CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby blossom » Mon Jun 16, 2014 5:32 pm

hi dr. Flanagan, this was on tims a while back. I know there are tons of different massage techniques as there are chiro. techniques. then finding someone qualified and good enough is another bridge to cross. would you have any knowledge of what type of massage they are referring to?
I was thinking of the gentle cox chiro. table technique although that's not considered massage. it would be like finding a needle in the haystack finding someone around here. any input?

Actress tells of revolutionary MS treatment(29/07/13)
Actress Alison Peebles has spoken of a huge improvement in her multiple sclerosis after a revolutionary new treatment.

She had been expecting the primary progressive multiple sclerosis that has blighted her life to quickly leave her dependent on the use of a wheelchair.

However, the leading Scottish actress, whose TV credits include BBC's River City and Shetland, believes a new physiotherapy has greatly improved the quality of her life – and delayed the need for a chair.

Peebles, from Wester Hailes, has been receiving treatment from the Korean Physiotherapy Clinic In Edinburgh, where therapist Chongsu Lee uses a technique that involves gentle manipulation of the spine and surrounding soft tissue to release tension.

It is claimed that as tension around the spine gradually eases off, blood and lymph circulation and nerve function improve.

"The benefits of the treatment have been quite dramatic," said Peebles, who has starred as Lady Macbeth on stage. "I was collapsing all the time as I had poor balance and strength. I was mentally and physically exhausted.

"Now, after 18 weeks of treatment, my walking, balance and vision are hugely improved and my body is much more flexible. I still use a crutch, but if I continue like this, I feel optimistic that I can keep on my feet and delay the imminent need for a wheelchair."

Peebles, 53, a co-founder of the Communicado Theatre Company, has suffered from primary progressive MS, which is characterised by a worsening of symptoms, since 2001.

She wrote and performed the 2012 theatre play My Shrinking Life as a response to her disability, and as a reflection on what it means to play a part in which she was unwillingly cast.

The actress and director continues to work. She will direct the play Bite The Bullet , by Sandy Nelson and Keith Warwick, at the Edinburgh Fringe in August. "I am more supple," I am standing straighter, and I have more energy," she added
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jun 17, 2014 11:15 am

Hi Blossom,
There is nothing new or magical about what the therapist is doing. Manipulation of the spine and therapeutic massage can be very helpful in treating certain cases. It can also prevent secondary comorbidities.
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Re: CCSVI and CCVBP

Postby blossom » Tue Jun 17, 2014 8:16 pm

I was wondering if the massage by what is mentioned has a particular name you might know of by the little info. given. yes, I agree all massages are beneficial but if it is a certain technique to inquire about it might help. ins. pays zero so to save money, time and get the most out of it. I've gotten a good many massages through the yrs. they all feel great of course but got nothing near what is described in the article. there were times I got them regular and at length.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jun 18, 2014 3:31 am

The information regarding the case and treatment is far too sketchy to comment on and "gentle manipulation of the spine" is far from new or revolutionary, neither is massage. Both can be very helpful in certain cases if applied correctly.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Jun 19, 2014 2:04 pm

Robert,
The bottle arrived. It took a long time to save and extract the message and then I couldn't find it in my downloads.
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Re: CCSVI and CCVBP

Postby Robnl » Thu Jun 19, 2014 2:22 pm

If you extracted the file, the results will be in c:\mrirob.
Dont know where your downloads are saved.

But its there, at turtlespeed :lol:
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Re: CCSVI and CCVBP

Postby dania » Mon Jun 23, 2014 11:16 am

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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jun 23, 2014 3:03 pm

Some dentists have very vivid imaginations. Only someone with very little knowledge of anatomy, physiology, pathology of the skull and spine, not to mention basic physics could believe such nonsense. The hyoid bone is suspended in muscles and fascia. It doesn't articulate with any bones in the skull. It's purpose is to provide a base of attachment for the tongue and larynx muscles which lack the strength or leverage to misalign the head and neck. The jaw joint and the muscles of mastication have very little impact on the many different types of well-documented conditions, malformations, misalignments and degeneration of the spine. A hinge joint in the face cannot cause destructive loads or leverage to cause misaligment and degneration of the spine. Trauma, over-exertion, common chronic repetitive strains associated with activities of daily living and aging have a far greater impact on the condition of the spine. In my experience, very few people have TMJ conditions that require dental splints. TMJ splints work indirectly by atlering the craniocervical junction. For example, when you open your mouth the skull moves upward on atlas (C1). Putting a splint between the teeth depresses the jaw, which similarly moves the head on atlas. TMJ splints may have a place in the co-management and treatment of certain cases but it isn't the best way or place to start, especially when it pertains to conditions related to the spine.
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Re: CCSVI and CCVBP

Postby Rosegirl » Tue Jun 24, 2014 5:20 am

There are a number of holistic dentists (not general dentists) who believe they can relieve some symptoms related to neurologic diseases like MS. Their treatment deals with a number of different approaches. Here are a few citations that give a glimpse of their work.

Dr. Anthony Sims (DDS) has published a paper about how misalignment of the jaw can cause gait and balance problems. He has also published papers on treating other neurologic conditions. Among other things, a misaligned jaw can disrupt the function of the trigeminal nerve. The problem begins in the skull and then disrupts function throughout the rest of the body. http://www.bodymovementdisorders.com/us ... osture.pdf

Dr. Darick Nordstrom (DDS) uses a device called an advanced lightwire functional appliance (ALF) both as an alternative to using braces to straighten the teeth and impact cranial function. That, in turn, can ease neurologic problems. http://www.youtube.com/watch?v=QxnR3BurUdM

Dr. David Williams (DDS) in Canada writes that “The main motivation for this continuing this work came from the number of MS patients who were treated for bite discrepancies had rapid and complete resolution of their MS symptoms. Many patients noticed slight improvements but failed to have the dramatic recovery. It was very clear that there was more going on than just jaw clenching and bones moving.”
http://essentialms.ca/professionals.php?page=cranial

Just as some of your patients might get immediate relief after a treatment, some of these doctors have also posted videos showing just that. So maybe it’s a fake, or maybe it’s true but only for some people. Is there any treatment that works, every time, for everyone? Especially with a condition like MS that has so many types of symptoms (vision problems and headaches, gait problems, etc.), this approach is relatively inexpensive, non-invasive and without the serious side effects of drugs.

I sincerely appreciate your on-going efforts to educate patients and protect us from harm by other doctors. But just as you are rightfully indignant about other medical professionals who dismiss your work, perhaps a review of a single article by a manufacturer is not a valid reason to dismiss the efforts of other doctors.

We patients are searching this site – and others – because the doctors we have seen have not restored our health. With the realization that they cannot help us, we are abandoned by them without so much as a hint of possible alternative treatment. And for some of us, that lack of hope -- because we now have no idea of any way to relieve our symptoms -- is a crushing blow.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jun 24, 2014 7:26 am

I didn't say that TMJ splints don't work. In some case they do. They work by altering the alignment of the craniocervical junction. I explained why in the previous post. The theory behind dental TMJ therapy, however, is utter nonsense. Dentists have no special training and minimal background in anatomy, physiology or pathology of the spine so it is easy for them to make ridiculous claims that most orthopedic surgeons, neurosurgeons, anthropologists and engineers would find preposterous. The TMJ has a minimal impact on conditions related to the craniocervical junction. It has nothing to do with: design flaws such as hypoplasia of the posterior fossa, platybasia, craniosynostosis, hydrocephalus, normal pressure hydrocephalus, Arnold-Chiari malformations, syrinxes, spina bifida, malformation of the craniocerivcal junction, laxity and malformations of the upper cervical ligaments such as in Ehlers-Danlos and rheumatoid arthritis, tears of the uppper cervical ligaments and muscles from trauma, spondylosis, stenosis, scoliosis, malformations of the dural sinuses, malformations of the vertebral-basilar arteries, faulty craniospinal hydrodynamics etc., etc. Those problems are related to the design of the skull, spine and circulatory system of the brain and cord.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jun 24, 2014 7:37 am

The case below recently contacted me. Her case has nothing to with TMJ. It has everything to do with genetic design flaws.

Following is a list of my Diagnoses/Symptoms. There is also a strong family relation to many of the issues. I would love to hear if you have any opinion or suggestions for me regarding my conditions.

-H. Perkins
-Female, Age 24
-Spina Bifida Unsecified region with Hydrocephalus
-Cerebellar Tonsillar Ectopia (with “tonsillar beaking”
-Low T1 signal at C4 and C2
-Hypermobility (mimics Ehlers-Danlos regarding collagen defects and flexibility)
-6mm syringohyrdomyelia at T9-T10
-AVM of the right vertebral artery (I am not sure where but it was seen in a brain MRI but not in a cervical MRI)
-Chronic sacroiliac joint pain/Sprain
-Piriformis syndrome of right side
-Degenerative Disk Disease “relatively isolated” to the lumbosacral junction
-Mild Disk Desiccation
-Facet arthropathy which is most prominent at L5-S1
-Non-compressive Synovial Cysts on right side of L5-S1
-Headaches (Severe pain and “flooding” feeling in the head, then on average 4-5 days straight with headaches.) Location: back of head, right side, and sometimes crown
-Sciatica
-Lumbago
-Paraplegia/Paresthesia in both hands, right arm, both feet, right leg
-Vit B and D deficiencies
-Chronic Pain (In just about all affected areas) Pain started to affect everyday life at 10-12 yrs.
-No injuries (all congenital isues)
-Otherwise healthy
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jun 24, 2014 7:41 am

Here is another interesting case that has nothing to do with TMJ. I have many of these types of cases. None are related to the TMJ.

by Marie
(Seattle, WA, US)

I was just diagnosed with a "forme fruste" Chiari malformation of 3.5 mm revealed on an upright MRI. My MRI also revealed a right lateral subluxation of c1 on c2, mild disc bulges on c-4-5 and c-5-6 and "posterior longitudinal ligament prominence or central subligamentous extrusion at the c-5 level partially effaces ventral CSF.

What prompted my doctor to order an MRI was persistent tingling in my feet and in my ring and pinky fingers of my hands bilaterally. I also had a spot in my neck that kept popping out every few months and then I'd get horrible muscle cramp in my neck. I also have Ehlers-Danlos syndrome hypermobility type as well as POTS and TMJD which has caused a great deal of head and jaw pain due to a chronically subluxing jaw. I was 100% healthy and symptom free growing up prior to a serious car accident in 2007 where I sustained a bad whiplash injury and broke my nose. Shortly thereafter I was diagnosed with POTS due to persistent heart palpitations and tachycardia upon being upright.

Although my POTS is finally under control and manageable, I started having vertigo attacks last year upon laying flat or on my right side. The doctor diagnosed that as BPPV or benign paroxysmal positional vertigo which I still seem to suffer from but not as severe. Now it's more that my balance is just off all the time especially when walking. My headaches are still present but much better than they were at first.

My question is, can resolving all my neck and spine disc issues possibly help reverse my chiari non-surgically? With enough of the right PT, chiropractic, strengthening, etc? There are no neurosurgeons in my state or on my coast for that matter who I would feel comfortable having surgery with as they don't routinely see chiari and eds patients around here. Which would mean I'd have to go to the east coast for surgery which would be a huge ordeal. So I'm looking to avoid surgery while improving my quality of life symptom wise. Any suggestions much appreciated.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jun 24, 2014 7:53 am

Here is another good case that has nothing to do with TMJ and everything to do with trauma to the cervical spine but most dentists wouldn't know that. They have no training in examination and treatment of the spine.

Hi, my name is Maria and I am currently 46 years old. Back in April 2006 I was involved in a high speed car accident where I hit a stationary car on the freeway. The last second I turned the car to the left and most of the impact was on the front right of the car. The airbag did not deploy and I walked away from the car accident with no apparent injuries. Police and ambulance arrived and once looking at damage to cars insisted on a hospital visit. X-rays were taken and I believe all was fine so after 8 hours released myself. The next day everything was locked up and I could not move, neck feeling especially sore. Got to see my local Dr the next day who prescribed anti-inflam’s and valium. A few days after the accident I had what I can only describe as a seizure where I had a cup of coffee in my right hand and it started shaking violently then I slipped off the couch and according to my partner passed out for a few seconds spilling coffee everywhere. I have never suffered seizure’s in the past nor ever had one since. Mentioned it to my Dr again who put it down to stress from the accident.
Six months after the accident it became obvious my right hand was not working properly. Had great difficulty pitching poker cards in my profession as a croupier. While trying hard to keep my right hand steady I found my right leg would shake uncontrollably under the table. Back to the Dr who said I was too young for Parkinsons disease but sent me to a neurologist. After several neurological opinions they all came back with Parkinsons disease and said the accident had nothing to do with it. My MRI of the brain came back all clear but they were all confident. Six years past and I refused all medications wanting to wait and see how far the symptoms progressed. All tremors remained on my right side only and I still remain employed as a croupier dealing only left hand roulette and baccarat. My right hand is used sparingly and sometimes I walk and feel as though I am dragging my right leg. To my understanding PD spread through the body a lot quicker than that and I would have expected progression on my left side. Went back to Dr insisting on more test especially my neck. Finally an MRI showed impingement at C-5 C-6 C-7. One neurosurgeon believed the tremors in my arm were from my neck and could be resolved via a verterbral discectomy. Two other neurosurgeons were in disagreement and agree that I have whiplash injury from the car accident but believe I also have PD and they are two separate injuries and do not believe they are linked. Call me a sceptic but I do not believe in coincidence. Can anyone help.
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Re: CCSVI and CCVBP

Postby Robnl » Tue Jun 24, 2014 11:31 am

Yep, i read also such stories on dutch fora; car accident with neck trauma 8 years ago, several complaints, complaints fade, come back few years later, yeah...looks like ms......huh?

They got no idea what causes ms or pd....but if you got symptoms that are seen with ms/pd patients....
On my initial mri it was even on the sheet; in the spine a protein is seen that's also seen in ms-patients 8)
Never checken again, is it still there?
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Jun 24, 2014 1:26 pm

Robert,

I was able to extract your message from the bottle but it got swallowed and is somewhere in "never never land" on my computer. I can't find it anywhere. It must be the Dutch codes you used.

It took me a "duh" moment or two to figure out what a Dutch fora is.

It's amazing that with all the latest studies and technology, never mind common sense, most medical doctors still don't see the connection to trauma.

You may or may not still have "myelin basic protein" or "myelin precursor protein" in you CSF. Knowing whether you have it or not isn't that useful to treatment. It is simply a sign that you have myelin breakdown or an inability to clear breakdown byproducts.
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