Will studies in 2011 be enough to decide validity of CCSVI theory?

Here is the link to the CTV (Canadian Press) story for which I (among others) was interviewed before Christmas: CTV story.  Personally, I don't think that there will be enough evidence coming out from studies in this next year to make a difference, but I hope that I'm wrong for the sake of people who are pinning great hope on CCSVI treatment.

Oh, and here is one of the pictures of me that ran with the original CP story: CP photo. Interestingly, the long caption on the photo makes it sound like I was one of those who had a negative experience with the treatment, whereas the story itself made it clear that was not the case.

Chiropractic and neurodegenerative diseases

My friend Shelley has sent me the link to a blog of a chiropractic doctor who is now retired but who has spent many decades studying the possible anatomical causes of Alzheimer, Parkinson's and MS.  He has written some articles on the matter and, most recently, a book on his findings and theories (The Downside of Upright Posture: The Anatomical Causes of Alzheimer’s, Parkinson’s and Multiple Sclerosis, Two Harbours Press).  In his blog, Dr. Flanagan also discusses possible relationships between his findings and the CCSVI theory.

I find this interesting, in part because my MS symptoms started four months after a severe body-surfing injury to my shoulder and neck in Thailand... and many others with MS seem to have similar stories.

Wishing everyone a Happy New Year!

My New Years wishes:

1. For those who have been liberated, I wish continuing improvement or at least an arrest of the progression of their disease.
2. For those who wish to be liberated, I wish you get a place in a short line and that, by the time you get to be treated, many of the uncertainties concerning the best way to do the procedure are clarified, that you have a stress and problem-free treatment and that you have improvements in your symptoms.
3. For health care providers and governments, I wish them insight and compassion to work with MSers to find ways to improve the quality of their lives.

For my part, I don't need any Christmas gifts because I have been treated, the treatment seems to be holding, and the quality of my life continues to improve... who could wish for anything more?

Thoughtful Argument

Here is a posting from EJC of the UK on TiMS that was part of a discussion concerning how CCSVI and its treatment should be viewed:

CCSVI is the beginning of the understanding of what is currently defined as "MS".

Over the next decade what we understand as MS is likely to be broken down into a number of similar but significantly differing conditions that lead to roughly the same end result, albeit in differing degrees.

The medical establishment will gradually start to unravel what they've not been able to understand for years.

CCSVI, or it's theory is the trigger to unlocking this understanding, it is genuinely a once in a lifetime medical breakthrough with regard to the understanding of MS.

However what MS sufferers don't have is the time to sit and wait for the medical community to compile all the evidence in a long and drawn out manner that could take 10 - 20 years. During which time many people may die due to complications of their condition.

Increasing anecdotal evidence exists the liberation treatment improves the quality of life of a large enough percentage of people who choose to undertake it that makes it worth contemplating.

For want of a better phrase "It's worth a shot".

No one is being press ganged or conned into this treatment, it is a free choice that we take in the full knowledge that the people undertaking this procedure are still learning it and that the long term effects have yet to be quantified.

We read as much as we can, ask as many prudent questions as we can and those of us already booked into the system will report as much as we can in an effort to get the information out into the big wide world.

Every day I watch Emma struggle with the normal things in life, over months and years she is gradually declining. She does not have the time to sit tight and wait for all the i's to be dotted and the t's crossed, she needs whatever help she can get.

This will have cost us around £8,000 to £10,000 when it's all done. Fortunately I can afford that without having to borrow money and trust me I've done far more dumb things with £10,000 than a private medical procedure.

I'm spending this money for Emma in a hope that it improves her quality of life, if this is a "Cure" for newly diagnosed patients then great - but it will never cure Emma, too much damage has been done. But if it improves her quality of life and arrests progression, then in my mind it's worth £100,000.

Some people are too far along in their progression that "choice" is no longer an option - having liberation is almost a necessity as so far everything else they've been offered has failed in almost every way.

Inge gets fixed a second time!

Here is my Dutch friend Inge's report on her second procedure, this time in Belgium:

Hi Ted!

Everything went very well. Dr. Beelen managed to get half of the old stent out (I have it here in a little container, swimming around..It looks like a shrimp in barbed wire...Some of the scar tissue came with it, so it looks rather dodgy).

He couldn't get the upper part out, because that was grown into my vessel (wall? I do not know the word). He placed a new, covered stent in the old one, and that is sitting tight there. Everything flows again. My neck is till a little sore, but that will pass.

On the left side he ballooned a 40-50% narrowing. And he completely opened up my azygos (100% narrowing). I am especially glad with the latter, as I understand that the azygos is quite important for mobility. I already experience some slight improvements:

• I can flex my right foot when lying in bed: before my leg felt like a rock and I couldn't move it.
• I can lift my right foot better: instead of dragging, I can make the beginning of a step.
• I stand more stable and more powerful (especially under the shower)
• I feel a sensation in my right hand: it feels less numb
• I can pee more easily
• it seems that the spasms are less

So impressive hey?

