DrSclafani answers some questions

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

Ability to walk

Postby Rosegirl » Fri May 14, 2010 1:53 pm

My only symptom is not being able to walk, so I can't imagine how difficult life is for those of you suffering from all the other awful things MS does.

But for those of us who, on our good days, "wall walk", we desperately need to be able to walk normally. I bounce off the walls in my house and I use a scooter when I go out.

But at home, I can't carry a load of laundry (or almost anything else) because I have to hold on with both hands. I can't ever get to visit friends at their homes because there's always a step that means my scooter is useless. Parties and even just visits to the neighbors are beyond my reach. Now, my husband and I never get invited anywhere because everyone knows I can't get into their home.

My husband asked me last night why I never watch the DVDs we get from Netflix. I finally told him that I can't get across the room to the TV to load the DVD player. I can't get across most rooms in my house just to look out the window. I can't get to the door in time to ask the UPS man to put the package inside.

So, certainly, speak your mind about what matters most to you. But don't presume that your opinion applies to others.
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Postby magoo » Fri May 14, 2010 1:59 pm

I wold not presume to speak for others. I was only speaking for myself and my situation:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby pklittle » Fri May 14, 2010 2:28 pm

Algis, the whole body scan is fascinating!!!!

I have been wondering, if there can be malformations in the jugulars and that other vein that starts with an "a" (I know, I would flunk your test Dr S), are there possibly problematic veins in other parts of the body? Why just hone in on the neck area? :?:
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Postby NZer1 » Fri May 14, 2010 4:01 pm

Very good point PK little. I have also wondered as much about the supply of blood and the flow through the brain, and around particular fundamental areas. I guess someone will be like minded and look into this as the dam burst of CCSVI must start more interest and questioning into this realm.
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Re: Quantitative Assessment

Postby drsclafani » Fri May 14, 2010 4:28 pm

Squeakycat wrote:It takes about 45 minutes to complete the NMSS version of the MSQLI.

Another benefit of using this is that it has been specifically designed for the purpose of having a quantitative set of uniform measures for MS clinical trials.

The manual for MSQLI is available here.


Since this is already too long, one more thing that may be useful is to administer the questionnaire twice before Liberation to establish the internal consistency of the questionnaire and then do the same at several post-Liberation intervals such as the beginning and end of the first week post-Liberation, beginning and end of the 6th week, post-Liberation.

We will need healthy controls as well as people with MS who do not receive treatment to also participate at each of the test stages, a lot to ask!


please look to see if there are published results of the test for normal controls already created. That would obviate the need to have normal controls
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Postby bestadmom » Fri May 14, 2010 4:38 pm

Rosegirl, I'm with you on the mobility issues. I've progressed to be in chair full time, but have no cognitive, spasticity, sensory, or fatigue issues.

We are as unique as snowflakes and it is going to be difficult to find one common symptom to measure. Maybe freezing, purple feet?
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Postby ozarkcanoer » Fri May 14, 2010 5:51 pm

bestadmom,

No purple hands or feet for me !!! I hate the number of lesions and the number of relapses as a measure of disease progression. I have 40 lesions and NO relapses but I have a diagnosis of RRMS. But I do have fatigue and cog-fog and headache. And I'm not in a wheelchair. I can walk just fine. We can't find any common symptoms. :( :(

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Postby Johnson » Fri May 14, 2010 6:15 pm

Jason wrote:Dr. Sclafani
Many of us will be travelling with family or a helper that does not have MS, so while we are being Liberated they could be scanned as your control group.
Just a thought.

I think that this was one of the flaws in BNAC (I think it is flawed, anyhow...), in that they did use family members as healthy controls, but just because they had no "MS" symptoms does not make them healthy. I could have been a healthy control, with stenosis, on the Ides of March, 1993, but that very night, my optic neuritis started, and on the morning of the 16th, I was blind in one eye, and couldn't stop from falling over. I had "MS".

I think that family members should be excluded from consideration as healthy controls.
My name is not really Johnson. MSed up since 1993
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Postby Wichita » Fri May 14, 2010 6:55 pm

Dr Sclafani wrote:

please look to see if there are published results of the test for normal controls already created. That would obviate the need to have normal controls


One of the components of the MSQLI is the SF-36 (Short Form). Norms for SF-36 scores are available for different population groups, as described in this article:

[url]
http://www.sf-36.org/tools/sf36.shtml
[/url]

At the bottom of the page you can see examples comparing the general U.S. population scores against adults with asthma.
Choose Liberation.
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Postby drsclafani » Fri May 14, 2010 8:05 pm

tzootsi wrote:Dr. Sclafani,

Since you are trying to collect data, I thought I'd fill you in on my wife's case. She has a mild case of MS, dx'd about 3 years ago. Her most troublesome symptom is a heavy right leg. She also has several other typical ms symptoms - l'hermettes, burning skin, morning spacticity, cold right hand, no real fatigue (other than the kind she gets during prolonged walks). Anyhow, five weeks ago she had the procedure done - ballooning in both jugulars, and it went very well. Interestingly it was performed by someone who you used to work with. Shortly after the procedure, her cold right hand became noticeably warmer. Lately, her l'hermettes has subsided, as has the spasticty. On a few occasions, her heavy leg has felt better, usually in the evening.
Symptoms she'd like to see improve - heavy right leg and walking ability are by far the biggie. Since she does have short bursts of leg improvement, we're hoping it can eventually become better. Any idea why her leg improvements come on in the evening?


i cant answer that one
please give my colleague my best wishes and tell him that he should never have left brooklyn!
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Postby drsclafani » Fri May 14, 2010 8:12 pm

costumenastional wrote:Dear Dr Sclafani,

i dont know if you had the time to check some of my operation captures in my so called blog.
Anyway, i want to clarify that by using your name i only ment that you thought it is possible for a jugular vein flow problem to react with the cervical spinal cord's drainage.
I did it only because somewhere in your thread following a question of mine, you were kind enough to say that cervical spine drains to the jugular veins via a complicated vein system which you described thoroughly. I also remember that you had to look it up to make sure, because i was thinking that crvical spinal cord drains to the azygos at the time.

I really hope i didnt offend you in any way by taking this kind of liberty but if so, please let me know, so i change the picture's caption immediately.

In no way i ment that you agree that MS lesions in the cervical spine are caused by problematic flow in the jugs. It is only a hypothesis for all of us (and a big hope i might add) which will take years to be proven right or wrong.

With all my respect

Spiros.


spiros
there is no need to apologize for anything. My skin is very thick. Hopefully people will accept that we are all learning and that i too can change my mind, equivocate, waffle back and forth. be convinced of some other point of view
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Postby drsclafani » Fri May 14, 2010 8:17 pm

Algis wrote:Doctor: you may recall my inquiry about a total MRV/MRI - The whole package is available in The Netherlands for less than 750€ - Complete body MRV / Complete body MRI / Each principal organ MRI detailed (heart/liver/brain/lungs/kidneys/prostate for males etc...) - You also have to consultancy of vascular specialist, organs specialist, etc...

It isn't that uncommon and would have the advantage of having the whole map....

Sample:

Image

While we are there we could make the whole tour... Laying down all day in a MR coil would change some of us from staying in the wheelchair all day....


thanks algis. It is an interesting idea but not all could get such a price, nor would insurers be sympathetic
what you show is a MRarteriogram by the way, getting this study as a venogram might not look so beautiful though
and the downside would be perhaps less detail of the area of interest in the neck

finally i would be skeptical about this test's ability to adequately visualize the azygous vein

but if anyone does get a total MRv, I would love to view it
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Postby drsclafani » Fri May 14, 2010 8:20 pm

bluesky63 wrote:I agree one thousand percent with Rhonda. (See, there's that clear math.) I have had a severe and disabling course of multiple sclerosis with symptoms in pretty much every functional system, and people always assume that I really want to address the mobility most of all, but so much of that is logistical and belongs in the realm of universal design and advocacy. If the world were designed differently wheelchairs wouldn't matter. But I digress.

