CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby blossom » Tue Oct 18, 2011 1:20 pm

dr. flanagan, congratulations!! i am happy that these top dogs are recognizing you and your work. although i look at it two ways-they are fortunate also that your work will help them also to promote their work and the main thing is-that it will all come together to help people that have been or would be suffering needlessly because this part of illnesses has been way too long overlooked. or as i call it poo-pooed.

you know my story well and i get the feeling that there are some that don't care for my persistance when it comes to all this. but i've been through the mill for yrs. and my skin has thickened-so the bottom line is that the truth will prevail and i have prayed for that day. it has been a long time in coming.

i totally understand that i could have permanent damage but i am thinking positive. one thing that helps with hope is that still after all these yrs. when i position my head right i can still get movement even when there is no movement otherwise.

i did have a call back today from florida. they did get my mri with flexion like i sent you. the guy i talked to said that "if i get this right"that there was extreme narrowing at the c5/6 "and said that "the veins were being squashed"-also until i got there and they do their own tests there may be more disc involved. he said they could remove the spurs. this would be done by a neurosurgeon. a small cut-no cutting of muscle etc. so less invasive and scarring. this is the place where this dr. says he created the lazer surgery. 25 yrs. experience. i will be talking to them again. i mentioned you, your book and the recent study done with the upright mri. "they want me to send the study and info. about you." which is good as although they are the surgeons but i want your input to be there and nothing that has a chance of being helped missed. "you are my mentor"and i feel all these places can benefit from your dedicated study of the spine etc. "i also hope to benefit"

i hope to be in contact with the one in wayne, pa. near phila. soon. will see what they say. they have other locations i think one in new york too. i know so far that the surgeon in phila. has 4 yrs. experience. but the lazer inst. itself has been around longer. the dr. that was on tv and a clip of how the surgery is done is now in research. so far they are the ones that do work with medicare. this is a big help but will not be the decideing factor.

i have a lot of searching to do. there is one that claims lazer surgery is not as safe as the way he does it-he consults in manhattan but only does it in beverly hills. oh boy.

i've done searching on the internet and would think more would be listed under lazer spine surgery. do you have suggestions?
is there a difference in endoscopic and lazer? or is it called lazer endoscopic surgery? see i need guidance-i just cant screw up.

i know i'm lenghty but i just can't help it. maybe hopefully even if one other person picks up on this it would be one more that doesn't loose their life because they fell through the cracks.

thank you again and again for your patience and support.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Oct 18, 2011 2:15 pm

NZer1 wrote:I have had two adjustments on my Atlas using a drop table, all of the other visits have been NSA. In my opinion it is a case of the blind leading the blind. At some level our bodies must be doing the best they can to accommodate the effects of injury and wear and tear, and there must also be a point where the body cannot correct any better than it has. To try getting a structure to 're-align' to a anatomically correct position is going to be a trial and error situation. It may not be achievable.

This is absolutely true. You can't realign spondylosis. Nor has anyone found a magical adjustment to make scoliosis go away and you can't align away stenosis of the spinal canal. That said you can realign the upper cervical spine. That has been shown many times and NUCCA has been able to demostrate significant changes in the curvatures of the spine especially the upper cervical spine.

I believe that Graham has done well with realigning my Atlas, which is really only going to be proveable by xray?
I personally think that muscle testing is a little risky to only go by and in the same breath that xray will not tell all the story.

As I mentioned previously, I do not agree with NSA and it is not specific upper cervical. Muscle testing is major in orthopedics and neurology and can certainly give you solid evidence of effective treatment. For example, if you can walk after venoplasty it is a good sign the treatment was effective. Some chiropractors use esoteric muscle tests I don't agree with. It's also true that you can show correction on x-ray and not have improvement in patient signs and symptoms. The same is true for blood and CSF flow. Some people have permanent damage to the brain and cord and no matter what intervention is used they won't improve.

At this point in time I am going to research having Upright MRI, it looks like I will need to travel to Australia. I am hoping that my GP's latest request for a Neuro assessment will be successful, if not the local MP is our MS Society Patron and has offered help to 'motivate' the Neuro to see me and my objective is for an MRI to see what if any changes since my last MRI about 2 years ago. That will also give me a comparison if I get an Upright MRI done.
The reality is that my 'MS' symptoms have progressed during the whole time (11+ months) since having the first adjustments and there are too many other possibilities for cause for me to only focus on alignment.

I have a close friend who has just traveled to Dr. Sclafani to have PTA after having two PTA's done in NZ that were under inflations, so the jury is still out on what in my mind is the best next step.

