Bad News --All Dake surgeries canceled even w/ appt.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby cheerleader » Thu Dec 10, 2009 3:44 pm

Thank you for the detailed and clarifying post, Lisa. Talk about good news/bad news. I hope that there are more answers ahead for you, and I am so (selfishly) glad you went to Stanford, even though immediate treatment was not an option for you. I believe timing is everything, so there may be a good purpose in the lag time between your diagnosis and eventual treatment.
thanks again,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Advertisement

Postby CureIous » Thu Dec 10, 2009 3:45 pm

Wow what a report, thanks for the detailed info, much to chew on, and confirms what we basically thought from the beginning, no need to give them more coverage on it. Fantastic, so glad he has someone above to take the heat so he can do what he does best, take care of US. When I saw my GP yesterday and was filling him in on all the latest, I asked him, "you do know with hospitals, universities and such there is much politics involved?". He just laughed and said, "you have no idea, I deal with it every day". My question of course being tongue in cheek.

So we thank you for even further validation and clarification and very well done. Am so glad people will continue to get fixed for their venous issues, maybe the Neuro department can send a team out to interview us one by one and see how that works out for them?

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby prof8 » Thu Dec 10, 2009 5:11 pm

Hi Lisa,

Thanks for the detailed report. I got much of the same information. I just wasn't sure how much to put on the forum because Dake kept saying I probably shouldn't be telling you this." :).

I'm interested in your report that Dake said you could be in the group that had surgery initially in the trial. He said to me that we would be chosen randomly with a name pulled out of the hat. So it would be luck of the draw. But at the end everyone can have it. So I am a bit confused. You also mentioned signing paperwork and confidentiality info. Can you send me a PM and let me know what you mean?

Dr. Dake told me that ABC and another network have already contacted him about doing a story so word will get out soon in the US. He also said his article on the pioneers got accepted by a top medical journal (a biggie, not like Journal of Vascular Surgery which he said was middling. That's the other thing.... Being in academia I know that it really matters where you get something published to have real "creedence."). Anyhow, Dake said the editors of the journal are so excited about his work with the pioneers that they have fast tracked the article (put it at the top for publication in the next issue). He couldn't tell the name of the journal though.

It all looks good. I think with Dake's article on the horizon, the start of his clinical study, the start of one on the east coast (someone mentioned this), a national network doing a story and the Buffalo info about to be released in Feb. for the first 500 tested, well things are about to explode.
Last edited by prof8 on Thu Dec 10, 2009 5:24 pm, edited 1 time in total.
User avatar
prof8
Family Elder
 
Posts: 189
Joined: Sun Jul 13, 2008 3:00 pm

Postby CRHInv » Thu Dec 10, 2009 5:17 pm

Lisa! Thank you so much for the amazing report. I agree with Cheer, I think this is going to work out just right for you. Have a safe trip home!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

Postby Shannon » Thu Dec 10, 2009 8:06 pm

Lisa - Your post was amazing and inspiring for all of us here (and everywhere)! You're right. I think that by all of us inundating our own neuros with the information may have been the wrong avenue to go here. I had wondered if I should instead go to my pcp and ask for a vascular consult, seeing that she seemed to understand CCSVI and was interested in the findings. Gosh, the information that you've posted is so positive, and I cannot wait to be a part of the study, if I am to be so lucky. :)
Shannon
Family Elder
 
Posts: 148
Joined: Mon Sep 28, 2009 3:00 pm

Postby ozarkcanoer » Thu Dec 10, 2009 8:15 pm

Just my 2 cents worth. Here in St Louis I have been advocating CCSVI with the neurology community and an interventional radiologist at the Washington University School of Medicine. See my thread about my neurologist :

http://www.thisisms.com/ftopict-9238.html.

And see my thread about The Big Names and the Hope Center :

http://www.thisisms.com/ftopict-8778.html

I am also communicating with a professor who is a neuroradiologist.

Sooner or later these two groups need to talk to one another. I would rather it be sooner than later.
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby jbro » Thu Dec 10, 2009 8:59 pm

I want to thank Lisa, Marc, and everybody at TIMS that take the time and especially their limited energy, and share what they have learned, for our collective benefit. I hope in the not so distant future to be participating in this study. I'm not real great for travel, but will make it.
Take care, John
User avatar
jbro
Family Member
 
Posts: 31
Joined: Mon Jun 08, 2009 3:00 pm

Postby Sharon » Thu Dec 10, 2009 9:28 pm

John,
Whenever it is time for you to travel, we will help you.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby thornyrose76 » Fri Dec 11, 2009 8:40 pm

patientx wrote:
I'd say at this point it proves that the true indicator of disability is Iron buildup, not the lesions in the white matter.


