CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby dania » Thu Apr 10, 2014 11:19 am

Saw the ortho doctor yesterday. Said he will insert a rod in my back if I gain at least 10 lls. I believe my problem originates in the left side of my pelvis, SI joint perhaps. Caused by the fall on my coccyx.
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Apr 10, 2014 12:28 pm

Morning all,
had a thought for Dr F.
I have only had one Lumbar Punch which was also a problem one. After the puncture I lay flat for four hours and rested that evening and following day as instructed.
I developed head aches or pressure pains after a day or two and the GP said to take codine and panadol and rest up. Well I had about 4 weeks of problem head pressure and then two weeks of reduced but still problem head pressure. During this time I repeated went to the GP and even asked for a blood patch because my reading indicated leakage and contact due to lack of CSF as the cause of my pressure pains.

Any wat I eventually came right and the GP and my Neuro have discounted this as being of significance, as they do.

Dr F is there any link between post Lumbar Punch head pain/pressure pain and degenerative diseases?

I tend to jump to conclusions as I look for clues to achieve better health and the CSF importance and flow needs are a red light for my mind.

;)
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Apr 10, 2014 12:31 pm

Dania good to hear you had the appointment. :)

Did the Ortho Dr give any insights or indications why he thinks the operation would make a difference?

By that I mean did he see anything that was 'not normal' or causing dysfunction, that could be 'changed' and therefore that would give him hope if he operated?

You haven't given his feedback in your comment.

:)
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Apr 10, 2014 1:00 pm

Nigel,
I haven't heard of any direct connection between spinal taps and neurodegenerative diseases but they do cause pressure cones which have similar affects to Chiari malformations. Aside from leaks, I suspect your that you may have relatively low spinal pressure with poor return flow to the cranial vault. The volume and pressure in the spinal colum must be adquate to maintain volume in the cisterns in the cranial vault in order to support the brain. Spondylosis, scoliosis and stenosis interfere with the normal flow of CSF between the cranial vault and spinal canal. The outcome can be too much CSF volume in the cranial vault or an insufficient volume. Both conditions have consequences. As a result it probably takes you longer to recover volume.
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Apr 10, 2014 1:43 pm

Thanks Dr F,
so my bulging disc C5/6 and disc degeneration as a package deal impacted by the CSF flow make it more important than ever that I have good pressure and flow?

:)
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Apr 10, 2014 2:20 pm

You're welcome Nigel. A Cine CSF flow study would be helpful in your case. It would show if you have descent of the brainstem sufficient enough to block flow. The descent can be caused by tension due to mialignments or loss of support from insufficient CSF volume. Conversely, in contrast to insufficient volume, it would show if you have too much CSF volume in the cisterns.

Refresh my memory. What is your typical blood pressure and pulse rate?
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Re: CCSVI and CCVBP

Postby NZer1 » Thu Apr 10, 2014 7:03 pm

Hi Dr F
it has now settled to being 120/70 on sitting, rises when standing to various degrees each time I have been tested over time lately, don't have access to those figures at the moment. Up till about 18 months ago my BP would drop below 100 not sure of pulse when standing. So things have changed and I 'assume' the CPn protocol may be why?

My doppler 18 months ago when starting the CPn protocol showed average flows when lying VV's/jugs and decreased LH jug when upright, RH jug normal?

Strange pattern of flow that I would like to have clarified in a few months in Aust at my follow up of the CPn protocol. It is normally a decrease with CCSVI when lying from memory?
I have also considered having MRV to Haacke protocol or similar testing on the Sydney Aust Upright MRI when I have my follow up for CPn.

Not sure what is the best method to clarify why my LH jug flow decreases when upright?

;)
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Apr 11, 2014 1:36 am

dania wrote:Saw the ortho doctor yesterday. Said he will insert a rod in my back if I gain at least 10 lls. I believe my problem originates in the left side of my pelvis, SI joint perhaps. Caused by the fall on my coccyx.


Dania,

Harrington rods are not connected to the pelvis and will have no affect on the cervical spine, sacroiliac joints, pelvic stability, pelvic alignment, compression of the coccyx or alignment of the coccyx. It won't help leg strength associated with upper motor neuron signs, and it won't help the tailbone pain or constipation. If stability is a major concern then it would make far more sense to consider a rigid cervico-thoracic-lumbar-sacral (CTLSO) orthosis.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Apr 11, 2014 2:09 am

On the supply side, low blood pressure and arterial pulse rates can affect active CSF production. On the drainage side, venous insufficiency can decrease the CSF pressure gradient and passive production of CSF in the upright position. I suspect you may have intracranial hypotension that could predispose you to pressure cones similar to a Chiari. Spinal taps cause pressure cones. Doctors sometimes recommend coffee to help recovery by increasing blood flow and CSF production. It doesn't always work and studies question its effectiveness. In addition to venous flow, a Haake MRV would provide excellent detail of the design of your dural sinuses. You may have a variation in dural sinus design that could explain the difference in jugular flows. A right side dominant flow is a fairly common variation. An upright MRI and CINE CSF flow study would be good way to check for a potential pressure cone when upright and for potential choke points to blood and CSF flow in the craniocervical junction.
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Re: CCSVI and CCVBP

Postby dania » Fri Apr 11, 2014 9:45 am

uprightdoc wrote:
dania wrote:Saw the ortho doctor yesterday. Said he will insert a rod in my back if I gain at least 10 lls. I believe my problem originates in the left side of my pelvis, SI joint perhaps. Caused by the fall on my coccyx.