I am very very glad I had the 2nd surgery.

The interview went well: do you know when it is published?

We'll email! Take care

X

Inge

Know what jugular/azygos veins look like? Check out this site

It's still beta and not super user-friendly yet, but it gives a wonderful lesson in anatomy, including showing what the azygos vein really looks like: Google Body Browser

Very neat, and you can use search to find any part of the anatomy.  It may only work properly with the Google Chrome browser, though.

A CCSVI Christmas Carol Story

A very nice story of CCSVI treatment success just in time for Christmas (copied from a TiMS posting):

I am an attorney, and generally a very cynical person. I am usually of the "glass is half empty" view. Thus, when I heard of this procedure about 5 months ago I was not very interested. My wife Marcy has very advanced MS, 100% bedridden, feeding tube, and unable to speak for almost two years. She is end stage. It was about a 17-year (with interferon/copaxone/etc.) road to this stage. Nothing the doctors had been able to do made much difference.

Something about this procedure nagged at me, though. I started reading up on it at sites such as this one, and decided to start the process. We live in San Diego, so I decided to go to Hospital Angeles in Tijuana, about 15 miles from where I live. It was a big pain to get a passport given Marcy's being unable to communicate (and with an expired driver's license), but we got it all together and headed south. Marcy was not cognizant of what was going on. I felt that even if something terrible happened, she could not be worse than she currently was.

The testing showed one jugular was 70% blocked, the other 99%. The latter required a stent to keep open. I did not want to do a stent, but felt Marcy had virtually no hope as it was, so it was not the more serious decision it might have been if she had been in better condition.

They had to knock her our for the operation, because you have to stay very still and she would move. Though she came through the operation fine, her breathing was adversely affected by the anesthesia (apparently it can cause much more mucous, and she cannot swallow). I had to rush her back to San Diego, and after five days in a local hospital her lung infection improved enough to go back to her nursing home. Up to this point there was no change, as she was very ill and asleep almost all the time.

However, right around Thanksgiving she suddenly began to speak! Not long conversations, but short ones. She is saying a few words every single day now. The nurses at the home are in shock, as am I. This morning I asked how she was doing, and she said, "I feel fine." I told her I was going to get a Christmas tree and would she like to see it, and she said, "Yes." Her eyes are bright, and she is following us around the room. When we ask her to smile, she gives us a beautiful smile.

To some people, such things are minor. They are not to me. I prayed about this a long time, and was very worried I was doing the wrong thing. but I was not. This is not a "placebo effect," since she had no clue what was going on. She may revert, she may get even better, she may suffer a clot or migrating stent and die. However, I know this: in her case, this CCSVI created a radical change in her condition, and within weeks. I am not a skeptic anymore.

I realize there are risks with this procedure, and for many the risks may outweigh the potential reward. However, if any of your friends or family members are near death as my wife was, I truly believe you should have them examined for this vein blockage. My home email is metalteam@cox.net if you have any questions of me (checked every few days, so if I don't get back to you right away please be patient).

Thanks to the doctors in Mexico who made this possible, to this site and others like it where people can freely discuss such issues, to Dr. Zamboni/Dake and others like them, and to the Lord, who said, "Ask and it shall be given you, that your joy may be full." Merry Christmas!

CCSVI Tracking Points to Excellent Results

With well over 300 liberated people self-reporting so far, the overall results that can be seen on CCSVI-Tracking.com are much better than I had even hoped for when I went to Poland to be treated last April:

Notice, especially, the great improvements in fatigue reported by almost 75% of people reporting.  I see that the Alberta government is finally thinking about doing some tracking of the results of Albertans who've been treated outside of the country (see CBC story and discussion).  Why isn't this being done nationally?  Why has there been no leadership from our federal government?  This should be a "no-brainer", but obviously that's not quite true.

Reminder about CCSVI Tracking

The site CCSVI-Tracking.com has more new graphs and ways to look at the data, so anyone who is interested in the results of CCSVI treatment can see the self-reported impacts of over 300 treatments on MSers.  I would also recommend that anyone who has been treated or is soon going to be treated register on the site and begin entering their data so that we can all get a better understanding of what happens to the symptoms of treated people over time.

Not all Euromedic CCSVI treatments are successful

Here is a report from my friend Inge who was treated in Katowice a day before me.  Note that for several reasons (including a botched stent placement in Katowice), she is going to Belgium to have her stent replaced:

My first Liberation treatment was in Katowice, end of April. I noticed immediate improvements. I could stand up straighter than before, longer than before (I could for instance shower standing up, something I wasn't able to for a long time already). I had a substantially improved balance (tested and verified by my physio) and more strength in arms, hand, legs and torso. I was able to walk a little bit faster behind my stroller, I could lift up my left leg more easily and so forth. I certainly had more energy.

