Monday, November 1, 2010

To Diane With Love

 Dear Diane at A Stellar Life. Here is my rebuttal (in red) to your post regarding CCSVI and the "liberation surgery"


 MS: Enter The Decision Zone

"Decisions, decisions, decisions, MS causes me to suffer from DO (Decision Overflow). Now I need to decide what I believe about the much talked about MS "miracle cure" CCSVI (Chronic Cerebrospinal Venous Insufficiency) surgery. A little balloon in a vein and I'm on my way to recovery! I've always liked balloons"

This flippant comment does nothing to help anybody but Hey, It's your blog!!  I have never heard of "liberation surgery" being called the miracle cure. Anyone who claims such, is irresponsible.


"In 1990, I had to make a decision about going into the Copaxone trial. That would be the first of many therapy decisions I have had to make. I hate this process because I never feel I have enough data to make a good decision. Nothing offered ever makes complete sense. Nothing but keeping up with general good health habits like diet and exercise and basic body testing."


There is tons of information out there about CCSVI which I would be more than happy to direct you to.
At least you had the opportunity to decide; for better or worse.   We, who want the surgery are being denied this.

"CCSVI is not passing my test. I have to use all the information I can collect about it, then think about my and other's (I know IN PERSON) MS experiences. Blogs are helpful, Wheelchair Kamakaze has a fantastic post about CCSVI here. My local TV station ran a story about some people from Seattle who are demanding it and the thoughts of my (so far) favorite neurologist.
So it's not passing your test.  How did you test it? Why throw a wet blanket on it? Nobody is saying you have to have the surgery
 
Here are some unanswered/mysterious questions that need an answer to pass MY test:
Why is myelin never mentioned? I thought MS was like electrical wires with the insulation being torn off, thereby causing shorts. I'm not hearing how CCSVI will repair myelin, even though my own body once repaired it. No talk of MS being a CNS (Central Nervous System, which includes brain, spinal cord, and every nerve.) attacker, just a lot of talk about plaques in the brain.
I had a HUGE plaque in my brain in 1990, but by 1993 it was completely gone. Where did it go? Docs have no clue. So who can say a drug or CCSVI repair can make fewer plaques? Fewer than what? Fewer than how many?
 
Myelin is not mentioned in regards to  the surgery That is correct. The surgery doesn't repair Myelin, but doctors think it may reduce Myelin damage. It might not, but so far nobody else can claim that the common MS treatments repair or prevent Myelin damage. Myelin repair is an important avenue to explore and maybe the eventual cure. But isn't it just possible that just Like MS is different for everyone, so might the treatments be?

The people who had gathered to speak in favor of CCSVI (on the Seattle TV show) were all sitting on bleachers just fine, no wheelchair in sight. What was their MS stage? Newly diagnosed? Relapsing/remitting? If so, I am back to same problem I have with the DMD (disease modifying drugs)--MS naturally relapses (goes away) in the majority of new cases, sometimes never to return.


No wheel chairs at the Seattle TV show? Lots of them at the rallies I go to AND lots of those folks have had the surgery and say they feel better. I know because I have talked to them  No it hasn't helped them to walk but they  seem happy with the results and that is good enough for me. Some claim they are able to get out of thier chairs and move around with a walker or cane for a spell.

CCSVI does not help everyone with MS. Why not?

No it doesn't. They don't know why, just like nobody in all the years of research and billions spent, can explain why some treatments work for some but not for others. Heck they still are no closer to knowing what causes MS, but maybe, just maybe,CCSVI research will lead to an answer. 

"The Youtube videos show people walking quite loopy. How were they before and why wouldn't they all have taken a "pre" video? I NEVER walked loopy. I was slow and sometimes the leg would not lift or foot drop, but the walking I have seen is...interesting. I base this not just on how I walked with progressive difficulty, but also have watched friends with MS as they would attempt to walk with cane, walker, commando. Sure, I know everyone is different, but wouldn't I have seen ONE friend walk in such a manner? I have seen people with OTHER diseases walk like the YouTube videos, but it seems to show either a strange walk or a perfect walk. The perfect walk after DX, I have done. I even ran one day! (Last time I ever ran too.) All this years after DX, while 6 years after DX I could not MOVE from chair to table just 3 steps away. IV Solu-Medrol and I was back A-OK and that full body numb never returned. (The full body MS-numb kept me from walking.)

