This Is MS Multiple Sclerosis Knowledge & Support Community

do you think that reflux in the vertebrobasilar arterial system (and possible associated slowing of blood flow into the brain) can exacerbate MS symptoms? If so, what options would you consider to fix the reflux in the vertebrobasilar arterial system?

If i understand your question, you are speaking about reflux in the vertebrobasilar ARTERIAL system.
Reversal of blood flow in the VB system is usually referred to as Vertebrobasilar insufficiency and is often part of the subclavian steal syndrome.

This is a very different entity. For a variety of complicated reasons, there is INFLOW obstruction to the arm arteries. The body gets blood to that limb by reversing the flow in the vertebral artery as a bypass of blockage. GO back to the highway analogy. The cars will find a way around the traffic jam.

When blood flow reverses in the vertebral artery, it is possible to STEAL blood from the brain (NOt good). In a patient with already reduced cerebral blood flow, this is not helpful.

Does that help. And when do you want to take your medical school exam

What would your reaction be if you performed a venogram on an MS patient and the only problem you found was that one of the internal jugular veins had a 40-50% narrowing at one point, there was a moderate patchwork of small collaterals near the narrowing, plus a large collateral above the narrowing that connected to the nearest external jugular vein, but the internal jugular vein was still dynamic in the area of the narrowing (e.g., the vein expanded when dye was released nearby)? Would you consider a balloon angioplasty in that case? Would you consider any other options?
AND

Those collaterals are telling us something. I would dilate a 40-50% narrowing. I did so this past week. When the balloon was inflated there was an obvious stenosis

as i said before, lesser percentages of narrowing in veins may be significant because they are low flow systems

Do you think that an open chest biopsy for a mediastinal tumor followed by radiotherapy to the area could result in scarring and venous narrowing leading to CCSVI and then MS? Have you seen venous stenosis in the setting of radiotherapy in your practice ? If you have, was it amenable to angioplasty alone or did it tend to be more resistant/fragile?

Thanks,

North

I was wondering if you might give a GENERAL impression of what you might do with this - my stenoses, of course, with the understanding that things might look different in a venogram

if i recall, not johnson, aka, johnson, you were speaking about a situation in which your veins showed some narrowing, but the vein dilated with flow and the ultrasound was asserted to be normal. Is that correct?

well, in a general sense, i come at this with the presumption that you all have abnormal veins until proven otherwise. Usually, the narrowing is very low in the jugular vein at its confluens with the subclavian vein. This area is not visible on most ultrasound exams.

I work really hard to exclude and find narrowings, using ultrasound, multiple views of the venogram, valsalva, deep breathing, pressure measurements and even inflation of the balloon to look for resistence to symmetrical inflation. If none of it turned up a finding that convinced me, i would stop. But i expect that to be infrequent.

Whew...i need a break. This is Doctor Whiplash, I am out to lunch.

matchoo wrote:Most Excellent Dr Sclafani! I am on the list to see u but just when is not known. I may like to wait till next year so I can use my medical spending account to the hilt. I have insurance but that seems to be more a blockade then a drive thru visit. I have MedCost. Who knows how they will cover this if at all. Doing quite well with LDN, ALA iv and a host of other remedies. I also do the inclined bed but am doing so good initially I cant tell how good its working. I tell u 22 doses of Tysabri cant compare to LDN for me. I felt its effect in 2 weeks for sure. I can drink as much coffee as I want to no effect on my MS. I love coffee. Now to the questions. Cumadin scares me and I ask why must it be cumadin. How about what Simka uses in Poland which needs no doctor intervention and can be self administered, I hear it is safer but what do I know? I also question everything here since this country is an Oligarchy of big pharma. My next question is other than donating blood is there another avenue of iron chelation? Oh and one more, if covered by insurance by 50%, is the total price still 10K no matter what? What about repeat need for ballooning if recollapse of vein happens ? is that included? I think I know the answer but hey we have a great board here and lets throw it out there. I take MK-7 or k2 as MK-7 derived from natto for cardiac and artery health, fish oils too! Are both of those blood thinners? There is a warning on back of MK-7 to not take if on anticoagulant drugs such as warfarin or other medications.
Thanks for all the answers and participation. Your saving me a trip to Poland. I look forward to the train ride there from NC. Should be fun. Hope my dribble in understandable.

choo!

What is this list for Dr Sclafani? How would I get on the list? Thanks.

anamishguy wrote:What is this list for Dr Sclafani? How would I get on the list? Thanks.

His email can be found on page 2 of this thread.

Dear Dr Sclafani,

Thank you very much for taking the time to answer our questions. I enjoy the sense of humour as well.

I wish you all the very best.

If you would like to see some images of Dr. Sclafani's handiwork on my
veins, and a description of what was found and how it was treated, visit my blog at http://www.enjoyingtheride.com.

If you would like to ask Dr Sclafani questions or clarifications about my images or procedure, you are welcome to do so. I am giving permission to allow Dr. Sclafani to answer them freely here at TIMS.

For me, it was an incredible experience, but only time will tell if it slows down or stops the progression of my disease.