For 2-3 months everything improved. I felt that the MS progression had stopped: for the first time I did not have that feeling any more that an avalanche was threatening me and I couldn't do a thing about it.

Then slowly, spasms returned. And I couldn't walk that easily anymore behind my stroller. I could hardly turn in bed. At first, I thought it had to do with the stress of renovating our house. And then I thought it had to do with staying in a cottage for the summer holidays and not sitting on good solid chairs. And then I thought it had to do with the amount of work I took on. Excuses, excuses. I had the sense that something was wrong, but things were inconclusive: I still had my balance, i still had my energy...so what?

On the 9th of November, an appointment with dr. R. Beelen at the OLV Ziekenhuis in Aalst Belgium gave me the answers. The doppler showed clearly that my stent in my right Jugular behind my collarbone was completely clotted. Looking at the operation images from Poland, Dr. Beelen saw that my stent was dented and broken in some places. (Already during surgery!) This and the description of my symptoms confirmed to dr. Beelen that my stent had been clotting up over 2-3 months since the first procedure. It takes time to fully close up, that is why my symptoms started to reappear so slowly. Strange thing, and difficult for me to comprehend is the fact that other symptoms remained: balance, energy were all good.

Dr. Beelen told me that the edges of the stent are cutting in my blood vessel, so there is an explanation for the slight pain I had al these months. Vessels do not have nerves, but the disturbance of the vessel creates all kind of reactions in the vicinity of the stent, so that is why I experience pain.

Dr. Beelen also told me that he would recommend a much tougher regime on bloodthinners than Dr. Simka does. Especially in my case, as I have the Leiden Factor V mutation, which is a higher risk for trombosis. He would for instance prescribe fraxiparine for 3 weeks instead of 1, use coumadin instead of the pavlax dr. Simka subscribed. And he wants everyone that has a stent under close supervision of the thrombosis service. They draw blood every week and adjust your medications when needed.

So that is what I am facing when returning to Belgium next week: Dr. Beelen is going to insert a new stent in my old stent, flatten the old one out and check the jugs and the azygos once again. I am very looking forward to having this second procedure, as I expect it to solve a lot of the problems I am experiencing now. Luckily, Dr. Beelen referred me to an organisation that is trying to get my operation covered by insurance: the Royal Doctors. Last week I was able to get a referral from a vascular surgeon in The Netherlands, and this will improve my chances on coverage.

What I learned from all this is: go local! It is very important to have good follow up care. A check by the thrombosis service, close contact with your GP. I am glad Dr. Beelen is also thinking about the financial aspect of things. because this will otherwise cost me another 6500 euro. We will see how things work out.

So next Friday the 17th is the big day. Hopefully everything will turn out fine. I will keep you posted.

take care and have a happy X-mas.

X

Inge

Dr. Hubbard connects MS to CCSVI theory

A very clear video explanation of the connection between CCSVI and MS: http://www.komonews.com/home/video/106175483.html

My mobility continues to improve

I saw my physiotherapist today.  According to her tests, my mobility measures have again improved. :-)

Alpha Liopic Acid anyone?

My friend Shelley sent me this:

I’m adding Alpha Lipoic Acid (ALA/LA) to my long list of daily supplements. Below are some interesting articles that support the use of it for MS sufferers.

http://www.thenhf.com/article.php?id=414

http://findarticles.com/p/articles/mi_m0FDN/is_4_9/ai_n9479468/

http://www.direct-ms.org/pdf/NutritionMS/AlphaLipoicAcidtrial.pdf

Do any of my readers have any long-term (or even short-term) experience with this?

Embry paints Dr. Freedman as unscientific and unethical

Ashton Embry uses the opportunity to respond to a recent letter from Dr. Freedman to a patient that basically dismissed the CCSVI phenomenon as "cultish" and Dr. Embry as a rock scientist who knows nothing about medicine.  In his reasoned response, Embry lays out the strong evidence-based reasons for accepting that CCSVI impacts on MS symptoms, and also conjectures as to why Dr. Freedman might want to take a non-scientific approach to fighting the idea. All in all, another good article from Embry: Embry rebuttal in Facebook,

Research doctors question make-up of CIHR panel on CCSVI

These researchers seem to be saying what many of us have said previously: that the make-up of the CIHR panel giving the federal health minister advice regarding CCSVI was seriously flawed.  Is anyone in the government listening? Click here to read their arguments.

BC/Yukon MS Society President calls for Minister to move on CCSVI

Thanks to my friend Shelley who found out about this letter today.  Does this mean that the MS Society of Canada is finally changing its stance, or is this a divisional president "pushing the envelope"?  Note that this comes on the same day that our friend Dr. Jock Murray was on the CBC saying that the New Brunswick government is wrong to support CCSVI "because other governments aren't supporting it yet".