CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby dania » Tue Jul 09, 2013 3:13 pm

I saw my neuro today about my scar tissue in my neck.I have not seen him in 3 years but I have kept in touch with him through emails.Telling him every treatment/procedure/surgery I have done and what my results have been.I was there for 2 hours. I showed him how I am able to stand when I stretch my spine other wise I cannot lift my butt off the chair at all. They ran physical tests, one was for arm strength. I showed them depending on my position my strength changes dramatically. I told them about about Dr Rosa and Dr Flanagan and what he found on my upright MRI, extreme cervical lodosis, about CSF and in my case it is not returning from brain back to my body correctly. About CSF leaking into my brain causing NPH, pointing out that I have high ocular pressure but no sign of glaucoma about it hitting one of my ventricles that regulate body temperature, reason for the hot brain... At the end of it all he wants to see only peer reviewed papers.He introduced me to one of his colleagues who seemed genuinely interested in the CSF theory. I gave him Dr Flanagan's web site. But then the 2 doctors look at me and said "how do we fix this CSF problem?". When I said it would be different for everyone as the blockages would be in different places and what is causing it would be different too. Gave the examples of Eagle's Syndrome which they asked "what is that?" And of a friend who had a roof fall on his head, and his ligaments are torn in his neck. But they still did not get it, kept thinking this is a disease and fixing the CSF by way of the brain.
So he gave me a referral to a ENT doctor to have my neck checked out.
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Re: CCSVI and CCVBP

Postby dania » Wed Jul 10, 2013 6:59 am

Dr Flanagan, this morning I made another discovery about my condition. Just to go back to the beginning, at around age 10 I was running downhill, slipped and fell on my coccyx. Landed in the sitting position, on my tailbone. This knocked the air our of my lungs and I was unable to breathe for about 20 seconds. Scared the ... out of me. It was at age 12 that I noticed when doing the high-jump. I was unable to raise my right leg as high as my left. In my twenties I noticed that when I rode my horse I had to have one stirrup shorter than the other and that my left hip was slightly turned in. Uncomfortable. Slightly painful. The chiro notice that my coccyx is out alignment, displaced. My leg has turned in more as time has passed. You can feel my pelvic bone is not straight. Now angled, inwards. I jammed a towel in between my knees, extended my recliner into the lying down position, raised my pelvic bone on the left side by putting a towel underneath it and my ability to feel became normal within a minute plus all my contracted muscles disappeared, my spine decompressed. A few minutes later I was able to lift my legs. I stayed in my recliner for about 15 minutes in this position. When I got back into my W/C my back was straight (looks like I had grown a few inches), my spine was no longer compressed, wider range of motion, increased strength all over... But my hip keeps going returning to that horrible angled position. Do you think that the fall on my coccyx could be the original accident that has caused the extreme cervical lordosis, spinal compression etc, etc, etc? And if so, can I do anything about it? Can I get my coccyx back in place?
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 10, 2013 7:23 am

Dania, You hammered the doctors. In addition to some badly deviated septums in PA now we have some doctors getting massive headaches in Quebec.

To be more specific, you don't have CSF leaks. Leaks can be fixed with chemical and surgical patches. Instead, you have an increase in CSF volume in the brain due to dissociation (blockage) of flow between the cranial vault and spinal canal. An increase in CSF volume in the optic nerve sheath is a sign of NPH. Glaucoma in the eye is the homologue of NPH in the brain. The third ventricle is located inside the left and right thalamus. The hypothalamus is part of the thalamus and controls temperature regulation. The optic chiasma of the optic nerves and the pituitary gland are below the hypothalamus. Faulty cranial hydrodynamics (fluid mechanics) can increase intracranial CSF volume and pressure which is known to affect the optic nerve and pituitary gland.

As far as peer reviewed papers are concerned I have thousands. Most come from radiologists and neurosurgeons. They would have to be willing to read a little and connect some dots but it doesn't take a genius to figure it out. What do they want to see? You can tell them about Dr. Raymond Damadian and Dr. Noam Alperin doing research into upright posture and cranial hydrodynamics. Fixing the problem requires removing the obstrucition to CSF flow. Neurosurgeons uses shunts to correct intracranial blockage. Specific upper cervical, flexion-distraction and other manual and physioltherapies can be employed to correct or manage blockages in the foramen magnum and spinal canal. I have other methods but it would be way over their heads at this time.

