DrSclafani answers some questions

[drsclafani]

Dr. Scalfani

So can MSers who have low thyroid function chime in here? When did your thyroid problems surface?

Several of my family members are on meds for hypothyroid including my daughter who also had part of her thyroid removed. At my sister's urging I had mine checked, AFTER my MS diagnosis and sure enough, I had it too. I'm now on Synthroid and Cytomel. I probably had it before my 2000 MS diagnosis. I had weakness, fatigue, & depression - all thyroid issues.

it is interesting. when we look at doppler neck studies we always see lots of vessels going through the thyroid

there is so much to learn and understand

[drsclafani]

Dr. S.,

I had asked this question before, so please excuse if you've already answered and I was unable to find in this massive topic:

The Canadian government health research funding agency has called for clinic trial proposals from Canadians. Have you been in touch with any Canadian imaging/vascular/interventional radiology specialists to share your trial planning or to see if they can incorporate your work to date into a Canadian trial?

The call for proposals closes in August; and it sounds as if your experience negotiating with the IRB would be very helpful to those in Canada who are preparing to slog their way through.

Thanks again,
Nick

actually, i have spoken with several canadian physicians. mostly sandy mcdonald

i wonder whether IRs or neurologists will win these grants. Neurologists are much more adept and familiar with writing grant proposals

[drsclafani]

I have not been diagnosed with any thyroid issues. I suspect I have some.

So this might be huge, actually? People who are hypothyroid experience lack of sweating, low body temperature, cognitive fog, fatigue, constipation, intolerance to cold.

So the thyroid is damaged by the collaterals running through and so underperforms its job and some of the symptoms lumped in with MS are actually ccsvi-related thyroid symptoms....

Here is a drawn image of the thyroid. Check out where the thyroid veins connect into the jugular, it's right there at the critical spot where the jugular meets the subclavian veins, ccsvi is often found at that juncture according to DrS:

http://www.clivir.com/pictures/thyroid/thyroid12.jpg

I was wondering since for hypothyroidism also saw possible symptom of weight gain, and that could not be the case for many people with MS I know that are certainly not overweight.

However, there is also the contrary to hypothyroidism, the hyperthyroidism, and indeed also some overlap to certain typical MS symptoms:
Major clinical signs include weight loss (often accompanied by an increased appetite), anxiety, intolerance to heat, hair loss, muscle aches, weakness, fatigue, hyperactivity, irritability, hypoglycemia, apathy, polyuria, polydipsia, delirium, tremor, pretibial myxedema, and sweating.

But should we all go in delirium and check out our thyroid function now? I want at least to check if my past blood tests included such a check, but it's probably more specific.

zeurika is correct. this is conjecture and needs to be understood more fully.
lots of research, needing lots of money

[drsclafani]

Thyroid function in multiple sclerosis
W. R. Kiessling*, K. W. Pflughaupt*, I. Haubitz ** H. G. Mertens*
1 *Neurologische Universitätsklinik, Würzburg, FRG 2 *Rechenzentrum der Universität, Würzburg, FRG
Acta Neurologica Scandinavica
Volume 62 Issue 4, Pages 255 - 258
Published Online: 29 Jan 2009

"Thyroid function was studied in 112 MS patients and 175 controls on the basis of T3, T4, T.B.G. and T.S.H. radioimmunoassays. In 33 MS patients the T.R.H. stimulation test was employed additionally. The MS patients had significantly increased T4 levels whereas T3 and T.S.H. were found to be significantly lower. No differences were found in the T.R.H.-stimulated T.S.H. response. The changes in thyroid function parameters were similar in different courses of MS and did not correlate with the degree of clinical disability. The results suggest that in MS the T4/T3 conversion might be reduced as seen in acute or chronic diseases."

Obviously our brain/spine damage is the worst of our issues, but if changing the blood flow through liberation immediately restores better functioning to the thyroid gland, that could contribute to some of the immediate improvements that are difficult to explain.

we have just touched the surface

[drsclafani]

Doctor;

Considering that each day is lost (assuming the relation CCSVI <=> MS) it is just common sense to have the catheter veno / and / fix now... If further progress are made; further analysis and technical will be deployed / developed / invented and this procedure is not (that is subjective opinion) risky. therefore we could be "updated" after this first intervention?

Thank you for your time,



(Sorry being such a pain)

ALGIS
my turn to ask a question. is there any interest in treatment by doctors in taiwan?

[drsclafani]

Dr S, I only just started reading your Forum after listening to your Presentation in Italy. I've been reading daily topics on TiMS and have learned a lot about the disease and especially CCSVI from this site, but I've never had a question to ask. Having just gone through pretty much all of this Forum in the last couple of days, I suppose my only question would be - Are you the only Doctor on here ?? -- because some of the info and detail talked about here makes me glad I didn't have a dumb question to ask !!!!!!!
Anyway I still don't really have a question but only a thought that I'd like to share with you. I am involved in M.S. purely as an "in-law", my Wife is the MS'er: now if she wanted to get laser surgery on her eyes, or if she wanted a face-lift, if she wanted larger breasts or butt cheeks, or if she wanted to get rid of some belly fat (NONE OF WHICH SHE NEEDS TO DO I.M.H.O. !!!), she could do it. If however she wants to get badly collapsed / blocked / tangled veins in her neck fixed, well too bad, she can't because of some inane requirement that it be a proven and tested procedure. So for vanity, go ahead, for the sake of your quality of life, tough luck !!!!!
From reading this Forum, you have many, many people who need your assistance, my Wife being one of them, you appear a dedicated gentleman who wants to help the MS Community but are being denied the opportunity to do so by the "establishment" who have come up with some ludicrous excuses to put down your application for approval to do this work.
Might I suggest that you tell the "establishment" to go screw themselves, and set up your own "shop" to do this work - call it Sclafani Plumbing or (to be serious) The Sclafani Institute; I'm not even suggesting you want wealth, but have you ever thought how much you could bring in through something like this - say only half of one percent of North American MS sufferers came through your Clinic in a year, and lets say you (being charitable) charged $5.000 for imaging and treatment, you would be doing sales of nearly $12 MILLION. That would allow you to expand to treat more people bringing in more dollars to allow additional centers to be opened.
I know it has been suggested and I believe you even hinted that it was a possibility, but please REALLY CONSIDER IT, for the sake of all the Dr Sclafani Fan Club, for all the MS Sufferers in North America and from my perspective, most importantly for my Wife . Thanks Doctor.

I will, as always, be honest. The idea of the economics of this has entered my mind. If i could earn some money to really create research while making my life comfortable is quite attractive. However to treat patients, without being able to do research would be short sighted. I feel compelled to assure that whatever I do benefits mankind, not only you, your wife or me. An opportunity to do this much good comes around very infrequently, to throw that opportunity away without making a loud statement, would leave me disappointed. That being said, being on the sideline makes me feel quite disappointed already.

Lots to think about before deciding.

[drsclafani]

google scholar results for Sclafani, Salvatore J. A.

http://scholar.google.com/scholar?hl=en ... =&as_vis=0

Imagine if the IRB would let him churn out papers for us the way he does for the splenically injured, neck penetrated, pelvically gunshot...the list goes on and on.

Edited to add: this article, by a S J Sclafani among others, suggests that venous stenosis can occur either at typical locations of anatomic narrowing or at sites of previous trauma. So trauma can bring on a venous stenosis, at least according to drsclafani circa 1988? http://radiology.rsna.org/content/168/2/371.abstract But this sort of stenosis is not what you are seeing in CCSVI cases, not even for one of the couple malformations found in each patient? By trauma, could this mean car accident or are we talking gunshot wounds? Apologies if this is too forward....

you are forward thinking cece

there are many forms of trauma that can injure veins

1. iatrogenic trauma, caused by treatments, such as catheters in veins that lead to injections that cause strictures
2. actual violent trauma, stab or gunshot wounds
3. blunt trauma, car accidents, etc
4 radiation scarring.
5 chemotherapy scarring

to name a few

[drsclafani]

posted by 'estrelinha' (sp) June 16 in the tracking sticky thread...

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: June 14, 2010 Paris
Type of venographic study: (MRV, Doppler) both

Diagnosis: Nothing wrong with jugular veins, just a little difference between right and left flows (not pathological). The azygos vein has not been investigated because, according to the physician, the azygos can not suffer from stenosis if the jugulars are normal.


?????

'
people see what they are prepared to see.

how many procedures has this doctor seen

catheter venography is warranted in my humble opinion

[drsclafani]

It seems as though the US and Canadian MS Societies funding for CCSVI studies is aimed at putting a nail in the CCSVI coffin, once and for all.
We are climbing Mount Everest!

And the question for Dr. S, is: With this kind of opposition, is it really possible to make any progress?

It would be rather naive to expect MSS to support CCSVI going by their stance throughout ... the sooner we get out of MSS rut, the better the chances of ccsvi ...