In other words, YouTube is not verifiable.

You doubt the veracity of the Youtube videos? Once again I say if people think it has helped them that is good enough. So you have never seen anybody walk that way?  Not until you have seen the way  every single person with MS walks, will you be able to say that nobody walks that way. What possible reason would these people have to lie?  Nobody is making big money off of liberation surgery. In  fact some doctors were doing it no charge, that's how much they beleive in it. That is until they were threaten with losing their hospital priviliges I don't see Dr. Zamboni getting rich.
  I don't rely on Youtube for facts. I have seen several news shows with folks who claim it has improved their walking and I beleive them.

People are rushing to decisions. gives me time to see their outcome. Researchers need to use proven methods to test this new "miracle." People live with CCSVI and have no symptoms of anything, according to vascular doctors it is not terribly uncommon, our veins are very small--it happens and the blood just uses another vein.

Yes people are rushing. What have they got to lose from having a well tested, inexpensive, safe surgery? A surgery that is used  to treat  all sorts of illnesses and has the potential to treat many more? Ask Dr. Zidanov in Buffalo. He will be happy to tell you about his promising research to use the surgery for many things besides MS.  Angioplasty is nothing new. Heart patients get stents all the time.Over and over if they want; regardless if their heart disease is caused by an unhealthy lifestyle. You can be fat, smoke, drink, and not exercise,and can get as many stents as you desire, but I can't?
People are spending thousands of dollars monthly for drugs that don't work They aren't allowed to spend a few thousand to have a surgery they think might help them? Does that make sense. 

Off point, but why are people with MS so fear driven upon diagnosis, while the rest of society doesn't seem to care so much? If MS is so horrible (and it IS) then why can't the places we donate money to make this a priority---awareness of the horror? Instead society has been treated to stories and photos of those with MS who scale mountains and star on TV shows and do just wonderful things! People who live with normal course MS need to be shown, in our eventual wheel chairs with pee bags at our side.


I have no answer except to say that is exactly why people are fearful. Because nobody gives a damn!! 
When I was diagnosed all anybody wanted me to do was go to a shrink and take about 5 different kinds of drugs. Now they tell me to slow down and be cautious about this surgery Why? It's OK to poison myself with unproven drug therapies( prove to me they work, they don't) but I should sit back and wait five, ten years, until they have more proof the surgery works?
Fearful. Yeah I'm fearful because ever since I came out with my MS I have been treated like crap by people who should know better, but don't.

Why do some people with MS not have CCSVI? Who can say CCSVI is not just another symptom some MSers get? Why do some people with CCSVI NOT have MS? Too many unanswered questions for me to make a decision right now. Am I running out of time? Well, in 1990 at my DX, I was told people with MS by and far have a normal life span, minus a few years. I am secondary progressive and haven't had a relapse in 6 years. The progression is slowing pretty good and I am even improving in the last year. So...

So... we all know that MS is different for everybody, but once again this is not a valid arguement to postpone having surgery" IF A PERSON WANTS TO!!" The research suggests the majority with MS do have CCSVI. Some tests did not follow Dr. Zamboni's protocols and that could be why some are showing as not having CCSVI. 
Who  can say CCSVI isn't just another symptom? You're right however, that's still not a reason to say I should wait for the surgery.

Of course, if you follow my blog, then you know I am not surprised neurologists don't want to refer patients for testing. Nor, am I surprised that this whole idea makes BIG PHARMA sweat injection needles! Both stand to lose a pile of money.
Yeah agree with you there. Which gives me more reasons to support the surgery.

"Another decision. Just another day with MS."

No it's not just another day with MS. So much for solidarity. If you don't want the surgery Diane that is fine .
Your post only causes more doubt, more cynicism, and does nothing to help. You don't want "liberation surgery" move over and get out of the way of those of us who do.