I think you have to be careful here. True, white matter lesions are not a good indicator of disability. But the studies done by Haacke are far from proof that iron buildup is the true indicator of disability. The main purpose of his study was to show that his new filtering and signal processing could more sensitively detect iron in tissue. From his paper:

The amount of iron deposition could reflect the extent of tissue damage, thus iron could be used as a biomarker to predict clinical outcome. This is a reasonable hypothesis given recent findings (27), which show very clear iron deposition encircling dilated veins in MS.


And the researchers can't say definitively where the iron comes from:

The source of iron deposition may be myelin/oligodendrocyte debris (17), concentrated iron in the macrophages (that phagocytize the destructed myelin/oligodendrocyte), or the product of hemorrhages from damaged brain vessels.


Iron deposition probably will turn out to be a useful biomarker in MS. But, to my knowledge, only one study has been done to try and correlate possible iron buildup with clinical status. Much more study needs to be done before we can say there is proof.


Wow, very informative and interesting-your comments.Thank you for that. Sheds real light on the medical field, someone needs to remind Neuro's that it should be about the patient, period.How much did everthing cost and how many days did all of this take?
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 4:00 pm

Thinking about the MS business and wondering

Postby Rebecca » Fri Dec 11, 2009 10:01 pm

After watching the "MS business" for so many years, I am somewhat cynical with respect to the motives of those selling treatments for MS. While CCSVI surgery may turn out to make sense, there are a couple of things that make me skeptical. Please let me know what you think of these.

First, I am wondering why the doctors are not trying an exercise program to enlarge veins if the veins are too small and a related weight loss program if needed. Anyone who has done much exercise at all knows that the more one exercises, the larger the veins get. Likewise, when one stops exercising, the veins get smaller. If we are worried about veins, shouldn't everyone who can jog be out there jogging? This makes sense to me especially since the research shows that those with MS who participate in aerobic exercise do perform better on cognitive skills tests. Also, doctors generally treat vein problems in legs through a combination of weight loss diets, exercise and vein stripping. Doesn't it make sense to try this first? Have others thought about this? What do you think?

Second, I googled Dr. Dake and I noticed that he had spent a lot of time working for companies that make and sell stents. Of course, since I did some PhD studies in one of the better management schools in the US, I then checked to see what the numbers might involve. I found that each stent typically sells for about $3,000. Of course, I then multiplied $3,000 by two or three stents per person and by about 50% of those with MS. The numbers added up quickly. Obviously, the stent companies would love to sell stents to MS patients.

I am sure that Dr. Dake is sincere in his desire to help but as a student of management, I also know that profitable solutions often try to find more problems even if the problems don't quite fit the solutions. I wonder if the economic incentives involved in selling more stents have clouded Dr. Dake's judgment. Have others thought about this? What do you think?

Finally, I heard one cardiologist say that veins are much more fragile than arteries and that they should not be stented. This cardiologist said that the fragility of veins makes this surgery too high risk. He also said that a little accident could cause a stented vein to rupture and cause death before needed emergency surgery could be performed. How about this? Has there been discussion of this?

I'll look forward to hearing the thoughts of others on these three issues. It seems to me that the best trial in the future would involve using Zamboni's methods. Those used by Dr. Dake seem rather scary to me. Also, I think they should test an exercise and diet program.

Rebecca
User avatar
Rebecca
Family Member
 
Posts: 30
Joined: Mon Nov 30, 2009 4:00 pm

Postby Johnnymac » Fri Dec 11, 2009 11:05 pm

HI Rebecca,

Figured I'd give you my 2 cents on your three questions :idea:

1) Absolutely doing the right things to promote healthy veins should be recommended and followed. I don't know that it would have that great of effect though on the particular venous issues that CCSVI describes. The stenosis seen in CCSVI doesn't seem to be tied to poor diet or exercise, but thats one of the unknowns still. My reference on this with my wife says its congenital, she's always been very active, eats well and even with her high level of disability she does a little yoga and rides for a couple of miles on a recumbent every day (edit: to clarify she rides for about 1 mile a couple of times a day when her right leg won't stop spasming, not for exercise). Of course, we don't know if she even has a stenosis yet because she hasn't been tested so its pure speculation.

2) Yes the stent producing companies stand to make a good bit of money in all this, but it dwarfs in comparison to the monthly revenue stream the current MS drug makers are enjoying. I'd lean more towards saying Dr Dake is more confident in the use of stents having working for the companies you mentioned, not trying to pad their pockets for the sake of it.

3) From what I've read veins are absolutely more fragile than arteries; however, stents have been used in veins for other disorders for quite a while with fairly low incidence of serious consequence. Not sure what the numbers are but those numbers may not be a good indicator of the success rate in MS patients, we wont know that for a while. My wife is leaning towards (if CCSVI is found) angioplasty, even if there is a chance of re-stenosis. The reasoning being if an angio can clear tihngs up for 12-18 months, we hope that in that time the stenting can be more perfected in CCSVI patients. If the CCSVI theory proves true I think this process of learning the best and safest way to place stents in these delicate places will be THE most important piece of research in the short term.
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 3:00 pm

Postby Algis » Sat Dec 12, 2009 12:07 am

Rebecca: my tuppence too :P

1) If the veins are pinched/twisted; you can exercise for another 150 years and they'll stay the same.

