Buffalo Newsletter

[Vonna]

Hi Cece,
I have been wishing for a new hat lately, but not a compression hat! :}

Since we have a hard skull up there, yes, we are all hard heads, compression hats wouldn't serve much purpose except for being stylish.

However, applying heat does help! Heat thins the blood, not in the entire body, but just to the specific area. I get headaches in the back and top of my head, and have neck and back aches.

I am just coming out of my fifth exacerbation, and it is the most mild of all. I believe it is because of my knowledge of CCSVI, and the choices that I have made because of this knowledge.

When my neck and back would hurt, and the headaches started, I applied heat to those areas. We're talking MAJOR headaches, like emergency room headaches that meds would not touch. The pain would subside within minutes!

You see, we made our own heat pads by filling cloth with rice, and heating it in the microwave.

Well, I have been asking my kids to make me a "heat hat".

Seriously.

[Chuck123]

Hi TIMS,
While we are all estatic with the news from Dr Zivadinov at BNAC, PLEASE note that BNAC is also looking for more funding to continue their research. If you can afford to, PLEASE give something, ---we are giving again. The donation information is located at the bottom of newsletter.
Best money we have ever spent.
Help the dream come true!!
Chuck 123

[CureIous]

Like everyone else, I am very excited about this wonderful news.

I also wondered what the new treatment might be.

Surely it won't be a medication designed to open up the veins. One that we must take the rest of our lives, with high cost and side effects. Surely.

I don't expect this, but I did wonder what other treatment there might be.

A better, and more hopeful guess it that they will be using some other material to hold the vein open.

Something just occured to me, without sham surgery, double blind would be impossible, that and the fact that everyone is awake for these various invasive procedures, i.e. in my mind that rules out stenting variations, and angioplasty variations, but how to correct physical defects with meds? Thinners were tried long ago with marginal success if any, talk about a brainteaser! What are we missing here?

Mark

[thisisalex]

Thinners were tried long ago with marginal success if any
Mark

thats true Mark... A hungarian neurologist tried to replicate Putnam (in 1950!) , and used blood thinners (dicumarin) in a study. he wasnt succesful...

here is the abstract:

Z. Böszörményi (Neuropsychiatric-university-clinic, Budapest, 1950): New therapeutic trials of disseminated sclerosis. From among 36 patients suffering from disseminated sclerosis after dicumarin-treatment the condition of 10 patiens has shown moderate improvement, in 7 cases the improvement was doubtful, 14 remained unchanged and 5 showed marked deterioration. The validity of these results is made uncertain by the short duration of treatment (3–12 weeks) the drugs having been given in too small doses in some cases, while in others dicumarin was given together with other therapy. In one of the deteriorated cases, which nearly ended lethally, the danger of administering dicumarin in the presence of pontobulbar foci was shown. 10–10 patients have been given myanesin resp. relaxil, with an only temporary effect on the neurological picture and with an also transitory euphoria, but the findings seem to prove that the main point of effect is localised to the cerebrum. Parpanit has been given to 5 patients for 2–6 months, with but a little diminution of spasticity, and in 2 cases of the intentional tremor; of greatest value was the euphorizing effect of the drug which might have been due to the presence of subclinical frontomesencephalic foci. While dicumarin cannot be recommended as a therapy for disseminated sclerosis the other 2 drugs may be applied owing to their possible symptomatic ameliorating effects.

Maybe another thinner with another patomechanism... ?

alex

[fogdweller]

I wonder what the different treatment is????? Any guesses?

Boy, that is a good question. I am a patent lawyer who has been involved in the stent industry for 20 years, so my first thought is some kind of new stent-like device. Since veinous walls are different than arthery walls, and the cardiac stents and neuro stents are all designed for arteries, a newlly designed stent would be in order. Something with very strong attachment at each end to prevent migration but relatively flilmsy in between so as not to induce slughing of the stent. But if it is flimsy, how would that hold the stenosis open?

Also some type of vascular surgery ala stripping the veins for periferal vericouse veins. But it would have to be attractive relative to the minimally invasive stents and angioplasty.

Drug treatment to open the stenosis is a thought, but how in the world could that result in permanent alleviation of the stenosis?

I don't think the ethical problem with sham surgery is a problem. You would just compare it with other treatments, such as angioplasty and stents. Those in turn, I guarantee, are going to be compared to non-treatment so we would have a legitimate three-way comparison.


Is a puzzlement.

[Cece]

Some interesting thoughts on stents there...perhaps this is why it's listed as a future trial, because they've got to come up with the newly designed venous stents first?

[fogdweller]

I was in line for diagnosis and treatment at Stanford when someone apparently caused Dr. Dake to pull the plug and stop seeing everyone, almost without notice.

I wonder who feels sheepish now that they have been scooped as an institution? I have not yet even seen a protocol out of them.

[Billmeik]

so the meeting I thought was on the 5th is on the 7th in Hamilton. I hope somebody goes and reports back...

[newfie-girl]

mshusband,

cheerleader is just the wife of a person with MS. But this site and the CCSVI facebook page, and her contacts with Dr Dake and her contacts with Dr Zamboni, and "The Liberation Procedure" documentary... all these are ultimately due to cheer's efforts. It is cheer who read Dr Zamboni's 2008 paper and started the search here in the USA. We owe a lot to her. She and her husband should be in the audience when Dr Zamboni receives the Nobel Prize for Medicine !!!

ozarkcanoer

I think that would be a wonderful tribute to Joan and Jeff, (let's see what we can do about that, any ideas?

[jimmylegs]

and i am pretty sure it was .. forgive me... dom? who brought this paper to TIMS' and cheerleader's attention - but cheer definitely deserves props for taking it to several new levels..

[Cece]

However, applying heat does help! Heat thins the blood, not in the entire body, but just to the specific area.

Vonna, I will have to try this, I've seen those pretty little bags of rice before (I have a friend who used to make them). On my own I would never have tried heat, what with the heat intolerance.

[Vonna]

If someone writes the article, I'll post it here.

http://ccsvivictory.club.officelive.com/Awareness.aspx

[happy_canuck]

UBC is only talking of doing angioplasty surgeries and, with a double-blind study, they will need to fake that part too. I would hate to be the one in the control group thinking they are ballooning my veins when all they are doing is going in and taking a look. Usually these studies offer treatment to everyone who participated at the conclusion of the study, but it still would be miserable to find out I hadn't been treated.

Sandra

[Algis]

How could we 'fake' a ballooning? Don't we feel when they expand the balloon in the vein?

That seems a bit odd to me...

[Johnson]

UBC is only talking of doing angioplasty surgeries and, with a double-blind study, they will need to fake that part too. I would hate to be the one in the control group thinking they are ballooning my veins when all they are doing is going in and taking a look. Usually these studies offer treatment to everyone who participated at the conclusion of the study, but it still would be miserable to find out I hadn't been treated.

Sandra

My (limited) understanding is that they will angioplast half the group, and if that group shows remarkable improvement, they will angioplast the rest. I do not think that there will be any sham surgeries. That would be unethical.