Dania,

Harrington rods are not connected to the pelvis and will have no affect on the cervical spine, sacroiliac joints, pelvic stability, pelvic alignment, compression of the coccyx or alignment of the coccyx. It won't help leg strength associated with upper motor neuron signs, and it won't help the tailbone pain or constipation. If stability is a major concern then it would make far more sense to consider a rigid cervices-thoracic-lumbar-sacral (CTLSO) orthosis.
Thanks Dr F. That is exactly what I suspected. I truly believe if an SI joint surgery was done that is all I would need. When I put something rigid pressing into the back of my left hip,everything straightens out and my strength returns.l I have zero core strength and stability. My legs and hips are fused together. As if I am sitting on a beach ball. My spine is like a piece of soft spaghetti. The more disabled I have become the more aware of what is my actual problem. And what particular problem is related to a specific area of the spine. For example,I now know my hot head/ brain is related to my cervical spine.
Would a rod in my back give me more stability with my posture?
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Apr 11, 2014 11:26 am

Your welcome Dania. A rod would give you somewhat more stability in you spine it but so would a rigid orthosis. Trochanteric and sacroiliac belts are better for stabilizing the pelvis
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Re: CCSVI and CCVBP

Postby dania » Sat Apr 12, 2014 9:00 am

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Re: CCSVI and CCVBP

Postby dania » Mon Apr 14, 2014 11:04 am

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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Apr 15, 2014 3:14 am

I read the story but I didn't watch the videos. I thought the pelvic assessment was poor and I don't like the anatomical descriptions and the term "upslip" to define pelvic strains. Except for dislocations the sacroiliac joint doesn't "upslip." The assessment mostly described posture analysis with some assessment for pain on motion such as forward bending and shear stress. It completely ignored the upper spine and mentioned nothing about palpation of the ligaments or muscles. Upper cervical problems are notorious for causing or contributing pelvic strains. The thoracolumbar spine and iliopsoas muscle can also cause pelvic strains. The assessment also left out muscles tests. EMGs and NCVs are poor substitutes for manual muscle tests and have many false positive and negatives. Muscle strenght should be graded and tone and quality of contraction noted as well as pathology. EMG and NCV have very limited value in pelvic analysis. Lastly, the piraformis is a sacrofemoral muscle not a sacroiliac muscle. The sacroiliac joints don't have muscles.

Dr. Clarerance Gonstead used a very accurate system for describing pelvic strains based on x-ray that was taught when I was in school. It was as specific in analysis as specific upper cervical. No one has come up with anything better since then. The problem is that strains are often more than simple structural misalignments. The involve complex mucles and connective tissues. Dr. Major Dejarnette introduced the concept of three categories of pelvic strain. Applied Kinesiology added to Dejarnette's work and included standard and provocative muscle tests. Piraformis syndromes are a part of basic AK analysis that has been taught for decades. In addition to piraformis syndromes there are other lower pelvic strains as well, such as excess Q-angles. I expanded on Gonstead, Dejarnette, Goodheart and Walther's work. I break the pelvis down into upper, middle and lower strains. A piraformis syndrome is a lower pelvic strain.

The pelvis is complex and most doctors aren't very good at analyzing it.
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Re: CCSVI and CCVBP

Postby blossom » Sun Apr 20, 2014 3:52 pm

hi there dr.flannagan, I haven't been here much, but following along. I always hope there
might be a few "curious neurosurgeons" that somehow got wind of all this and are lurking to somehow prove that all this spinal talk and it's connection to this named ms and other dreaded money making so called diseases is hooey--but to their own dismay common sence kicks in and they get that uhuh moment that no longer can be ignored.--a girl can still dream.

i'm not counting my chickens again before they hatch but I got a glimmer of hope. it'll take some doing.

I know my spine is a train wreck from yrs. of walking wrong etc. and wheelchair abuse. if it does work out that I get rid of the cervical spurs and stenosis, after ample time for healing, then get the rest worked on or before surgery. there again, other than you, it's a tough call as who to get.

how are you getting it out there to the chiro.'s to come to your new place to learn- -or do I have the wrong idea on that?
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