Your friend probably damaged the upper cervical ligaments which cause joint instability. The latest MRI studies are showing the damage. The role of damage to the transverse ligament degeneration and upper cervical joint instability in rheumatoid arthritis causing brainstem signs goes back many years. More recently it was associated with EDS. Doctors need to start putting two and two together.

Unless he does US, the ENT is not the best person to investigate your signs and symptoms. Blood flow studies make the most sense and they are cost effective and easy to do.

Don't quit. Keep swinging. You and Blossom are softening up some heavyweights. Their duck and dodge strategy is wearing out.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 10, 2013 7:27 am

Absolutely. A hard land on the tailbone in the formative years could have easily caused pelvic obliquity (misalignement) that got worse with age and additional traumas.
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Re: CCSVI and CCVBP

Postby dania » Wed Jul 10, 2013 9:51 am

My cousin saw my posting about my experience yesterday with the neuros and this is what he said "sometimes when you are a hammer, everything looks like a nail". Now is not that the truth for us with the diagnosis of MS!

Dr Flanagan, you are too funny at times. If you can send me some peer reviewed reports on CSF and and neuro-degenerative diseases and/or symptoms, whatever, anything that can get them to open their eyes that they may be on the wrong path. I will pass it on to my neuro.

Who and what should I see and do about my misaligned coccyx? Can it be put back to where it should be? I really feel this is the cause of my symptoms. One other little piece of info, It has been about 2 years since I have been unable to sit on a toilet seat without my butt falling through the opening. My hip is so turned in and my knees are jammed together. I added pieces in the opening (making it smaller) and duct taped them to be able to sit on the toilet. I have asked the girls who help me every morning if the have ever had another patient with this problem. They all said no.

Oh, I just had a light bulb moment!!!!!!!!!! I have an anal fistula right where my coccyx is since 1994. This is too coincidental. Maybe my tail bone was broken in that fall and a piece of bone has caused the fistula??????????????
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 10, 2013 11:22 am

Dania,
I don't want to be doing the work for your neurologist. If he is interested he can simply google any of the many topics I mentioned to you and have covered repeadtedly on my website and blog, as well as in my book. Some of the topics I discuss were getting old when I read about them over thirty years ago. The connection between NPH and neurodegenerative diseases goes back to Hakim and Adams (not the beer or patriot Sam). Hopefully, the neuro has heard of them. I came across studies that associated PD and NPH early on in my research. The association of CSF volume in the brain in MS is more recent but not that new. If there is a particular topic the doctor needs help finding studies on, I will be happy to help.

You need x-rays of your spine for sure, including the pelvis. I suspect you have developmental anomalies that were made worse by falls. There is a good chance that the fistula is related to the fall on the tailbone, especially if you had underlying congenital issues. The tailbone cannot be set but the strain on the sacrococcygeal ligaments can be decreased and made more tolerable. Likewise, pelvic strains can be reduced and pelvic pain relieved. In addition to musculoskeletal relief, reducing the strain takes pressure off the tail end of the cord and nervous system, as well as the contents of the pelvis. Among other things, the sacral plexus goes to the bowel and bladder. You probably have lost significant amount of buttocks muscle mass. You should try child's training seat.
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Re: CCSVI and CCVBP

Postby dania » Wed Jul 10, 2013 1:56 pm

A big TY Dr Flanagan. I have lost all buttock muscles on my left side. If I lie down, with a solid surface against my pelvis my pelvis I can lift my right and left leg. I maybe wrong but I feel spinal decompression for me will not last. The same as AO adjustments. the chiro says my spine keep compressing again, much more so than a normal person. If my spine decompresses while extended in my recliner, with a towel shoved underneath my left side of my pelvis, what is the telling me? I will get X rays of my complete spine. Do you suggest a MRI? Or anything else?
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Jul 10, 2013 3:02 pm

If you can lift your leg against gravity with no resistance while lying on your back then your rectus femoris of the quadricep frontal thigh muscles and your iliopsoas hip muscles are probably working in the 3/5 range.