Dear Dr Sclafani,

Please if you could be so kind to have a look at this? I posted it a few days back, I understand you are real busy and appreciate your effort. A number of people here have found to have exactly the same and we would love to hear your opinion.

eve wrote:Dear Dr Sclafani,

Thank you for all your effort here, I've read this thread with much interest.

I have come across an interesting phenonema whilst holding my breath. I posted it here under this thread : http://www.thisisms.com/ftopict-10832.html

In short I found that my right jugular would swell up immediately when holding my breath. My healthy relatives did not have this. So I posted it on the Dutch CCSVI forum and a number of people reported back they had the same, but not their friends/family.

Now I posted it here too and I've made a short youtube clip to show what exactly happens. Some members here have found they have this too.

Can you please have a look at my clip (only 30seconds) and share your thoughts - and is it indeed my right internal jugular? It would be much appreciated.

In short I found that my right jugular would swell up immediately when holding my breath. My healthy relatives did not have this. So I posted it on the Dutch CCSVI forum and a number of people reported back they had the same, but not their friends/family.

Now I posted it here too and I've made a short youtube clip to show what exactly happens. Some members here have found they have this too.

Can you please have a look at my clip (only 30seconds) and share your thoughts - and is it indeed my right internal jugular? It would be much appreciated.

it looked to me like you did have a distending vein. It looks like it is NOT the internal jugular vein but some smaller veins like the external jugular vein.

It also looked like you were doing the Valsalva maneuver (not a karate move). This increases chest pressure and it is not uncommon for many people who do not have MS to have distsension of the vein.

That being said, it can indeed be a sign of collateral veins. But it can also be seen in heart failure, obstructive lung disease and many other conditions.

But why focus on this. I would look at it like this;

If you have MS, you have CCSVI until proven otherwise

Thank you so much for your answer. I was already convinced of the link between CCSVI and MS but I had some time to kill while waiting to get treatment.

I thought it was curious so I thought I better ask. Time will tell because eventually we will all get scans. Thank you very much for your time, effort and opninion! Much appreciated!

I have one question in mind, and its about cold hands / feets. I have noticed that many patients say after liberation procedure that "now my hands feel warmer", etc. What is the scientific explanation for this? How stenosis or flow problems in jugs or azygos relate to cold hands or feets?

My wife has usually cold hands and sometimes they suddenly go warm and quite red. Im wondering why?

- Ernst

Good Day Doctor, I am 48 years old woman and reside in Nevada. I grew up in Warminster PA . I have had Migraines and headaches since I was 8 years old. But around the age of 28 they changed. No one could ever tell me what was causing them. In 1994 I started seeing my primary doctor who tried every allergy/migraine combo he could find. Nothing helped. I seen 4 different Neurologist in town, all saying they did not feel it was MS. But could not tell me what was wrong either. (Only that my MRI had multiple lesions) In August 2007 I traveled to UCLA medical center to see one of their top Neurologist. I left his office in tears after He did not offer any reason for my migrianes, but did tell me he was 100% sure I did not have MS He also thought I needed to be taken off ALL my medication to see what the cause may be. I read his report to my primary doctor, this man was down right rude. Basically called me a drug addict. SO I know he did not even listen to me. In August 2008, my primary doctor asked another Neurologist in town to please see me, he agreed under one condition, forget what ALL the other doctors have told me, we start from scratch. We did all the same test, with one exception, he ran a T 3 MRI not the traditional. When I returned to his office, alone, figuring I was going to hear the same old thing. I don't know what is wrong with you". He started circling the white lesions on my films and I said I know I have seen then. He said that's not normal, that is MS. Followed by I am 100% sure it is MS. Now I am on web sights all day learning about my MS. The last several months I have been fixated on CCSVI, Dr. Zamboni BNCA or anywhere I can get myself in to get help. The pain is in too many areas of my body. The back of my head and neck hurt so bad I can't even lay my head on my pillow. My legs have started to hurt and I even went temporally blind in my left eye for a short time. I have always been a happy person. My nic name is giggles. I still hold true to that nic name, even under these circumstances. I just want someone to help me. I believe in CCSVI and prayer each day that I find someone to run the test and if I have, do the angioplasty on me. Do you offer help doctor? If so, can you please contact me.... I would feel honored, blessed and so very thankful.

Sincerely,
Sherry Pitman
giggs61@aol.com

drsclafani wrote:i do not know what dissipating veins are. i suspect that your second translation, draining veins, is more accurate.

Sorry, bad Google translation. Your answer helped though and also your answer about your 30 years of experience to the guy that is desperately trying to ignore the fact that he is Johnson...

One more skeptic silenced.

Thank you very very much. Again.

Inge

I just want someone to help me. I believe in CCSVI and prayer each day that I find someone to run the test and if I have, do the angioplasty on me. Do you offer help doctor? If so, can you please contact me.... I would feel honored, blessed and so very thankful.

We have discussed on this forum that it is inappropriate for me to give personal detailed advice on this site. If you are interested, you can email ccsviliberation@gmail.com. Email to Holly Barr and she will begin our process to see you.

It is stories like yours that have touched my heart and compelled me to be involved in ccsvi