This Is MS Multiple Sclerosis Knowledge & Support Community

Many thanks to you, Doc!

And here's my question:

I hope to get tested for CCSVI and treated as necessary. I have also been getting adjusted by a chiropractor. (Spine is curved side-to-side and neck angle is off)

If someone had to have a stent placed in their jugular or azygous, would chiropractic manipulation pose a risk or contribute to the possibility of the stent migrating or crimping?

I also stand on a vibration plate for rehab. Might this also increase the risks mentioned?

Once a stent "adheres", how permanent is the "glue"?

Thanks again!!!

drsclafani wrote:

girlgeek33 wrote:Dr. Sclafani,

Reading and researching these past 5 months makes me wonder, for those with MS that do not have stenosis, have had all of the tests by someone knowing all that they should, I wonder if they need to look further in the vascular system? Study these patients more in depth? How important do you think it is to do more to see why these patients do not show the same stenosis?

geekgirl

i think that the diagnosis of ccsvi is difficult. none are expert at this since we are still in the phase of discovery. I would not trust one study. i would not trust anything short of catheter venography with ivus

Having a vein that was not an issue laying down and was narrowed when I was sitting up, I wonder what can be done to understand those veins that are difficult to see with Doppler? Venography is the gold standard for testing but the patient has to be lying down for venography. Seems like a dilemma, no?

AlmostClever wrote:Many thanks to you, Doc!

And here's my question:

I hope to get tested for CCSVI and treated as necessary. I have also been getting adjusted by a chiropractor. (Spine is curved side-to-side and neck angle is off)

If someone had to have a stent placed in their jugular or azygous, would chiropractic manipulation pose a risk or contribute to the possibility of the stent migrating or crimping?

some types of stents are balloon expandable. Many of them are fairly rigid and could crimp or kink if pressed on too hard. Others, are self expandable and not likely to crimp. Often in areas that are unprotected, stents that can crimp are avoided. having never had chropractic manipulation myself and having not been taught about it in medical school, it is foreign to me and I cannot say whether these manipulations could kink a stent.

I also stand on a vibration plate for rehab. Might this also increase the risks mentioned?

not sure, but i would not recommend it to someone who used it for a couple of weeks simply because i do not know whether the effects of vibration might enhance movement. Just to play it safe

Once a stent "adheres", how permanent is the "glue"?

Thanks again!!!

the stent sticks by being incorporated into the wall of the vein. How does it do it? the endothelial cells (the lining cells of a blood vessel) creep over the stent slowly but surely. Once covered by the endothelium, the stent is basically incorporated into the wall of the vein. Safe bet 2-4 weeks.

Thanks for the answers.

If you or a member of your family had the ms, would you recommend the surgery as soon as possible? With stent or no stent?

Another question, do you know if the ccsvi could be the cause of tinnitus? have you heard about patient who had tinnitus and it was related to ms and/or ccsvi?

Thank you

mmcc wrote:I was tested and will be having the Liberation surgery in the near future, but a few months ago I had a CAT scan and had a bad reaction to the dye. They told me to never have it again.

Apparently the dye used for angiograms is iodine also. Does anyone know what is done in cases where people have been told not to have that dye? The meeting with the surgeon has not been held yet, so I am looking for information/experience anyone else has had with this problem.

I doubt that people who react badly to iodine dye are excluded from angiograms, so I assume there is a way around the problem. Anyone know?

This is a very important question and you need to understand and be able to give a very good history to your radiologist if you have had a previous adverse reaction to the dye because this will help your radiologist decide whether dye is contraindicated. If dye is contraindicated, you cannot undergo the liberation procedure

CT contrast medias are iodine containing organic salts. There is a small risk of reaction to this contrast media, also known as xray dye. There are different types of dyes and they have different risks. They are hyperosmolar contrast, low osmolar contrast and iso-osmolar contrast.