2) It is in a way re-assuring if Dr.Dake knows what he's talking about. If he finds it profitable in the same time well; that's the way capitalism is working; good or bad.

3) I am sure they are already studying/prototyping/producing stents suitable for CCSVI and demands create the needs.

It is still a very personal choice that only one can do for himself; even after 10 years of further development/progress.

Be well :)

Algis
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Re: Thinking about the MS business and wondering

Postby CureIous » Sat Dec 12, 2009 12:09 am

Rebecca wrote:After watching the "MS business" for so many years, I am somewhat cynical with respect to the motives of those selling treatments for MS. While CCSVI surgery may turn out to make sense, there are a couple of things that make me skeptical. Please let me know what you think of these.

Rebecca


All great questions and observations of course. There's always the money side to be considered. While exercise and diet certainly DO have an effect on one's circulation in general, in specific to the jugulars involved, the impact will in effect be mitigating and/or forestalling the consequences of turbulent and refluxing blood flow back into the brain. No two ways about it though that you are dead on with that. But at some point the body is no longer able to compensate for the lack of flow and the turning point is reached, the cascade of events begins and we "get" MS.


Yes, Dr. D. invented some stents, not sure about the working for companies part, will go by your research on that, but having looked the man in the eye, and speaking with him, (oh and the whole operating on me part too ;) ) and seeing his excitement level, trust me, he doesn't NEED nor care about the money. His successful cardiovascular practice is more than sufficient for all that. That he is also able to get the stent companies on board to pay for stents for the study, is a bonus for ALL of us, that means more people will get treated and less will go for stents. Hey that might be a good stock pick lol. Frankly, the answer to the clouding judgement via $$ signs is resoundingly no, not a chance, and I'll take that to the bank myself... And yes, we've had extensive talks on here on the hammer/nail analogy. Fact is he didn't seek this out it sought him out and he then applied his expertise to solving the problem. Of course if it was strictly a neurological problem he was treating, yes that would be a bit suspicious and out of his league and specialty, but he's doing what he does best and has spent his entire career cultivating, and is constantly seeking to improve that.

The challenge here is to NOT find a comfort zone and land on it. Hopefully that day will never come, there is ALWAYS a better way to do things when new info presents itself.

Keep in mind also we aren't strictly speaking of veins that are undersized, per se. There are quite a few variations on the theme, crimped cramped pinched twisted and some even MISSING, inverted valves, valves that aren't working correctly, mysterious membranes that veil the inside of the veins, and combinations of all the above. This is not a one size fits all paradigm here it is as unique as the individual, and the therapies involved indeed need to be tailored correctly as well. Hey you could always do an angioplasty, worked for half the Zamboni crowd....

Oh and welcome aboard.

Mark.
Last edited by CureIous on Sat Dec 12, 2009 12:26 am, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby selkie » Sat Dec 12, 2009 12:13 am

Rebecca, On your first point, if you watch the interviews with Dr. Zamboni, he mentions patients who had bones protruding into the veins, flattening them. Obviously this is a structural defect (most likely from birth). A small # of patients had veins twisted around - some required open neck surgery, though most people didn't have to go through surgery that extreme.

The point is, if it's a structural defect, probably from birth, all the exercise and correct diet in the world isn't going to fix it. It's like saying you can cure a club foot or cleft palette with diet & exercise!

As for the risks of surgery, granted they are there. But any kind of surgery, even a simple one, carries a risk of death. I was made to sign a waiver saying I understood I could die when I had my hysterectomy.

The point is, the longer iron deposits are allowed to build up in the brain, the more damage and the worse the MS may get. If your MS is mild, then surgery is probably not for you. It's a quality of life vs. quantity issue for a lot of people. And some of us who are older don't have time to wait for them to perfect the technique when quality of life is become so poor.
User avatar
selkie
Family Elder
 
Posts: 222
Joined: Sat Nov 21, 2009 4:00 pm

Postby Johnson » Sat Dec 12, 2009 12:44 am

Good points by all, and Mark knows the man, and the man knows Mark (intimately, I would say...).

Then there is the EDDS. Someone who is at 7.5, or 8.5, or whatever, is going to have one h-e-double hockey sticks (hell) of a time to get enough exercise to have any meaningful effect on the cardio and veins. My own EDDS is about 2, but I have crippling fatigue, and balance problems, etc. I have not been able to ride my bike for years, and most of days, it's all I can do to make dinner for my family.

Your thoughts are very valid for reasonably fit people though.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service