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Thank you, Marie. Makes more sense than anything I could think of. I'll check out that link.

she always complains that she's cold, heat radiates off her like a furnace.

Same thing here, Bob. I feel like ice, but apparently I'm not cold to the touch.
And Rokkit, ditto on the stress. Although I hadn't noticed that reaction with scary movies.
I guess it's good to know what sets me off, but I could really do without any of it!

I am so sorry but I cannot help commenting on all this going on about phisiological questions.
The scientific community has been studying MS for many years and has produced many different theories, none of which has reached the status of proven knowledge regarding the etiology of the condition. Zamboni is the first one who has offered a logical explanation.
My suggestion would be to channel our effort into spreading the news instead of trying to improvise ourselves as MS scientists.
Questions should be directed at why neurologists keep ignoring Zamboni's and Dake's experience and not at whether the heat in the brain is not dissipated by a faulty venous drainage. I hope my opinion is not considerated patronising because it is not intended to be.
GiCi

Hi Gici, I am so very grateful that you’ve become a part of TIMS and are willing to share your experiences. We are all hungry for information and having your first-hand accounts is extremely beneficial and enlightening for everyone here. I always look forward to your posts. They are very much appreciated, especially given your background. Please continue to share your opinions; everyone is important.
The reason I have so many questions is exactly because the scientific community has been studying MS for many years and has produced many different theories, none of which answer any of my questions. When I tell my neuro my low back has ached constantly since my first episode, but there was never any problem with it before, he says there’s no connection with MS. When I say I’m oversensitive to cold, but not heat, he just shrugs. But now we have Dr. Zamboni’s research. I guess I’m just trying to ask how some of these somewhat common issues might be related to the CCSVI model. Nothing scientific about it on my end, just kind of picking the brains here at TIMS for anyone to speculate on while we wait for the next piece of news to sink our teeth into.
As for spreading the news, I’m wearing out the ‘Send” button on my e-mail, contacting as many doctors as I can. I’ve also given the papers to all my doctors, my dentist, my eye doctor, nurses and any one else I can think of who might have an interest.
Gici, you ask the million dollar question – WHY are neurologists still ignoring Dr. Zamboni’s and others research? If we could get a response to that question, we’d be so much further along the path. My neuro said he had never heard of it. That was the end of the story for him. He wasn’t interested in reading the research. I’m guessing that’s a common and not entirely unreasonable reaction for some doctors; not enough research yet. Personally, I don’t think that’s a good enough reason not to read what is available, but some/many doctors are not going to make the effort. But that leads us right back to your excellent point about getting the word out, to generate more interest, get more trials done, more data accumulated, more papers published. I’ve participated in one trial and would eagerly participate in any others that are available. I have donated to Stanford’s dedicated CCSVI fund and will gladly do the same for Jacobs or any other institutions that have a fund. I wish I knew what else I could do. If you have any other ideas, please let us know. Until I think of anything else, in my spare time I guess I’m just hanging out asking questions of anyone who wants to respond. And being thankful that people here care enough to do so, including you.

Zamboni is the first one who has offered a logical explanation.

I agree completely.

My hope was to keep the other threads "clean" by having this place for those pesky questions people have.

I agree we should be looking at ways to contact and discuss why the neurological community is not more interested. Do you have any new ideas here?

One thing I wonder Gici is in regards to other medical communities. You are in an country with a universal medical coverage. I always assumed our country's medical system with it's strong commercial incentive was WHY things were the way they were, for example , if you are a neurologist you go to big seminars put on by pharma companies that invite speakers to discuss "new research" but the research discussed is chosen by the pharma. It is easy to see why papers like Barnett and Prineas or Haacke are not discussed at these seminars: they have nothing whatsoever to do with the drugs used and available.

Therefore the neuro leaves this seminar feeling very up to date on new research and very much in step with his medical community, when in reality the full scope of available research was not discussed, only that material that supports the current paradigm, and as a result there is a skewed point of view regarding the overall picture presented in the research. It comes off as if there is no question that MS *IS* autoimmune and the lesions tell you the disease course (prevent lesions=prevent SPMS)

I even imagine that a neuro may feel his time was wasted at such a seminar should they discuss "theroetical" issues like why is disability related to iron but NOT lesions. The neuro can't USE that information in his practice so it is useless waste of time maybe to him.

SO I have thought maybe in other countries this would not be like this at all? My guess was that the research would be more openly discussed, but maybe it is not discussed there either and most people get their information from pharmaceutical representatives there too? Let's be honest if I was selling barbed wire I'd not discuss the value of wood fences...it is not reasonable to expect that.

Yet you too have some difficulty getting this accepted in your country> What issues are at play there and do you think my guess about the research influences is on target at all or way off?

Marie and Others, I have two more random question/thoughts to ask (the one you started this thread with was astonishingly similar to one I asked you via pm... ):

1) Folks are reporting about pressure gradients being reduced by the liberation procedures in Italy and Stanford by something like 3-5 mmHg. It this significant, i.e. is it normal to have no measurable gradient across these sections? Or is there some gradient just because of gravity compressing the blood lower down and closer to the next valve more? Or the opposite way, simply because veins widen down stream?

2) Everybody's talking about intense-terrible headaches post procedure. Do we have some sort of consensus what's causing this? CSF volume readjusting (more CSF needed as there's less pressure in the veins, i.e. similar pain to post lumbar puncture)?