These reactions are mild, moderate and severe

mild reactions account for 80% of all reactions so it is important to determine which type of reaction you have hadi Mild reactions include:
itchiness
localized hives,
vomiting or dry heaves
dizziness

moderate reactions are pretty uncommon, and are five percent of all reactions. The symptoms include the following:
persistent vomiting
diffuse hives
headache
facial swellingl
swelling of the vocal cords
mild asthma
palpitations
fast or slow heartbeat
hypertension
abdominal cramps
wheezing
shortness of breath

Serious reactions account for 15% of reactions and include
life-threatening cardiac arrhythmias
hypotension
overt bronchospasm
vocal cord edema
pulmonary edema
seizures
syncope
death

The risk of a serious reaction is quite low, about 4 patients in 10,000 exams for ionic contrast media and 4 in 100,000 patients for nonionic contrast media. I would insist on non-ionic iso-osmolar contrast media for any test.

If someone has a serious reaction during a prior contrast study, then the risk goes up 3-7 times higher. Obviously if one has had a serious reaction, having a repeat study seven time as likely to have that happen again, would be a big reason to not give the contrast again.

There are several strategies for reducing the risk of contrast media. steroids, hydration and several other medications are used.

drsclafani wrote:

frodo wrote:Dear Doctor,

I have been reading the article of Dr. Zamboni in which he describes CCSVI and how to perform the five Doppler test. Nevertheless he does not give too much information about the expected reflux, like the minimum volume and time of the reflux to consider a positive in the test.

Is there any source where this parameters can be consulted?

Dr Zamboni defined pathological reflux as more than 0.88 seconds in his paper
in the journal of neurology neurosurgery psychiatry in 2009. vol 80, pages 392-399.

Yes. I know that data, but out of 5 different test, Zamboni defined the pathological volume (>0.88) in the first test, and the pathological time for the second (>0.5 seconds), but he didn't give the whole specifications for the two first tests.

Is there any other source for these values?

The test 3 is quite clear. He gives a minimum section for the jugular, but again, for tests 4 and 5 (no flow and reverted control) are again at least obscure. No flow means exactly 0.0? reverted control is any negative value with no threshold?

frodo wrote:Is there any other source for these values?

There is a paper by Zamboni and Mangetti et al, which you will find on the main research thread, which details the tests specifically.

Hi Dr Sclafani

Thanks for all the time you give us!

My question is and you may have covered this before - but it is a real anxiety I have about the treatment - Is it possible for the valves to be damaged during the procedure thus making the situation worse as one poster on this site reports. I think his vein was found on initial examination to be wider than normal.

My brother when treated for blood cloths was found to have an abnormal venous system in his abdominal cavity and sticky blood syndrome so Im hopeful that Dr Simka will find something to explain my ms.

Thanks and regards

Maureen

Once a stent "adheres", how permanent is the "glue"?

Thanks again!!!

Dr Sclafani: the stent sticks by being incorporated into the wall of the vein. How does it do it? the endothelial cells (the lining cells of a blood vessel) creep over the stent slowly but surely. Once covered by the endothelium, the stent is basically incorporated into the wall of the vein. Safe bet 2-4 weeks.

Dr Sclafani, would I understand correct from this that the potential "danger" of stent migration to the heart (as happened in this 1 case in Stanford repeatidly mentioned in the media) can be considered over by 4 weeks?

In case of a stent implant, could it be important not to perform any physical activity (i.e. even lighter sports) until the stent is covered by the endothelial cells and fully incorporated?

Hi Dr. I have a 14 year old son recently diagnosed with ADEM. But the Neuro said his MRI might point to MS. He was on high dose steroids for 5 days. His presenting symptoms were balance problems and nystagmus on the left side. Since the steroids he has made a full recovery. We are waiting a month to do a 2nd MRI I was wondering if children have ever been diagnosed with CCSVI and if any have ever had the treatment? I am just doing as much research in case it turns out to be MS.
Thank you for your time....

Flashover81 wrote:I was wondering if children have ever been diagnosed with CCSVI and if any have ever had the treatment? I am just doing as much research in case it turns out to be MS.
Thank you for your time....

I think in the late 80's, Dr. Zamboni scanned the neck veins of children/adolescents for abnormalities. As they went into adulthood, about 90-95% of them were diagnosed with MS.