Just like chiropractic. There is a great deal of difference in surgical procedures and surgeons.

My sister and her Husband are going to the States next April and have offered to be support for me if I want to go to Sal for PTA treatment. So my mind is over running a little at the moment especially with symptoms progressing and my mobility is at the stage of hindering my ability to walk, a major concern as I have always been so active, and my self image is about being the active, out doors type person. My vision and mental fog is of as much concern although it is easier to pass off as it must be age!

It sounds like you have some options and plenty of time to explore them. Good luck.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Oct 19, 2011 12:46 am

Blossom,

C5/6 is the worst but C4/5 also needs to be considered. The type of surgery you are interested in is called endoscopic surgery. The laser is simply the cutting tool the surgeon uses. Lasers work by burning rather than cutting tissues such as with a scalpel. Laser reduces bleeding but it produces heat which can cause problems. Anyway the cutting tool the surgeon chooses to use isn't as important as the method of getting to the surgical site. Endoscopic surgery is by far better than traditional open surgery and the recovery time is much faster. In the past they opened the spine up from the back side which required cutting muscles and connective tissues and removing bone to get to the disc. In endoscopic surgery the procedure is done through small tubes which don't disturb muscles and other connective tissues. Nowadays they only remove the protruding pieces of discs and bone spurs rather than removing the whole disc which causes far fewer problems. Removing the entire disc tended to cause problems with neighboring segments of the spine. Overall endoscopic surgery is an excellent surgical method.
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Re: CCSVI and CCVBP

Postby Sunnee » Wed Oct 19, 2011 3:50 pm

Uprightdoc,

Could a problem in the neck effect the finer motor skills of your hands, with the neck feeling a bit sore below half way down nearer the shoulder area.

Also could a problem in the neck cause visual problems, say in clarity/definition NOT double vision but a slight blurring of outline.


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Re: CCSVI and CCVBP

Postby Sunnee » Wed Oct 19, 2011 4:14 pm

Uprightdoc,

Sorry got another question

Can a childhood accident or neck trauma worsen in adult life causing further problems with mobility etc

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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Oct 20, 2011 4:07 am

The following is a recent comment on my wordpress blog. The connection between the spine and neurodegenerative diseases such as MS couldn't be more clear. There is a lot to be learned from studying these cases. There is hope on the horizon for better methods of brainstem decompression and improving blood and CSF flow. Upright MRI will shed new light.

Hi, Dr. Flanagan,

I was diagnosed with Arnold Chiari Malformation in 2002 and Multiple Sclerosis in 2003. In 2004, I had decompression surgery, adult VP shunt, laminectomy of C1-C2. This June 2011, because of my Ehlers Danlos condition and a nick by a comb at my hairdresser. My adult VP shunt pierced through my skin. I went in for an emergency revision. This time, a pediatric VP shunt was placed due my Ehlers Danlos. In September this year, my new pedi VP shunt is draining way too much and I’m having to drink 100+ oz a day to keep up with it. It’s either because it’s a pedi or because it’s malfunctioning. But because of my Ehlers Danlos, they’re waiting on changing the valve. I’ve read a lot of information with CCSVI and MS. And so I was very interested to see this subject.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Oct 20, 2011 6:37 am

His Sunnee,
Yes, I suspect that, among other things problems in the upper cervical spine can Parkinson's disease and affect fine motor skills in the hands. Upper cervical misalignment, head tilts and abnormal curvatures of the spine can also cause displacement of the brain in the cranial vault and affect the optic nerve and opthalmic artery to the eye.

Spinal injuries generally get worse with age and they are cummulative; that is, they add up and eventually take their toll. Childhood traumas are often worse because they have longer to fester and get worse over time. On the other hand, seniors are less able to withstand trauma.
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Re: CCSVI and CCVBP

Postby HappyPoet » Thu Oct 20, 2011 7:32 am

Hi DrF,

Quick question: Is a head tilt different from an upper cervical misalignment? Thank you!
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Oct 20, 2011 8:50 am

Hi Poet,
All upper cervial misalignments are associated with certain amount of degrees of misalignment in the x, y and z planes, which would imply a tilt. On the other hand there are much more exaggerated tilts and misalignments of the head associated with spondylosis (degeneration) and kyphoscoliosis (abnormal curvatures) of the spine.
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Re: CCSVI and CCVBP

