CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby cheerleader » Mon Nov 26, 2012 4:29 pm

I'm so glad that the NPH story I shared over on Facebook has helped Dania in her search! I've been looking into NPH since '09, when I heard neurologist Dr. Elliot Frohman speak about his shunting of NPH at the first CCSVI conference, and how CCSVI venoplasty reminded him of the success he saw in his patients after treatment.

It's been frustrating to see neurologists call my husband's improvements of fatigue, cognitive fog and heat tolerance "placebo", when shunted NPH patients results are seen as medical fact. Jeff has a stent high in his left tranverse sinus. Since its placement, he no longer has tinnitus or headaches. This endovascular treatment is approved for those with intracranial hypertension, tinnitus, and papilledema. Jeff had all of these symtoms since childhood, but got an MS diagnosis due to the numerous white matter lesions at his first MRI at age 44. As Dr. Flanagan says, these white matter hyperintensities are seen in ischemia, migraine, and traumatic brain injury with edema. And Dr. Frohman admitted he'd seen white matter lesions in his NPH patients, after they were shunted. It was the enlarged third ventricle which covered up the white matter lesions, and when the CSF was diverted, the ventricle shrank and the white matter lesions became evident. Here's Dr. Frohman's quote from 2009.
I have seen this happen in “normal pressure hydrocephalus- (NPH) Where there is a loss of gait, cognitive and bladder issues and the lesions disappear because the expanded ventricle swallows the lesion. I have shunted the brains of NPH patients, and they showed remarkable improvements. Again, the enlargement of the third ventricle precedes the changes.

and here's the note I wrote up about NPH and the discovery of Dr. Hakim, made in the 1960s--- for those on Facebook.
https://www.facebook.com/notes/ccsvi-in ... 7640167211

Thanks to all who are discussing the importance of CSF and venous return in MS, and thanks to Dr. Flanagan for his clear and brilliant observations on how the body's architecture plays an important part. I hope it brings answers for more people. We're getting there!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Nov 26, 2012 9:04 pm

Hi all, Joan are you saying that Jeff in essence had NPH and I add probably more vascular issues and this wasn't identified by dx?
I know its not what you are saying as such yet there is likelihood when you break down MS as it should be, rather than all the symptoms into one dx.
It is becoming common for people to have various treatment types with some success for some of the symptoms, never the same for two people, an MS snow flake thing.

To give an example Jeff and his treatment, Sarah Wheldon with her treatment, others with symptom change from AO treatments (Sharon Richardson?) each showing symptom improvements and 'a problem' with dx, yet the blood flow issues are the 'main character' which has driven a dx of MS.

Neuro's need to be shown the outcomes against the dx given by Neurology World Wide, to get them out from their 'alternative reality' about MS being 'auto-immune'!

'gards,
Nigel
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Re: CCSVI and CCVBP

Postby cheerleader » Mon Nov 26, 2012 10:05 pm

NZer1 wrote:Hi all, Joan are you saying that Jeff in essence had NPH and I add probably more vascular issues and this wasn't identified by dx?

Nigel-Probably closer to idiopathic intracranial hypertension (pseudotumor cerebri), rather than NPH--since he had drusen/papilledema and optic disc swelling that lead to peripheral vision loss as a child, with headaches, fatigue and pulsatile tinnitus as an adult. His left dural sinus was collapsed on MRV along with a missing left jugular vein, and after stenting that side remains open. I'll bet Dr. Flanagan has some great insight into all of this.
Here's a few papers on the endovascular/stenting treatment of IIH.
http://jnis.bmj.com/content/early/2012/ ... 8.abstract
http://www.ncbi.nlm.nih.gov/pubmed/19877792

Blood flow, CSF flow, edema, infection and ischemia could all lead to inflammation and immune activation. I'm glad we've got doctors like Dr. Flanagan looking at the mechanics.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Nov 27, 2012 4:06 am

dania wrote:Another thing that is also different with me is that I have never had any vision problems. Plus never suffer from fatigue. So if scarring can be caused from trauma how can my plaques/ scarring be determined if it is MS?



It is one of the enigmas of MS. The location and lesion load (quantity) of the scars have little to do with the signs and symptoms. Except for vision, cog fog and fatigue, many of the signs and symptoms of MS come from structures located in the posterior fossa, which is called infratentorial. Lesion are typically supratentorial. The tentorium cerrebelli is the tent-like covering over the cerebellum and posterior fossa.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Nov 27, 2012 6:03 am

Hello Joan,
Your husband is a very fascinating case. I will be covering Idiopathic Intracranial Hypertension(IIH/BIH/pseudotumor cerebri) in my book on headaches. As you probably know it is more commonly associated with young overweight females. High stents have been successful in treating IIH. I will be covering more on the role of stents and shunts in the correction of faulty cranial hydrodynamics in future posts on my website.