No doubt at all -- the issue that has caused the most grief in my daily life is the severe cognitive problems and fatigue. When people I've known for years come up to me and start talking and I don't know who they are . . . when I get lost every day in my own town . . . when I can't follow my own children's delightful conversation . . . when I wake up with food in my mouth and the imprint of the keyboard on my face and it's still just morning . . .

Oh yeah, that plus headaches. PLEASE no more headaches. And if I might be so bold as to add one more big wish without being greedy . . . it would be so, so nice to have my head and face and vision feel halfway normal again. Not dizzy-heavy-spacey-numb-can't-even-feel-myself-when-I-eat-or-breathe-or-bite-or-rub.

I am the single parent of three wonderful children, and I would give anything to be the parent they deserve. If I could read them a story without falling asleep on the first page, help with homework, play games with my eager son who has no memory of me without a wheelchair in our life, just do any normal kid-parent things. Even hugging is planned so I won't get hurt or fall over. That's tough to explain to a loving little boy.

Hmmmm. I just read this over, and it looks to me like my most pressing symptoms are head-related -- the feeling like I might explode if I lean too far forward, being so unbalanced, vision, confusion, various cranial nerve problems, etc. Migraines too. I also have a venous angioma and seizures. Maybe a simple head transplant would do it. :-)


thanks

this is one rotten disease
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Re: Dr Sclafani answers some questions

Postby drsclafani » Fri May 14, 2010 8:23 pm

drbart wrote:
drsclafani wrote:how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow,oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery.


do you see a pattern that would lead you to expectations about abrupt improvements? the easy things to imagine would be type of MS, length of disease, etc.

i'm wondering though about the importance of "little veins", ones that MR can't images at 1.2mm and you can't get at with a catheter.

is there enough of a pattern of brain/spinal lesions that would lead you to expect things more specific than spinal -> azygos?

the correlation between CCSVI and MS seems so high, that it might be the people who don't see dramatic changes are the most interesting cases. they may have just as serious an issue with blockage, but at a finer grain.


interesting food for thought
I guess we need to deal with the macro first and then move into the micro
so much to work on!
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Postby drsclafani » Fri May 14, 2010 8:28 pm

Cece wrote:how about this: are you planning on directly measuring oxygenation levels? Or has Dr. Zamboni done this?

Here is what I'm finding:
Intravascular Jugular Bulb Venous Oxygen Saturation
Another method of measuring cerebral oxygenation, jugular venous oxygen saturation (SjO2) monitoring, has been used since the 1980s. Considerable research has been conducted with the SjO2 monitoring system. Monitoring of SjO2 involves use of a fiber-optic catheter, typically 5.5 french in size, placed retrograde in one of the internal jugular (IJ) veins (Fig. 5). It is tunneled up the IJ vein against blood flow toward the brain. The catheter is placed so the tip of the catheter is level with the mastoid air cells or approximately at the jugular bulb of the IJ vein (Coplin et al., 1998; Feldman & Robertson, 1997). The fiber-optic catheter measures the oxygen saturation of hemoglobin as it exits the cerebral circulation in the IJ vein and provides a continuous reading of venous oxygen saturation.

The SjO2 monitoring approach has been fairly well studied. The normal range of SjO2, confirmed in a study of healthy young men, is 55%-71% (Feldman & Robertson, 1997). Most users establish the normal SjO2 range at 55%-75%. Lower SjO2 is a cause for concern; a value below 55% reflects a state of ischemia in which oxygen delivery is compromised or oxygen consumption exceeds the supply of oxygen delivered to the brain. The low state must be treated promptly to avoid poor outcome (Nemani & Manley, 2004)

http://www.medscape.com/viewarticle/551323_6

Part of the theory is that reflux is causing low oxygenation, but if this can be quantified, I would consider that powerful evidence. I am thinking measurements pre- and post-ballooning.


venous oxygenation represents the residual oxygen after metabolism
this could be because the arterial oxygenation starts low, or the flow state is slow and more oxygen can be extracted, or the brain metabolism is greater and requires more oxygen

There are other techniques to measure cerebral blood flow that might be more valuable. putting probes in jugular veins might be a potential cause of narrowing
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