Postby blossom » Thu Oct 20, 2011 9:45 pm

hi dr. flanagan, it is clearer to me what to look for in the line of treatment i need thanks to you and your patience with me.

i'm sending my cd of the latest mri to a few places mon. then i wait and see. yes, there are good ones closer. if i don't have to i am not mentioning ms just like i did before. after i'm contacted back and if they feel they will treat me then i'll tell.--the area i'm in is not receptive to ccsvi or new ideas. it seems very tight with old school ms. i'm afraid if they hear ms i'll get the same old bull i've got for yrs. "can't be your spine-you have ms"will be told to me.

the one place i'm sending this to the doc is an orthepedic doc but trained for endroscopic and has done several thousand the info. reads. what do you think- he's not a neurosurgeon.

also, now that you won't be on the same thread you know we know where you are. i'm sure some new ones will find you but i feel very sad that there will be some that won't.

if your thread ccsvi-ccvbp isn't directly connected to and needed on the ccsvi site then i don't know what is. i know myself and others found you there and i will always be grateful for that.
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Re: CCSVI and CCVBP

Postby Sunnee » Fri Oct 21, 2011 1:46 am

Blossom

Forgive my previous ramblings, didnt read your posts thoroughly, so now deleted. bit tired and sore
earlier not running on all engines so to speak.


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Last edited by Sunnee on Fri Oct 21, 2011 7:44 am, edited 1 time in total.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Oct 21, 2011 2:23 am

Hi Blossom,
That's terrific that you have a better understanding of what you are looking for in surgery and surgeons. An orthopedic surgeon would be fine for your type of case. On top of that, orthopedic surgeons are experts at endoscopic surgery as they have been doing arthroscopic surgery, which is endoscopic surgery, on the knees and shoulders for many years now.

As you know it is my opinion that spondylosis, scoliosis and stenosis of the spine can cause of host of problems such as Chiari malformations, tethering of the cord, chronic venous back pressure, venous hypertension, ischemia (decreased arterial flow) of the cord and signs and symptoms similar to multiple sclerosis. I am with you however, I wouldn't lock horns with the surgeon over the issue at first. Your main concern right now is to get your neck fixed. In this regard removing the bad cartilage and bones spurs will definitely improve blood and CSF flow through the spinal canal and it will take pressure off of the cord, which would be much better for the health of the cord.

It is my fault that the thread was moved here. I am not at all familiar with the layout of this site. NHE asked me what I thought about moving it here and I thought it would be helpful so I said okay as long as I can move it back if it doesn't work. After several complaints and requests I have asked NHE to move it back. So far I have not recieved a reply.
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Re: CCSVI and CCVBP

Postby blossom » Fri Oct 21, 2011 7:05 pm

dr. flanagan,

here i go again. is microdiscectomy the same as endroscopic? or is it better. i kinda take it as maybe a little better??
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Oct 22, 2011 1:32 am

Blossom,
Microdisectomy is likewise done as an endoscopic (arthroscopic) surgery. Surgeons used to have to go in from the back. They would first detach muscles and connective tissues to get to the spine. Then they would remove the posterior arch (laminectomy) of the segment of the spine to get to the disc. Then they would take out the entire disc (discectomy). Closing up the spine they would often use bone grafts to fuse the weakened segments to the neighboring segments thinking it would improve stability. Over time, however, it caused problems with neighboring segments. In endoscopic microdiscectomy surgery they go in with small fiberoptic scopes and surgical equipment through a small incision. They then cut, burn (laser), scrape and suction out just the protrudinng portion of the bad disc and the osteophytes (bone spurs) on the vertebra simply trimming it back to the edges of the bone. They leave the rest of the disc in place. No muscles or connective tissues are disconnected or otherwise disturbed so no reattachment sutures are necessary. The vertebral segment is likewise undisturbed. Therefore the recovery from surgery is much faster and the procedure does not negatively affect neighboring segments. Is called microdiscectomy because it is microscopic surgery and they only remove small portions of the disc that protrudes into the canal. It is a much better procedure and you don't need general anesthesis which is a big plus.
Last edited by uprightdoc on Sat Oct 22, 2011 5:47 am, edited 1 time in total.
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Re: CCSVI and CCVBP

Postby Sunnee » Sat Oct 22, 2011 2:26 am

Uprightdoc,

How is the spinal cord connected does it hang down freely connected at the top and bottom, or is it intertwined with the spine. may be a stupid question but one i dont know the answer to.

Sunnee


P.S. sometimes we have to be brave put our hands up and ask that question, no matter how stupid we may think it is.
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