This Is MS Multiple Sclerosis Community: Knowledge & Support

Personally I'm tired of this game. I suppose that's the goal. I'm also tired of terminologists. I think Dr. Zamboni went out of his way to avoid the term "stenosis" and at some point was carefully using the word "narrowing". If you have narrowing of one jugular, to me it is a sign, a clue, of CCSVI. The criteria include percentage, and minimums, if you need to go that far. Also, Dr. Sclafani has said the azygous is tricky. I guess he changed the camera angle to see the "narrowing" better. Did he image all your cranial veins? Iliac? Lumbar? Spinal? Were there a lot of corollary veins? Deformed veins?

I think there needs to be a new medical certification so people know who to go to, and who to believe. This is getting entirely out of hand. We have everything from people who'll take money for anything, to people who are happy and hope to say it doesn't exist and an entire spectrum in between. The fact that this condition is so unexplored and so complex allows this wild west mentality. It's a new paradigm and a new discipline. People should only take no for an answer from someone they trust. How can you know? Now you have had an invasive procedure and X-rays and injections of dye, with no dilations, which should have been found necessary by screening, and you are asking Dr. Sclafani on a public Internet forum. What is wrong with this picture?

It's not a bad reflection on doctors of any particular stripe. It reflects badly on medical science in general. I guess money can't buy everything, but it sure can kill a lot.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Adamt, did you read this? It seems Dr. S thinks it is impossinle to look at every vein, especially in 2 hours.

_________________
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.

Hi Dr, another thought,
As I sit here at the bottom of the World I realise that you would feel responsible for the outcome of your application.
My departed mother used to say that often you have to wait for the universe to align before you can progress some things.
I believe this is the case with your application, something else is missing in the picture that will appear and it may not be something that is under your influence. Once 'it' or 'group of its' happens you will be able to proceed magnificently with more ease.
The resistance to CCSVI will collapse if it is unjust.
Enjoy your day.
Nigel
ps my TN is getting less excruciating after having the tooth I broke removed.

It seems to me that this is such a new complicated multidisciplinary area of research, on a 'vulnerable population', that how could you be an expert right out of the gate on how to put together a proposal for this? Even with forty years of experience in your pocket. But you won't blow it in that particular way again...and we'll be here with wine if you do....

I loved your response about how to set up a multicenter randomized trial, I'd nominate you for primary investigator on that in a heartbeat. It's becoming obvious that research done wrong is as much our enemy as research done right is our friend in this.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

i must have heard her incorrectly, but she did say every vein, but maybe she said something after like "every vein in the ......."

Hi dr Sclafani

I have just read, that Buffalo has received IRB approval of their angioplastic trial!

Please - read more here:

http://ccsvi-ms.ning.com/profiles/blogs/breaking-newsbuffalo-launching?xg_source=activity

Could you maybe borrow their application and do a little copy'n'paste ?

Christian

_________________
RRMS Dx'd 2009

Dr. Sclafani
thank you for this thread. I have read the different user experiences on TIMS with valve issues (Erika, LR1234, Rici) and I realise searching for answers on how to treat valve issues is less 'looking for a needle in a haystack' and more 'do I need a needle, and will it be what I'm looking for if I do find it' .

I had a Doppler scan done, it showed a diminished flow in the left Internal Jugular Vein (IJV), with an immobile valve at the IJV-innominate junction. Increased right IJV flow. I have not yet had any CCSVI treatment.

I have 2 questions.
I feel much better when I use Niacin occasionally to achieve a 'flush'. I have read that this lowers blood pressure. I seem to have lower blood pressure normally but I am wondering could this be a possible positive adaptation by my body to reduce blood flow through the faulty IJV valve, therby reducing in turn the volume of refluxed blood into the brain? Also, presuming I ever developed high blood pressure, the potential for problems would surely increase if I have an immobile IJV-valve?

I was pregnant in 2007/2008 and I experienced problems with losing consciousness within 30 minutes of staying sitting down - I would get to the point of fainting. It would only be resolved by standing and walking around. My obstetriican could not find any reason for it but did say 1/1000 pregnant women seemed to get this. I found it an interesting epidemiological statistic given MS's 1/1000 prevalence (although this obviously includes the boys!). Could this passing out while seated, during pregnancy, have been related to an immobile IJV-valve? I ask in order to see if this can strengthen the case for seeing a vein-specialist.

Many thanks in advance for your thoughts.

I am also very interested to hear from any others considering or having undergone CCSVI who have a valve problem in their IJV - I know of Erika, LR1234 & Rici, but maybe there are others out there............

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

salt in the wound....

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dr. Sclafani,

We know about CCSVI as it relates to MS, but are there legitimate reasons to treat CCSVI in and of itself?

I do have MS and I'm on your waiting list (saw you last week) and somewhat distaught by this latest set-back with the IRB. It started me thinking about a non-MS symptom that bothers me. I've always had headaches but several times a year I get these vicious headaches with pain in the back of my neck and head that last for about 3 days. I have no vision problems so I'm not sure they're migraines, and seem to be affected by the weather. I also have swelling of my left leg and foot and an odd discoloration of my left leg that I noticed for the first time a few years ago. And what about heart valves? Could a vein stenosis cause these symptoms as well as MS? and would it be a justification for opening up the stenosed veins?

Do you see where I'm going here? If people treated CCSVI and records were kept of their medical histories, and follow-ups were made, would trends then become apparent? such as what health problems improve with this treatment? how long do they last? etc. Would this become a way to perform enough procedures to examine the evidence, see the trends, write the papers that Dr. Zamboni talked about, etc? Then maybe we could get away from the whole MS Inc. blockade and consequent IRB scrutiny.