I'm not surprised at all. This isn't the first time the NMSS has shown it's true colors. Look at what they could do for LDN, and yet they've done nothing. They first came out against it, with force, and then when TIMS posted to counter the NMSS stance, they changed their tune but have done NOTHING to further LDN research or to make it an established treatment for MS. Even though it does work so much better for so many, with NO risks and NO needles at very low costs. So here is something else nonPharma up to help MSers and they do the same dance.

This is why we need heavy hitters like Dr Sclafani & Dr Dake (here in the US) to stay on track to counter the NMSS MonSter machine. This is going to be a fight, sadly, so whatever we can do Dr. S to help you get back on track with research, please let us do it! For your next submission to IRB, can there be any possible way to bring in some MSers that have been liberated to speak or write towards gaining approval. What fails to come up, it seems, is that this is such a relatively simple procedure to make such a big difference! They talk of IRB making sure the risk is worth the reward, well there are many of us that can speak first hand to how the reward is sooooo great! That has to count for something...

the letters of MSers were attached to my proposal in the first place.

[drsclafani]

Dr. S, could you elaborate or perhaps list some of the non-MS related possible complications of untreated venous blockages? And are these complications things that are documented in the literature (and therefore accepted by all IRs) or rather more complications that you personally have seen from you experience--in which case perhaps there will be differences of opinion between doctors on the issue.

Thanks in advance, and can't wait to see the dr S/Wheelchair Kamikaze collaborative work!

The most significant complication of non-MS blockages of the IJV is loss of access for venous drainage for dialysis. Such patients are really in trouble. Occlusions of these veins, and the femorals, and other veins, prevents these patients with kidney failure from using simple veins to get hemodialysis, necessary for their survival.

This week I treated several patients who had "used up" all their veins for dialysis access. they literally have roads going no where and unless we can get something into a vein big enough for the flow necessary for dialysis, they will die

Another real problem is superior vena caval syndrome usually caused by tumors that compress the veins draining the head, face and neck. They can develop a head resumbling a tomato, beefy read, swollen tongue, puffy face. They are confused, sometime poorly responsive. Horrible. The treatments include radiation and stenting of the obstructed veins

Another; Budd Chiari syndrome in which the veins exiting the liver are obstructed. This leads to liver failure, and varicose veins that can cause intesting hemorrhage


you are not alone

[Cece]

the letters of MSers were attached to my proposal in the first place.

Should've added our pictures?

[Algis]

ALGIS
my turn to ask a question. is there any interest in treatment by doctors in taiwan?

Doctor;

Sure there are, and I have been tested already once (Doppler/MRV). But even they admitted that they did not follow any special protocol.

At another major hospital; 1 person has been tested/treated (2 jugs) mid-June. I am currently proceeding at that other hospital and will have a "Doppler alla Zamboni" Monday July 5. And a proper MRV July 12.
It is a team of neuros/vascular professors that research the field since a while.

I can give privately more details and names if needed.

Thank you.

Algis

[drsclafani]

Any comment on the class action suit against Dr. Hubbard?
http://ccsvi-ms.ning.com/profiles/blogs ... tle-begins

And... congrats on the 200,000; we love you Dr. S!!
AH

just what i need, more hassles

all i am trying to do, as david is doing, is make people feel better

[drsclafani]

I'm crushed about Dr. Sclafani being shot down. My friends know I was counting on that. So one asked me, "Why not go to a private clinic for this procedure?" Aside from telling her that I didn't feel that they were as well equipped to handle all the variables, I didn't know what to say." She thinks I should go for it.

Pros or cons, anyone?

laura
you will have to weigh the pros and cons of your own condition. If it is deteriorating, you might want to rush, although no guarantees, of course

if it is mild and your are functional, it would make sense to wait. There are many new doctors coming on the scene. they are in their learning curve.l

[drsclafani]

ALGIS
my turn to ask a question. is there any interest in treatment by doctors in taiwan?

Doctor;

Sure there are, and I have been tested already once (Doppler/MRV). But even they admitted that they did not follow any special protocol.

At another major hospital; 1 person has been tested/treated (2 jugs) mid-June. I am currently proceeding at that other hospital and will have a "Doppler alla Zamboni" Monday July 5. And a proper MRV July 12.
It is a team of neuros/vascular professors that research the field since a while.

I can give privately more details and names if needed.

Thank you.

Algis

THATS GREAT
i look forward to your liberation