I discuss communicating and non-communicating hydrocephalus, as well as NPH a great deal in my book. Hydrocephalus is a contiunum of hydraulic problems that effects children and adults. Previously, it was mostly considered to be a childhood problem. Except for Adams and Hakim there was very little information available on NPH when I started and it was considered to be a rare condition. Early on I connected NPH to Alzheimer's and Parkinson's disease. I suspected MS but it was Schelling who helped me cement the connection of MS to NPH. Now there are many studies available on NPH. Moreover, they recognize the contribution of the foramen magnum and spinal compartment to faulty cranial hydrodynamics in the cranial vault and spinal canal.

I started with artificially deformed crania, hydrocephalus, Chiari malformations, Dandy-Walker syndrome, craniosynostosis, Paget's disease, basilar invagination, Morquio's syndrome, Marfan's syndrome and CCJ assimilation, syrinxes and meningomyeloceles to name a few of the pathologies associated with hydrocephalic conditions and faulty cranial-spinal hydrodynamics. All of the pathological crania I examined had open sutures. I also did comparative anatomical studies on whales, bats and giraffes due to the extreme cranial hydrodynamic challenges they contend with during inversion and deep dives. They all had interesting designs in their skulls and spines to contend with the challenge. Interestingly, whales use the VVP similar to humans. I also recognized the contribution of gender and race to cranial design and faulty hydrodynamics, which researchers are just starting to appreciate. Unfortunately, anthropologists dropped the ball because it is politically incorrect to talk about gender and racial differences. It is my contention that the indigenous people of Peru and Bolivia used cranial binding and trephination to cure hydrocephalus. If so they were way ahead of western science and more successful at treating hydrocephalus judging by the age of skulls I examined.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Nov 27, 2012 7:34 am

Hello Joan,
The other thing I find interesting thing about your husband's case is that from what I gather he plays trumpet. I looked into trumpet and trombone players, as well as competition power weight lifters because of the Valsalva maneuvers they perform, which are known to increase raise intracranial pressure. It always amazed me that Satchmo didn't blow up when he hit high powerful sustained notes. His eyes looked as if they would pop out. I also looked into marine and aviation physiology for similar reasons. Pilots and divers use Valsalva maneuvers to control brain circulation. Chapter 10 in my book is called, "NPH and Diverse Diseases."

I forgot to mention I also did a great deal of research into connective tissue disorders such as rheumatoid arthritis, psoriatic arthritis and lupus erythematosis. All three have been connected to NPH, which is most likely due to the degeneration in their spine caused by the inflammatory conditiion. I also studied traumatic brain injuries which are associated with high intracranial pressure. At the time, hyperventilation therapy was a new treatment for TBI. It is still in use, but unfortunately, it causes problems in most cases and is reserved now for extreme cases. Interestingly, whales hyperventilate when they surface from prolonged deep dives. Hyperventilation blows off CO2 which causes vasoconstriction and decreased blood flow to the brain. Decreased blood flow to the brain decreases intracranial pressure. Incorrectly done, however, hyperventilation has caused strokes and death in yoga practioners and underwater swimmers who used it to prolong breath holding underwater. They thought they were increasing oxygen levels by doing so. Unfortunately, some just pass out and drown without warning.
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Re: CCSVI and CCVBP

Postby cheerleader » Tue Nov 27, 2012 9:18 am

Brilliant, Dr. Flanagan! Your knowledge of the cranium and cerebral blood flow is a treaure trove. And your book has been a wonderful resource for me and Marie. So glad you and Dr. Rosa, Dr. Schelling and others have connected!
Yes, we'd wondered about Jeff's years of student and professional trumpet playing and valsalva. He lost his peripheral vision after starting the trumpet, but the eye specialist said it was drusen, and mentioned nothing about pressure--even though his optic disc was swollen. Jeff's first big flare at age 44 came after a solo trumpet performance and a subsequent trip to high altitude. A dangerous combo for him! In our years of travel together, he would develop altitude sickness while high mountain hiking. The pieces all came together after seeing his vasculature on MRV at Stanford. Thanks so much for your input and for engaging patients and caregivers here and on your website. The combination of genetic and environmental factors is what creates MS lesions, and it seems we're untangling the mess and learning how to slow the process.
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI and CCVBP

Postby dania » Tue Nov 27, 2012 10:04 am

Dr Flanagan I have been researching NPH and came across something interesting. It mentioned that doctors test people by draining some some spinal fluid and see if their condition improves. If so, they could be a candidate for a shunt. In Oct 2009 I had stem cells injected into my spinal column. Twice a week for 4 weeks. Every time I had an injection of stem cells my condition worsened. I even ran a low grade fever for a few days.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Nov 27, 2012 10:59 am

Dania,
Neurosurgeons use a acetazolamide (Diamox) and lumbar tap challenges to test for NPH and increased ICP as well as responsiveness to potential shunting. The test is considered positive if the patient's signs and symptoms improve.

