregnancy and birth, and acquired conditions due to aging and injuries that affect the cervical spine, such as misalignments of the upper cervical spine and spondylosis, scoliosis and stenosis of the lower spine. Among other things, itt is my contention that these conditions can affect blood and CSF flow in the brain and cord and lead to chronic neurodegenerative conditons and diseases such as MS. It sounds as though you have advanced spondylosis similar to Blossom and Happy Poet and many others who have contacted me.

While diet and exercise are terrific they don't do anything to change the underlying problem in the spine except that losing weight reduces the mechanical loads. As you noted the cause of the leg spasms occurs after you have been face down with your head turned which aggravates the cervical spondylosis (degeneration). Tics, spasms, tremors, fasiculations etc., are wind conditions in Traditional Chinese Medicine because they are associated with shaking. Parksinson's disease was originally called a "shaking" palsey. Wind conditions are due to many causes. Among other things they can be cause by poor circulation and low chi. Chi is energy. It is a combination of air, water, food and neurological energy. I don't have the space or time to go into detail here but cervical spondylosis affects blood and CSF flow to the brain and cord. It also increases pressure acting on the cord which decreases the electrical energy that flows through it. Your cervical spondylosis is the affecting your cord and the circulation to your legs. My first book is about the brain. The next one will cover more on the cord.
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Re: CCSVI and CCVBP

Postby blossom » Thu Oct 27, 2011 6:21 pm

hi dr. flanagan, your reply to the above post you said that ccvbp can be caused by inherited genetic spine problems.

in cases where say the mother has ms -both her kids do and they are suspecting the grandson does - i wonder if the chiro.'s doing the upright mri research have tested cases like this? i know it was concerning trauma but a screwed up spine is a screwed up spine regardless of how you got it i'd think. that i think would be very interesting and more proof and kind of pin pointing things--especially if it happened that they all had that particular spinal problem. what do you think?---or is my head on crooked again?
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Re: CCSVI and CCVBP

Postby euphoniaa » Fri Oct 28, 2011 5:01 am

uprightdoc wrote:While diet and exercise are terrific they don't do anything to change the underlying problem in the spine except that losing weight reduces the mechanical loads.


Thanks for the explanation of CCVBP - it may help others catch up a bit, too. I've been checking out your website, but I'm not good at website wandering - I tend to go in circles. And I forget which parts I've read before. :smile: I prefer my info in one place like in a book, with a pile of hi-liting pens, bookmarks, and colored post-its at the ready, so I may have to wait until I can do that.

I have to agree with you about diet not changing underlying spinal structure, but I still wonder whether some of my exercises have been contributing to my cervical problems. Don't you think that's possible? I've always thought that even posture can have at least a little effect. Isn't that what Mom always taught us (Sit up straight! Don't slouch!)

Anyway, here's my complete C-spine MRI report from 2003. If the spine keeps degenerating with age, is it possible that I've been hastening it along with inappropriate exercises? Like the way I lie on my back and roll up on my neck to lift my legs over my head? Every day?

Quote from my 2003 C-Spine MRI report:
There is diffuse discogenic degenerative change evidenced by desiccation throughout the cervical spine and also involving the upper thoracic spine. Mild disk space narrowing is seen at the C4-C5, C5-C6 and C6-C7 levels and accompanied by broad-based disk bulging. Cervical spinal cord and canal have normal signal shape and appearance. There are no cervical spinal cord lesions seen.

C3-C4: There is a tiny central endplate spur resulting in focal effacement on the thecal sac with no central canal or lateral recess stenosis.

C4-C5: There is moderate anterior effacement of the thecal sac secondary to broad-based disk bulging and endplate spurring with no central canal or lateral recess stenosis.

C5-C6: Moderate anterior effacement of the thecal sac is secondary to broad-based disk bulging and endplate spurring.

C6-C7: There is mild anterior effacement of the thecal sac secondary to broad-based disk bulging with no central canal or lateral recess stenosis.

IMPRESSION: There is mild cervical spondylosis predominantly on the basis of endplate spurring and disk bulging without evidence of central canal stenosis or focal nerve root impingement.


I remembered another long-time issue that I've always attributed to "my neck":

I had to stop sleeping on my back in early adulthood because both my arms would go paralyzed to my sides (not numb) and immoveable, so to get up in the morning I'd have to kinda throw my body to one side until I got it into a position where it loosened up. Then it would be gone once I finally got it into a different position (which tells me it's not an MS brain lesion...). I still had it at least at the time of my MS dx, but I have to sleep propped up due to reflux nowadays (yet another non-MS issue), so I don't roll onto my back by accident any more to test it. And of course, I never went to a doctor for it. :smile:

In fact, I told my family about it in case I'm ever lying on my back unconscious in a hospital bed for an extended period of time. And I've always notified my dentists/beauticians that they may have to help me out of the chair if they keep my head back too long. :smile: Seriously.

I have no idea how serious my cervical issues are at this point, but I know they're a big part of my discomfort and I wonder if I can improve that some way. I just saw a brand new Upper Cervical sign on the main street of town, but the name hasn't been listed on the NUCCA site.

Thank you for your advice.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Oct 28, 2011 9:47 am

Hi Blossom,
There are many skull and spinal design issues that can be passed on that can cause problems with blood and CSF flow and lead to neurodegenerative diseases such as MS. I suggest in my book that the indigenous people of Peru and Bolivia may have passed on design problems in the skull that predisposed them to hydrocephalus. They may have used cranial banding to control the hydrocephalus, which resulted in severe deformation of the skull but survival of the patient.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Oct 28, 2011 9:56 am

Hello Euphonia,
You have degeneration of your spine causing compression of the thecal sac that surrounds the cord. The thecal sac contains the vertebral veins, which means you have stenosis of your vertebral venous pathways at multiple levels in your cervical spine.