Just a thought..and many thanks for your zeal in fighting for us.

Laura

I have had a Doppler which found reflux in the IJVV (a "clue" for CCSVI as identified by Zamboni's original 5 doppler tests). Also I have had 3 MRV's of my head and neck. All three show a symmetrical difference between my left and right, but no "stenosis"; and was even specifically noted by Dr Dake. However, when I asked about this to the Dr who will hopefully be performing the procedure on me, he said that this asymmetry is very common, and spun around and pulled out a book from the wall of library behind him, and opened a page which explicitly said that it was normal for the right side to be larger than the left (or the other way around, can't remember).

Personally (and it is a personal view only) Zamboni's doppler exams when performed correctly are the only "clues" outside a correctly performed venography (apart from the fact that you have been diagnosed with MS ).

you are right that Correctly performed is the key. Equally important is that the imager looks for the right findings.

you talk about a comparison of diameter of right and left jugular veins but that is not a sign of CCSVI by Zamboni criteria. No one said that the right and left veins were equal in size.

Delta CSA measures the diameter of the same jugular vein when lying down and sitting up. Normally the vein is larger lying down. One of the five criteria is that the vein is larger sitting up than when lying down.

I also wonder whether you also had transcranial doppler of the deep cerebral veins.

The TCD is done with the operator putting the probe on the lower part of your temple, not on your neck. This test is part of the ultrasound exam and it is ncessary to fulfill one of the Zamboni Signs.

There are only five findings. So unless TCD and delta CSA are done, your chances of having two of the five signs (consistent with CCSVI) are maredly reduced

From CCSVI Locator:

"Today in Rome, the Italian CCSVI Society met with the Ministry of Health, and it was decided that CCSVI can be diagnosed as a stand alone disease, without being correlated to MS. It was also decided that Dr. Zamboni can go forward with his blinded clinical trials of CCSVI in MS. Although there was no time-line given for testing and treating CCSVI, the ministry has promised to move quickly--"

Wouldn't it be wonderful if this happened in the US??? I won't hold my breath though!!!

nope, sorry
collecting data on a group of patients and writing and publishing it all is doing research on patients and it requires IRB.
But the idea of writing it down, finding out whether adding it all up is the goal of the academic life

From Cheerleader on Facebook:

Today-In Rome--CCSVI becomes a recognized vascular conditionShare
Today at 8:22pm

Today in Rome, the Italian CCSVI Society met with the Ministry of Health, and it was decided that CCSVI can be diagnosed as a stand alone disease, without being correlated to MS. It was also decided that Dr. Zamboni can go forward with his blinded clinical trials of CCSVI in MS. Although there was no time-line given for testing and treating CCSVI, the ministry has promised to move quickly--

here's a google translate of a press release:

The cerebrospinal chronic venous insufficiency, "is recognized as a disease"

The Association CCSVI in multiple sclerosis - Onlus "asks guidelines for diagnosis and therapy. Tobacco: "The State shall take responsibility to implement what the scientific community in the world has crossed"

ROME - The cerebrospinal chronic venous insufficiency (CCSVI) is recognized in Italy as a disease in itself that can be quickly drawn up guidelines to be able to diagnose and treat beyond its correlation with multiple sclerosis. This is called the association "CCSVI in multiple sclerosis - Onlus" the Ministry of Health in a just concluded meeting between representatives of the association and Albert Zangrilli, president of the second section to the Board of Health in the same ministry. "While science makes its way to validate the correlation between MS and CCSVI - Tobacco said - as, we ask that, since the Ccsvi has already been validated by the scientific world as it has been validated his therapy, the state will face load to implement what the scientific community worldwide has already validated and to draw up guidelines with respect to this disease occur until the science correlation.

Found in several trials around the world in people with multiple sclerosis, CCSVI is a disease that affects the cervical and thoracic veins that because dell'inspessimento anomalous venous walls, remove inefficient blood from the central nervous system. The correlation between the two diseases in Italy is a study whose results, explain the association, are expected at the end of next year. "Today's meeting went very well - added Tobacco - The Ministry has taken note of our request." The timing, however, there are still some news. "On this we had no indications, but the ministry made us know that it will mobilize more quickly." (Ga)

You would think with only five criteria and qualification for doing the tests a radiologist could get it right. I saw drastic narrowing of both my jugulars on my Doctor friend's doppler (only standing up- I could not see from where I was lying down, but he said it was the same). I could see it plain as day and he said the flow went down to nearly nothing. Yet a doctor in Montreal said he could fing nothing. I found out later he was not supposed to have me do val salva, but he did. I trust nothing he said except that my flow was like porridge. My point is I think things are out of control. Isn't this where colleges of physicians and surgeons are supposed to earn their salary? Shouldn't there be a ruling? Shouldn't there be some sort of certification, instead of all this do-it-yourself training disguised as clinical trials and paid, untrained attempted diagnosis by people suffering badly from NIH syndrome? I guess I and other patients, while not being the whiners we are accused of being, are unrealistic about how well-co-ordinated the medical profession is, and how objective they are, and how fast things can get done. We expect somebody who may be completely computer-illiterate to be able to find the Truth with a Google search, and wonder why they fail. I am compu-literate because I worked with DOS Version 1.0. We are impatient because we see our lives disappearing. It is really a bad situation. But ones whose lives are about to end can and should be saved.

Like the last writer, I have the bad neck-headaches and the swollen left foot. If it's just plain CVI, can I get treated? Or will doctors avoid me like the plague because of my MS and my big mouth?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience