This Is MS Multiple Sclerosis Community: Knowledge & Support

A well-deserved fantastic buzz !!

HappyPoet, that is beautiful, you outdid yourself! My congrats on the milestone as well....

*bump*

Nihao, welcome back, how was your trip? You have missed exciting things....
* Dr. Hubbard found & treated CCSVI in a Parkinson's patient! What does it mean, we do not know.
* The SIRS find-a-doctor website has added 'Endovascular treatment/CCSVI in MS' to its searchable list of areas of expertise.
*

They haven't treated him yet.

i was really pushing the envelope before i went to the adirondacks and exhaustion was closer to the fact. The time in China was really relaxing. standing on my head does that to me.

i apologize if i did not review your cds. it is very difficult to review them and to put the real person and their CDs with the THISISMS usernames. Very difficult to keep it all straight.

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Yes, balloons are designed to have a nominal pressure of full inflation and a burst pressure. many physicians, including myself, use a pressure gauge to check the pressure and assure we do not go much beyond the burst pressure


infrequently



as long as the pressure is contained within the balloon things are pretty safe.when the balloon bursts, the pressure is longer contained and can cause a jet of fluid at high pressure. This is usually not a serious problem in a vein but can cause tear of the tissue. Also if a balloon ruptures it may become LESS attached to the rest of the catheter and there is a risk of some of the balloon coming off the catheter. this is a more serious problem in arteries than in veins.

however even when the pressure is contained within the balloon, the expansion may exceed the ability of the tissue to stretch. in such circumstances it is possible to have a (usually) small tear of the scar tissue. this rarely is a source of serious bleeding, although it might lead to clot at the tear that leads to blockage of the vein


avoid exceeding burst pressures
using cutting balloons
use only high quality reliable balloon catheters

on the more serious side, i was told that there are many patients in china with MS, although the rate per 100,000 is much lower than in canada, western europe and the northern US. Of course, since there are a billion more people in china than in the US, that does add up to a lot of patients.

but my IR colleagues were quite unfamiliar with MS....not that dissimilar to the experience in the US only one year ago

you remind me of me two weeks ago

Dr S.

I have been giving myself a neck massage in the mornings (my MS symptoms are generally worse on waking, I guess this ties in with the jugulars kicking in when supine). I do it for about 10-15mins and use just downward strokes. The first time I did this I have powerful sensations in my lower legs and feet and afterward my walking was more fluid and could 'feel' the carpet with my toes (a sensation I hadn't realised I'd lost).

Is there any risk with doing this? (I do take aspirin as a precaution).

If there was a stenosis in my jugulars could this help correct things? (I realise if there are valve issues it probably wouldn't correct that).

When/how do the jugular veins kick in? Does my whole body have to be supine or are they working if I just tip my head back 90degrees while standing?

Would it be better to do the massage in a standing or supine position?

Good to have you back.
Thanks

Jonathan

Hi Dr. Sclafani,
Welcome back I had a question from a little while ago on which I would greatly appreciate your thoughts.

Thanks, NHE

Hi Dr. Sclafani,
I've been looking into nattokinase and I ran across the published research below. Do you think that there might some benefit to using nattokinase in the treatment of CCSVI in MS patients?

Thanks, NHE


Effect of nattokinase on restenosis after percutaneous transluminal angioplasty of the abdominal artery in rabbits
Nan Fang Yi Ke Da Xue Xue Bao. 2008 Aug;28(9):1538-41.

OBJECTIVE: To investigate the effect of nattokinase on intimal hyperplasia in rabbit abdominal artery after balloon injury and explore a novel strategy for the preventing restenosis after percutaneous transluminal angioplasty.

METHODS: Fifty-six New Zealand rabbits were randomly divided into 7 groups, namely the solvent control group, model group, natto extract lavage group, refined nattokinse lavage group, intravenous refined nattokinse injection group, clopidogrel group and clopidogrel-aspirin group. Balloon injury was induced by inserting the catheter through the femoral artery into the thoracic aorta of the rabbits. The platelet counts were notad and platelet aggregation was observed, and the abdominal artery was taken for pathological analysis. The expressions of MMP-2 and -9 in the abdominal artery were detected immunohistochemically.

RESULTS: There was no significant difference in the platelet counts, platelet aggregation rate or MMP-2 and -9 expression between the model group and the nattokinse-treated groups (P>0.05). The stenosis index in each nattokinse-treated group was significantly greater and the neointimal proliferation index smaller than that of the model group (P<0.01 or 0.05).

CONCLUSION: Nattokinse can inhibit restenosis of rabbit abdominal artery after percutaneous transluminal angioplasty, which is independent of its actions on the platelet or MMP-2 and -9 expressions.

Dear Dr. Sclafani,
It's great to have you, Dr. Sclafani, volunteering your time. Thank you also for being willing to help us with MS get liberated.

I'd like to get the procedure myself. I have a faulty valve on top of everything!

What stents are used in our USA? Do they have a name?

Again, thanks for everything.
Regards,
Synthia

Can you tell me how common it is to get scar tissue around or near the incision site? When there, what can be done about it? When is this serious? Can this create issues for the blood flow, especially since that's what trying to be corrected?

Thanks! Welcome back! Hope it was a good trip!

Welcome Dr. have to say I was a bit worried you seemed to be gone for some time, thought someone may have hijacked you and put you in a sweat shop treating PwMS 24/7.
One of my group have just had tests done by the Auckland Radiology Group at Auckland Hospital NZ. We supplied the videos and protocols from Zamboni and Haacke for the ultrasound and MRV. They said they would do the testing no problems.
I quote my friends initial comments afterwards "They read and are now familiar with Zamboni's work. They are very open to learning all they can - but I was their first patient.
He said that they didn't have a doppler probe - which is why they wanted to do the MRV. But didn't think the contrast agent was useful because everything looked so good."
"So, I wonder why there wasn't even a slight stenosis?"
" Yes - that was always a risk - them not knowing what they were doing. But at least there isn't some very obvious problem with them. And I have all the images and can maybe send them to someone to have a look at.
Thanks everyone for thinking about me today! "
There are now several PwMS who have had treatment in NZ that we know of, 2 in NZ and 1 in Australia (Prof T). One person Arne (Muse) has had good improvement since the treatment and the other two have had little benefit. All of these examples are from IR's who are not that well versed in treatment and the testing was substandard IMO.
The example above of the testing where the experience and equipment is below average, naturally it me. It seems that these people seem to think that they know best even though they know nothing.
We have one PwMS going back for a discussion today with the IR and she has the many web links to the Symposium, Zamboni protocols and Simkas works, etc to give to the IR so he can give an 'educated guess' after looking through the evidence provided by a PwMS about the work required!!!!!!!! Then talk again with a opinion.
In NZ we are way behind the eight ball, although Radiologists make all the right noises before starting they BS us at completion like a Neuro would.
Could you please have a look at the CD's and help with an opinion. Please PM me. Do you have any tips on how to deal with this situation?
The last lady is 8 months ago dx and had a severe first relapse, and naturally I and others are trying to help because of the risk of further damage. The others in our group are long temp PwMS SPMSer's and myself a PPMS so we are still wanting help but realise we will likely have to have repeated treatment, which is too expensive as private patients.
My Facebook page is CCSVI in NZ.
Thanks Dr. regards Nigel

Me again or still as the case may be.
I have recently been following the work of Dr. Flanagan aka the uprightdoctor. Dr.s can you please have a look at his web pages he is well versed in CCSVI and the works of Dr. Shelling and has some very valueable input that would help IR's and anyone for that matter who is involved with MS.
I see that Cheerleader (Joan Beal) has made contact and Costumenational has a very good dialogue with Dr. Flanagan about his situation and CCSVI.
http://uprightdoctor.wordpress.com/about-ccsvi/
There is more on the Dr.'s web site that needs looking at also, please have a read!
http://uprightdoctor.wordpress.com/ccsv ... odynamics/
Regards Nigel