Neither AO or spinal decompression will last long due to the atrophy of postural muscles and sitting in a chair. Sitting in a chair or recliner causes compression with or without the pillow under your buttocks. The purpose of the decompression table in your case is to relieve the chronic compression and move fluids. It also exercises the joints and connective tissue of the spine which you can't do yourself. It will keep your spine, brain and cord in much better shape. If it were up to me I would just get the x-rays of the spine and pelvis to start with so that you get an overall impression of what it looks like and see if futher investigation with MRI is warrented.
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Re: CCSVI and CCVBP

Postby NZer1 » Wed Jul 10, 2013 3:23 pm

Hi all,
my Uncle with MS has had a chair designed to suit his bodies needs. I don't know if that was with a specialist involved or not and I will ask. He has been used as a guinea pig for years, probably because of his intellect and connections in the technology world. Ex Aircraft Engineer and Freemason.
We have a couple of PwMS in our local group who have also had their chairs custom made and one lady who sadly just passed away had a permanently reclined chair of about 45 degrees to make it liveable for her decades in a chair.
I make a huge assumption that there 'might' be benefit in design of the chair and it's adjustments that would help people. The chair manufacturers down here and in Australia have been very innovative with manual and electric chairs. We have a very do it yourself, gaffer tape, ethos down here!

:)
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Re: CCSVI and CCVBP

Postby dania » Thu Jul 11, 2013 8:43 am

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Re: CCSVI and CCVBP

Postby dania » Thu Jul 11, 2013 9:16 am

OH boy, this is me.

What is the SacroCoccygeal syndrome?

Pronounced “Say-crow-cock-sig-el”, the syndrome typically results after the coccyx loses its natural flexibility which can negatively affect the spinal cord and its many nerves. The syndrome causes excessive tension of the lower back and pelvic floor muscles reducing one’s ability to bend or stride freely. It can also impair flexion of the hips or thighs affecting many activities at work and at home. It feels a bit like having a board glued to your back or buttocks. The syndrome also causes a dramatic weakness of the pelvic floor and thigh muscles. Due to the manner in which the spinal cord is anchored to the coccyx the SacroCoccygeal syndrome can affect nerves throughout pelvic organs or extend into the legs and spine to varying degrees.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Jul 11, 2013 9:54 am

The sacrum is the triangular shaped bones that forms the base of the spine between the iliac bones of the pelvis. The coccyx is the tailbone. The tailend of the cord is connected to the coccyx by the filum terminale. Some surgeons cut the filum terminale to release a tethered (short) cord. The sacrum is connected to the ilia and coccyx by ligaments colletively called the sacroiliac ligaments. The sacrum is the foundation for craniosacral therapy. You most likely have sacroiliac and coccygeal ligament and muscle strains. Coccygeal strains, misalignments and fractures are a fairly common occurance following delivery. I have seen many misaligned pubic bones as well. Most mothers recover uneventfully. Many mothers have scoliosis and pelvic problems before they get pregnant and have no problems during pregnancy. I don't think an internal exam or correction is necessary. History, orthopedic examination and palpation of the pelvic ligaments and muscles, along with x-rays is more than sufficient. The strain can be reduced but the alignment cannot be corrected. I used counter-strains and physiotherapy such as US, EMS etc.
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Re: CCSVI and CCVBP

Postby dania » Thu Jul 11, 2013 2:58 pm

What you are saying makes perfect sense. In a perfect world I can do what you recommend. But at this time I cannot get a doctor to see me just to get a requisition for Xrays. A doctor that takes my complaint seriously and does not blame it on MS so far has been impossible. Just today, a person suggested I might be better off in a place where they could take care of me and another said "you should not be living alone." Another asked "what can I do to help you?" My answer was you see a drowning person and you ask them what can you do to help? They do not see that if this problem gets looked at, plus treated I might not need as much help, I might get better? I do not have an advocate who will fight for me.
Sorry for the rant, just fed up of knocking my head against brick walls.
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Re: CCSVI and CCVBP

Postby dania » Thu Jul 11, 2013 6:24 pm

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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Jul 12, 2013 5:08 am

You are right. If you were looked at and treated like a normal person you would do better and could do more for yourself. More importantly, if treatment and rehabilitation of possible congenital malformations and subsquent aquired injuries were done on a timely basis you may have prevented or signifcantly slowed the degenerative process.

Thet tailbone is just one small part of the pelvis, which is complex. I like to treat the whole pelvis. Every bone in the body including the teeth undergo deformation under mechanical strains. That doesn't mean that they are movable joints. For example, walls in buildings similarly shake during earthquakes but that doesn't make them movable joints. It simply means that they deform under vibrational strains. Although it may deform as a unit under stress, the tailbone in humans isn't designed for and doesn't move per se. Its role is to support surrounding structural and internal tissues and organs.

The flexion-distraction table is the best approach for you. Tell your chiropractor about the problems related to light headedness when you turn your head, and the pelvic problems pertaining to differences in hip motion and possible tailbone fracture. This will help him determine which areas to focus on. He may not want them but you could also speak to your chiropractor about getting the x-rays.
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