Marie,

I think this thread is a great freakin' idea. I have a question that you may or may not be able to answer and it's a bit embarassing, but hey, we all have MS and we all know sexuality is a part of it, so here you go and everyone forgive me for baring my ass.

I do not have ED; a little but it's just a little slower and that is probably age as much as anything. My question, having been prefaced by that, is this: The equipment works, but there's no 'finish' for me if you know what I'm saying. Don't get me wrong, I'm grateful I can still do it, but I haven't had the big O in a few years and it's starting to piss me off!

Why in the hell would it work functionally, but not finish? I would have thought the two were inexorably tied. I have looked and looked for answers to this and found nothing. There's probably nothing I can actively 'do' to make that happen, but I'm am more curious about that than any other of my symptoms, maybe because I have some level of understanding about what's going on with the rest of it.

Pressure:

Think of a hose and imagine that you had water flowing through the hose...then you stepped on it pinching it in one spot. If you take a reading of the pressure on the side where the water is trying to get through it will be higher than if you take a reading below the location where your foot is pinching the hose.

The readings taken in the veins are on either side of the stenosis confirming exss pressure behind the stenosis. After the stent the excess pressure is gone.

Neck pain:
mine is absolutely caused by accessory nerve damage. This is a well described phenomenon in radical neck dissection as well. The nerve gets hurt and then the large strong trapezius does not function correctly, leaving very tiny small muscles to do the work. These tighten spasm and refer pain up to your eye, along the nose and the head.

Initially there is some fluid changes too so that may be speculatively the cause of the terrible initial headache. Remember brain parenchyma+blood+csf= the total volume of the skull. You skull does not change size so if the blood is reduced (because it is not backed up) the CSF will need to change to make up the difference, the fluid dynamics in the head will have to be different.

Marie wrote

The nerve gets hurt and then the large strong trapezius does not function correctly, leaving very tiny small muscles to do the work. These tighten spasm and refer pain up to your eye, along the nose and the head.

For example: I had a high rib out of place probably caused by the shoulder muscles spasming. I went to the chiropractor for an adjustment - he moves the rib back to its "rightfull" place. Then he tells me that I might have some head pain for the next twenty four hours -sure 'enuf, I had the pain along the side of my nose. I am quite fortunate though - my chiro has talked with Dake a couple of times -- he is in-tune to what Dake is doing.

Thanks Marie for the pressure explanation. I do believe though that everyone has a pressure gradient - normal healthy individuals also. For us, the ones with the blockage, the pressure gradient is higher. It is much less once the blockage is gone.

Sharon

Sharon, thanks for clarifying my question. Marie, it was clear to me that a stenosis increases the pressure, but not whether there is no pressure to begin with.

sorry I did not get it Rad.

The central venous pressure is normally between 2 and 8 cm H2O.

I am asking what pressure gradient we would expect in a healthy vein compared to the gradient across a stenosis. If you define the gradient as pressure up minus pressure low, I would expect the former to be slightly negative in a healthy vein because gravity compresses the blood toward the next valve. It would be positive accross a blockage. Is that true?

Putting it more concretely, I'm wondering what are the gradients in units cm H2O that have been measured in healthy and blocked cases?

It's really a simple question anybody who measured them in patients could answer right away.

Hi radeck,
Re: your #2 Question about the Post Op headaches.
I can only tell my short story.
No stents or anatomical problems were identified or treated on my Left side. I had NO Left side soreness, no headache or anything.
Right side had 2 stents, with one pretty high up, above the tip of my external ear about an inch, so that when Dr. Forrester pointed to where it was inside my skull, that is exactly where I have the worst pain.
So, I attribute the level of discomfort I have to the amount of work/trauma done in that area to place a stent.
No discomfort at all in my right chest for the azygos ( or whatever it is called) stent,
My neck is sore, as is my jaw, ear, eye and top of head. All areas where the surgical wires were 'run thru' to place the stent.
I am sure it is all bruised and taumatized in some way.
So I think my tenderness is all from procedure, but what do I know?
just fyi. thanks, Rose

In my case the pressure above the stenosis was much higher than below, since there is no valve there or anything else, no, there is not supposed to be a gradient there in a normal person. As I mentioned the normal central venous pressure is somewhere between 2 and 8. After the surgery the pressure above the stenosis dropped several points and the collateral veins disappeared, meaning there was not enough pressure to keep them open any more. This indicates a physiological level of normal pressure after stent placement in me. I THINK it was about 5 afterwards. Remember people vary and are different in terms of arterial blood pressure too; from low pressure folks like me typically 100/65 to high pressure folks with readings of 145/94 and everything in between and above and below! Venous readings are likely to be a little varied too. It seems a mistake to me to get too hung up on numbers other than relative numbers in an individual.

maybe if I understood why you think it is important I would answer it better I am perhaps too dull I guess to understand the question/concern here maybe. It would not be the first time

The main point is there is enough pressure behind the stenosis to reflux and create collateral circulation and after the stent these are gone. Dr Dake told me the readings and numbers themselves are not actually meaningful, what matters is that the collaterals disappeared--they wouldn't be there if the pressure was not significant to the body and they wouldn't go if you didn't relieve it with the stent.

Lew I have no expertise at all in that area and do not know the answer to that..

Hey Lew...
Did some googling for you, buddy. It's called anejaculation and can be a problem for men with spinal cord injuries or nerve damage in MS. Let's hope for healing. You deserve it.
link

I think we need to rename this thread "Ask Marie" or "Dear Marie"
It's a terrific idea...so glad we have our med cred girl in the house!
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