This Is MS Multiple Sclerosis Community: Knowledge & Support

Wow... who are you people? If I were a doctor, I would not reply to any of your questions. You guys are brutal! Are you a doctor that you can challenge and slam other doctors opions? Do you challlenge your own doctor in his office? Face to face? I though these forums are for information sharing not the challenging of doctors that are trying help. Do your own research and make your own decisions. If you have questions, ask them, If you don't like the answer, try a different question.

Can I just interject quickly....
not to be disrespectful (I find it truly unique that doctors feel comfortable posting on this forum, and don't want to take advantage of that), but maybe to provide another perspective from the research and discussions I've had with doctors during the past three years. I know patients on this forum rely on published, peer-reviewed research. Dr. Schelling is concerned about the lack of valves and venous back jets due to valsalva manuever or thoracic pressure changes. We've discussed this at length.


link

Please read Dr. Chung's extensive research on transient global amnesia and valsalva manuever in those with internal jugular valve insufficiency. Venous reflux and incompetent valves are related to ischemic events and white matter lesions in the elderly.

We need working jugular vein valves. Unless you plan on never turning your head upside down, or sneezing, or straining on the john, or lifting something, or getting stressed, or having sex, or doing the myriad of everyday activities that causes blood to go back up the jugular veins and into the brain. The IJVVs are the only thing between the heart and the brain protecting from venous backflow...and we are JUST beginning to learn about their importance.

http://www.ncbi.nlm.nih.gov/pubmed/20800950

http://www.biomedsearch.com/nih/Pathoge ... 72657.html
(This was a concern for me, because my husband Jeff is a professional trumpet player, and utilizes valsalva. His IJV valves are fine, however, and Dr. Dake felt his continued playing would not be an issue for venous reflux.)
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Someone said better malformed valves better than none.
I have none and experiencing the symptoms of which
Cheerleader speaks.
I would advise very careful research.
I have no recourse, or intercourse, for that matter.
Dr Dake has proved to be open and knowledgable.
Collaborative research is responsible research.
I fear Dr Arata is treading in unsafe territory
He should have kept his IVUS.
Paul Amos

"Venous outflow of the brain after bilateral complete jugular ligation," Ensari S, Kaptanoğlu E, Tun K, Gün T, Beşkonakli E, Celikkanat S, Dere H, Cekirge S.

http://www.ncbi.nlm.nih.gov/pubmed/18382980

They need follow-up studies on ligation after thirty years. Age thirty is the average time for MS to appear. This is assuming CCSVI present at birth (congenital malformation).

there are other papers that point out the opposite, neurological sequellae such as confusion, obtundation, lethargy.

sorry but i totally disagree, my wife has just had the procedure with Dr Arata, and believe me compared to Dr Simka and Prof Grozdinski, there is no comparison, and yes we have had all 3. Dr Arata always answered all our emails to him and we talk to him on Facebook where he answers a multitude of questions, don't think you even know him so to slag him off is uncalled for. We have first hand experience with the whole crew at Pacific International, very very professional and so much better than Poland and Bulgaria and Dr Hewett on his own time went to Regina where he met with all kinds of people and Doctors/Neurologists.... Keep in mind Dr Arata is very busy doing many procedures a week, but he still manages to answer our questions and he and Dr Hewett are on the end of the phone

I only exchanged emails with Dr. Arata this time last year and he was very curteous. I've spent half an hour with Dr. Hewett in person and have spoken to him on the phone numerous times. He has been extremely generous with his time as well as both kind and helpful. His many appearences have been documented on Youtube. He is due to visit north-western Alberta along with Dr. Bill Code sometime soon.

I've not been treated by anyone at Synergy/PI. I just wanted to share my experiences to date.

I specifically referred to the safety/efficacy of ripping valves apart/off, not conventional venoplasty.

But since you mentioned the Hubbard fMRI study, do you mean the one where patients were asked to perform the same exercises before and after venoplasty, and surprise, surprise, their scores improved? Of course, correlation does not immediately mean "cause and effect" since of course simple repetition can cause better scores.

I performed a laterality test and my first score was much lower than my second one which was 100%. I didn't have venoplasty in between, but repetition and a second chance improved my score dramatically.

No, my socks were not knocked off by the fMRI changes in task results, not when there's another possible explanation.

Blood flow is what we are trying to improve. Measuring blood flow is not an easy task. None of the tools we have are well validated. And its complex (http://en.wikipedia.org/wiki/Fluid_dynamics and http://en.wikipedia.org/wiki/Blood_flow).

That is why we use narrowing or stenosis. IVUS is one of the best tools for quantifying stenosis.

"Eyeballing" flow on a venogram is subjective.

With CCSVI, we really know very little but there are many opinions. There is very little published peer reviewed data that has been reproduced. So, I know that in most instances I do not know.

This is a good link to better understand evidence based medicine

http://en.wikipedia.org/wiki/Evidence-based_medicine

I can't wait until we start to turn the corner on this and there is that peer reviewed, published & reproduced data.

The CCSVI procedure is not conventional venoplasty; in many to most cases, it is valvuloplasty. What you are referring to I believe could be called annuloplasty or tearing of the annulus. Some have said this is not a safe practice because it increases the risk of scarring or damage to the veins.

As I understand the study, the end measurement was not if scores improved. They looked at what areas of the brain lit up while attempting the task. The task-oriented areas of the brain that lit up were the same pre- and post-venoplasty; in pwMS, this was at 30 - 70% in comparison to task-oriented areas of the brain that lit up in the healthy controls. What changed was that, pre-venoplasty, non-task oriented areas of the brain were lit up in pwMS and not in regular controls. Post-venoplasty, non-task-oriented areas of the brain did not light up in pwMS.

I am interpreting this as an improvement in our ability to focus our brains on a task but I do not know if this is the right interpretation. Exciting research, to be sure. I hope they conduct further tests and, yes, they could test the healthy controls a second time to make sure there isn't a change in their non-task-oriented areas as well (although what change that would be, I don't know, since they already aren't lit up....on second thought, it would be to test MS patients twice without having a venoplasty in between tests, to see if there were any improvements in the lighting up of non-task-oriented areas from the learning effect. )

I was a patient of Pacific Interventional and agree with those saying to do your research before choosing them.

welcome spuni - your opinions are certainly welcome here . Too bad it didn't work out better for you. Did you understand the limitations of the procedure before agreeing to undertake it ?

Any sense of " hurry up " I'm getting from those treated ...... seems to me .... to be caused by the great demand for CCSVI treatment.

Is the sense of being "rushed " ..... not due to the CCSVI medical staff ..... wanting to help as many people as possible ?

Where ? May I ask can you get treated for free ?

That's great news . [ either that or Bob has a new Internet name ]



Mr.Success