Hi Dr...i do have a question to ask now...since i have been type 1 diabetic since i was 10yrs. old and it does not run in the family, either does m.s., i was the first one in my family to get these wonderful problems LOL...i wonder if the ccsvi had anything to do with this...kinda like what came first the chicken or the egg LOL

Hey Dr. S what do you think about the early study results out of Kuwait pretty Astonishing A unbelievable remarkable go ahead rub dirty in the eyes of the Nay Sayers

http://www.ccsvikuwait.com/Details.aspx?d=4

Intial Samples

CCSVI: To establish the link to M.S.
Started colour Doppler screening of neck veins
62 M.S. patients ( 32 F, 30 M)
Age group (22-57)
22 controlled group ( 15 F, 7 M)
Age (20- 59)
Dublex studies (Zamboni protocol)
Results: 62 M.S. ( 50pt , 81% positive)
22 controlled (no positive)
MRV Of neck veins
50 M.S. Patients (age, 20 – 54) Done
48 M.S. patients (96% positive)
No control group ( 50 will be enrolled)
Matched for age and sex.
Comparison of results will be made

CCSVI: Link to M.S. (Conclusion)
Our results so far shows strong link between CCSVI and M.S.
CCSVI leads to iron deposition which may trigger the inflammatory reaction leading to M.S. or at least worsen the pathology.
CCSVI may not necessary be the cause, however there is clinical relation to M.S.

CCSVI: The treatment
Pilot study. 50 pt - Started March 2010.
10 (6 F, 4 M) Volunteers with M.S.
Inclusion Criteria:
Proven M.S.
Positive (duplex study and MRV)
Not wheel chair bound or bed redden
Sign informed consent and agree to be part of experimental study.

CCSVI: The treatment 2
Venography of neck veins and Azygos in normal breathing and Valsava maneuver
All narrowing where dilated with balloon
Patients where covered with 3000 I.U. Heparin during procedure.
Discharged next day on Clexaine, Aspirin and Warfarin
Close follow up for INR, Clinical symptoms

CCSVI: The treatment results
All successful Angioplasty with satisfactory post balloon dilatation
No complications
All patients reported improvement ( 1 month) :
Improvement or disappearance of Numbness
Loss of Fatigue and increased energy
Improvement of power (foot drop)
Improvement visual acuity (No blurred vision)
Reduced electrical sensation
Memory improvement

Conclusion of CCSVI and Venous Angioplasty

It a prospective study
Try to stop the progression of MS ( it is not a cure)
Finally will audit our result with respect to
Diagnostic modality
Clinical improvement
Radiological improvement i.e. MRI
Neurological correlation

Hey Dr. S what do you think about the early study results out of Kuwait pretty Astonishing A unbelievable remarkable go ahead rub dirty in the eyes of the Nay Sayers

I reviewed their protocols. it is very well laid out.

confirms the association between ms and ccsvi.....surprise!

liberation is safe surprise!

some clnical improvements great!


they limited their subjects to relatively limited ms, no wheelchair bound patients

A great start....kudos to dr sinan and his colleagues!

I wrote:

Dear Dr. Sinan

I wanted to congratulate you on the initial results you have shown.
I admired your protocols and your planning and look forward to further reports.

i have been performing liberation since December 2009 on clinical indications but recently stopped while my IRB protocol was under analysis and consideration.

I look forward to re-starting my treatments.

If you don't mind, I would like to share experiences with you as we are all relative newcomers to this exciting field.

again, best wishes and hope to meet you soon at meetings.




P Please consider the environment before printing this e-mail
Salvatore J.A. Sclafani, M.D.
Professor and Chairman of Radiology
Professor of Surgery and Emergency Medicine
SUNY Downstate College of Medicine

Dr Sclafani,
I went and got a US Transcranial Doppler the other day and surprise! Negative per the Doc. I wish they would have done a MRV or better yet use your system of testing but they were gun shy. Back here in MN they are very careful. Not even Mayo Clinic seems to want to touch it.

The ? is, if you saw very minimal reflux in the left vertabral vein would it be considered normal in a patient with MS and would it concern you as a DR looking for CCSVI.

What significance does the left vertibral vein play in the grand scheme of things?