It's interesting how you responded to stem cells. It sounds as though you had an autoimmune-inflammatory response.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Nov 27, 2012 11:21 am

I had horn players that also developed problems with their teeth due to the back pressure against the mouth and the vibration from the mouthpiece. In addition to intracranial anomolies and variants in venous drainage design such as in your husband's case, I suspect that young overweight females get IIH for different reasons. I will cover it in my next book. The cause is likewise related to upright posture.
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Re: CCSVI and CCVBP

Postby blossom » Tue Nov 27, 2012 2:38 pm

like dania i have never had vision problems, fatigue or cog fog. have always been told 1 lesion located on the cervical. at first it was back and forth - looked like an ms lesion to some and to some not. then i got the diag. probable ms and it was curtains it's like trying to shake a plague. although i voiced loud and clear about my neck problem and the tilting of the head it was like talking to the wall. although i am very dibilated at this point as like dania my care giver and even some chiro.'s have commented that i was different than most. i suffered no stiffness or numbness until after ccsvi t. and it came quick and is worsening faster than any other symptoms ever did.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Nov 27, 2012 3:16 pm

Blossom,
Your neck is clearly the cause of your problem in my opinion and the stenosis is most likely the cause of the cervical lesion. As far as the symptoms following CCSVI treatment is concerned, over-drainage of the brain can cause problems if it isn't matched by a proportionate increase in active and passive CSF production. I discussed over-drainage way back in the beginning of this thread.
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Re: CCSVI and CCVBP

Postby dania » Tue Nov 27, 2012 3:56 pm

I was still able to walk before I started mucking about with angioplasty. Angioplasty lead to the death of all 3 veins that were treated. Like Blossom I suffered from stiffness only after my veins died. Zero blood flow caused worsen of my condition very quickly.
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Re: CCSVI and CCVBP

Postby blossom » Tue Nov 27, 2012 7:03 pm

dr. flanagan, will or could this over drainage ever correct itself? the numbness i feel confident that the femoral nerve got injured at the point of entry to do the angioplasty-that i woke up with the leg was like they had shot novicane in it and has worsened. but the stiffness started a short time later and is worsening as are the previous symptoms but in the given time table of my yrs. of these symptoms it is faster.

as of a few mo. ago doppler testing here says i still have flow so i'm different than dania in that respect. although i have never had the azygos vein checked. i'd venture to say most of the ccsvi treated people haven't unless they were treated more than one time. if it restenosed and the jugs stay open would this cause even more turmoil in the flow?

you know i agree with what you say about my neck problems and my symptoms. and i know how hard it can be especially in the shape i'm in now to address this. getting older and rusty doesn't help either. but, i'll try to keep plugging. as far as i'm concerned my life was stolen not only by fate but by doctors "and there were many" that instead of at least looking into deeper what i was saying and even as a possibility tried to fix it instead of treating me like a kook--i would not have stood there and said "see i told ya so" i would have hugged them and thanked them--and still would. but it's a needle in a hay stack..
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Nov 28, 2012 5:44 am

If there is a problem with over-drainage due to venoplasty or stents it cannot correct itself unless the vein restenoses, which is unlikely if a stent is used. Over-drainage problems would occur in the upright position if the passive production of CSF is impaired and cannot keep pace with venous drainage.

The passive production of CSF is dependant upon a pressure gradient caused by upright posture. The passive pressure gradient is determined by the difference between CSF pressure in the ventricles and pressure in the superior sagittal sinus (vein) at the top of the head. In the upright position, pressure in the superior sagittal sinus at the top of the brain is in turn effected by pressuure in the jugular and verebral veins at the bottom of the brain (waterfall). Valsalva maneuvers cause venous back pressure, which decreases the passive CSF pressure gradient. Blockage of the vertebral veins likewise decreases the CSF pressure gradient, which can effect the passive production of CSF. Theoretically speaking, internal jugular venoplasty and stents should increase the passive CSF presssure gradient so in most cases it shouldn't be a problem. The problem is that aging can decrease both active and passive CSF production despite the pressure gradient. If CSF production doesn't keep pace with increased venous drainage, which also increase CSF drainage, then the brainstem will pressure cone (sink) into the foramen magnum.

The problem in your case Blossom is that you never had "definite" MS. Instead, you have "probable" MS, which means it is questionable. On the other hand there is no question that you have spondylosis and the spurs are large enough to almost contact the cord and probably do if you bend your neck enough. You also have hyperintensity signals in the cervical cord which are most likely due to chronic edema or ischemia. The spurs may have also become adherent to the cord and causing local tethering and consequently Lhermitte's sign. Chronic tethering tension can cause degenerative changes in the cord. As I have mentioned before, Dr. Wise Young, who is the neurosurgeon I mention in my book that did the Rutger's University study on circulation in the cord, stated that venous hypertension is one of the most overlooked causes of ischemia and degeneration of the cord. Dr. Young specializes in spinal cord injuries. It is my opinion that spondylosis, stenosis and scoliosis (kyphosis) are the most overlooked causes of venous hypertension in the cord.
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