It sounds like you also have compression of the vertebral basilar artery. Tilting your head back as in a hair salon of dental chair can further compress the vertebral arteries and cause temporary ischemia (decreased arterial blood flow) to the brain similar to a mini stroke. Consequently, the condition is sometimes referred to as Beauty Parlour Syndrome. Certain exercise may similarly aggravate you condition as will certain positons such as when you get a massage.
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Re: CCSVI and CCVBP

Postby NZer1 » Sat Oct 29, 2011 1:19 am

Quote "Damaged, misaligned and strained joints in the spine are under abnormal mechanical loads. The cracking noises are caused by dry damaged connective tissues and joints, as well as gas bubbles. When compressed sufficiently gases cavitate and pop like a balloon."

Thanks on this Dr.. I now have a new line of thought and some questions. When a person 'breaks' their neck, what normally happens, eg I assume that the disc material separates from the vertebra, whether it is complete or partial? Then the only support for alignment is muscle?

If my memory serves me correctly there has been broken necks here. My own neck injury was suspected broken neck, on two occasions. I also remember Graham Dobson talking about C2 being cracked often and that was the reason for some of the neck xray poses. My thought is about healing, does the disc material reattach?

Many disc bulges are around C5-C6 which in my case is from forced flexion and probably work related as well. Is this a type of injury like a break?

If the disc material doesn't heal/reattach then there will be ongoing issues with the weakened disc? Is this also why discs bulge sometimes?

The concept that there is air popping in the joint? Could this be in a tear of the disc material? Where does the air come from and go to, what is it 'caused/created' by?

At the moment I have been painting in a tight confined space and have been hunched up allot., every time I move my neck to straighten I get repeated popping. Is this air trapped in a disc and only moves around in a confined space and is compressed in various positions?

In the area between the thecal sac and the vertebra and discs, the passage as such through the spine, is that area a sealed space? And is it fluid or ? that separates/lubricates the cord from the bony structure?

Could there be pressure build up in the space between the cord/sac and spine/bones that could compress the cord? CSF is inside the sac but what is outside and could it be a reason for impingement?

Thanks
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Oct 29, 2011 3:34 am

G'day Nigel. I'm on my first cup of coffee.

Neck fractures occur when the parts of the bones of the spine break off. There are many different types. Vertebral fractures also occur when the end plates of the segments of the spine collapse, which is called a compression fracture. The cartilage (discs) may or may not be affected but it doesn't fracture.

Cartilage (discs) are soft tissues that get overstretched and torn or over squeezed and cracked from overloading. The annulus rings of the disc surround a ball shapped gelatin like material, called the nucleous pulposis, which is under pressure with lifting, bending twisting etc. Excessive loads or weakness in the wall of the annulus can cause the nucleus to herniate, that is, to tear through the annulus and cause a buldge. If it tears all the way through the outer wall the nucleus pulposis leaks out. Over time the damaged discs dry up and degenerates, which causes them to thin and provide less separation between segements, decreased range of motion in the neighboring segments and less support for the spine. It can also pinch nerves. Cartilage (discs) don't reattach and they don't heal well at all. Surgeons are experimenting with replacement devices for cartilage.

The mostly hydrogen "gas," not air, bubbles come from blood and joint fluids such as hyaluroinic acid.

The thecal sac is the space between the inside wall of the spinal canal and the outer covering of the spinal cord. Consequently, it is also called the epidural space, which means on top of the dura mater outer covering of the cord. The thecal sac contains the epidural veins of the vertebral venous plexus. It also contains loose fat. There is no empty space but the contents are compressible. It is my theory that compression of the thecal sac from spondylosis (degeneration of the spine) increases local pressure acting on the cord which decreases blood and CSF flow in the area.
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Re: CCSVI and CCVBP

Postby whyRwehere » Sat Oct 29, 2011 1:40 pm

Hi Dr Flanagan,
It's been a while. You said:
uprightdoc wrote:Hi Euphonnia,

It sounds as though you have advanced spondylosis similar to Blossom and Happy Poet and many others who have contacted me.

While diet and exercise are terrific they don't do anything to change the underlying problem in the spine except that losing weight reduces the mechanical loads.

Well, this is a bit depressing, because I can see that my husband has some issues with his spinal column from his latest MRI, and when I read what you wrote, I feel like there is nothing to do for it. Maybe you forgot to say that part?!
Why
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Oct 29, 2011 2:13 pm

Hello Whyrwehere,
While you can't make the spinal problems go away with diet and exercise you can manage them. I have more joint problems than most people and have been told that I need major surgery on both shoulders, surgery to fix a disc in low back, possible surgery on discs in my neck and right hip surgery. Oh, I forgot to mention the poorly healed Colles fracture and consequently deformed very creaky cracky right wrist.

I have been exercising most of my life and continue to do so, so despite the less than stellar appearance I am actually fairly fit for my age. I have also been getting adjusted by chiropractors since I herniated the L5/S1 disc in my low back in a construction accident when I was in my early twenties. Chiropractic got me back on my feet without the radical back surgery that was being done at the time. That's how I became interested in chiropractic as a career.

Taking care of the musculoskeletal system is very helpful in manage most types of spinal and other health problems no matter what. Diet is also important to the health of all tissue including the nervous and musculoskeletal systems.

I also see the possibility of some interesting surgerical solutions for neurodegenerative conditions that are here now and some on the horizon but the surgeons first need to see the connection.
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