I am supporitng a class action suit against my government that denies me my rights under the health act
I am not a child, I am  an intelligent woman and I think angioplasty might help me. 

I am so disappointed in American bloggers who either ignore CCSVI or brush it off. I have already deleted several MS "expert" blogs  that push the drug mantra or tell me to do yoga.  Why can't you respect those of us who believe in angioplasty  and help us get the right to have it done?   If you don't want to help kindly shut up and let us get on with it.

 


7 comments:

Dagmar said...

Thank-you. You expressed what I feel exactly Carole, taxingwoman. I do not understand this negativity towards CCSVI. It is a discovery that is helping so many of us. I had angioplasty in Germany in August. I had 80 and 95% closed jugulars. Luckily my azygous vein was clear. Wow! This made such a difference. I guess some people like their MS label; I personally want to be fee of MS. Each to their own. Dr. Zamboni deserves to win the Nobel Prize for his discovery.

Diane J Standiford said...

I'll say whatever I want on my blog. Every word you wrote just defends my position. I am (to use your words) "disappointed" that you question my solidarity with other people with MS. In MY words, I am saddened by your anger toward my post and me.

Lisa Emrich said...

Thank you Carole for this rebuttal. I follow what has been going on in Canada regarding suing the government. In fact I was talking to someone about it a few weeks ago at a conference.

Not keeping up with every detail of the research and updates, I look to other passionate bloggers when I have a question. They are the experts in my opinion.

A woman at my neuro's office is actually in the Buffalo treatment trial. She has noticed improvement but still goes into the office for monthly IVIG treatments. I've learned slot from her as I've been doing my monthly steroid treatments.

It's been a year since I've been on an official MS drug. I still feel unprotected (the fear-mongering advertisements are powerful) although I know that I'm better off.

I'd love to see the 'documented' evidence as it slowly comes from trials. But that will take such a long time. If/when the local teaching hospital gets their trial underway, I'm really tempted to sign up.

But so far the idea of CCSVI is still theoretical in my practical life. I hope that there really is something to it which can help many folks currently diagnosed with MS. But until then I quietly read what others are reporting.

Again, thank you for continuing to be on the frontlines. We all will hopefully benefit from it somehow.

TickledPink said...

Hi Carole, my former neuro is applying for a Pepsi Refresh Everything grant to fund research into CCSVI and LDN. Can you please take a moment to cast a vote so he might see this become a reality? We need all the funding we can get for non-pharma research!

Here's the post: http://fty720.blogspot.com/2010/11/vote-now-to-help-fund-research-for.html

Taxingwoman said...

Diane go right ahead and use your blog to take away hope from others if that makes you feel good.


Lisa you are only here to come to the defense of your buddy Diane.
I suggest you maybe do a little more research. Relying on "passionate bloggers" is not a very good way to educate yourself.

I am really surprised at both of you in your total lack of support for this issue.

Taxingwoman said...

Hi! Dagmar
Interesting that the negativity comes from those who haven't had the surgery I only here good things from those who have.

Lisa Emrich said...

Carole,

I was referring to you as being one of the passionate bloggers I trust to know much more than I in the topic of CCSVI. I also look to Marc (Wheelchair Kamikaze), Mitch (Enjoying the Ride), Ginger (MS, CCSVI, Liberation Surgery & Me), CCSVI Mammananny's Story, and others. I turn to CCSVI Alliance for sound information (a group for which Marc and Mitch serve in board member capacity) as I believe they have done a good job in clearly presenting the information.

I'm sorry that you are surprised at an apparent lack of support for CCSVI. That's not my position at all. I just do not feel comfortable attempting to discuss a subject which I know I haven't spent hours, days, weeks, or months studying.

I do, however, very much appreciate the posts written by folks much more eloquent than myself such as this recent one by Marc - http://www.wheelchairkamikaze.com/2010/10/comprehensive-roundup-of-ccsvi-info.html.

I wish you the very best, Carole, and sincerely hope that testing and treatment for CCSVI may become a reality for you in Canada in the near future.