Marie's Stents CCSVI

Tell us what you are using to treat your MS-- and how you are doing.

Postby mrhodes40 » Mon Jun 14, 2010 5:17 am

LOL!! yes it is the blood clots in the leg that get me...
8O
probably end up with some in my small cerebral veins too... :evil:

yes I am down with the model no question. The problem is good treatment. Mine is obviously NOT correctly done with all due respect to Dr Dake who is learning...and full acknowledgment that I knew I was signing up for a person who was learning

Look out-rant --run the other way--- :roll:

How many people have had partial treatment like mine?

How many of such people will be part of "Double blind placebo controlled" studies that have been forced ahead of the necessary skills being available/developed in the docs performing the procedures?

I assume my left vein has a lower down issue of some sort. Dr Dake has about a 6% azygos discovery--so does Dr Simka. Zamboni has 86%.

TO me that may mean that MOST of us are getting partial treatment.

It's a problem.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby patientx » Mon Jun 14, 2010 6:09 am

Marie,

Hope you are able to find some answers to your problems.

I have a question about one thing:

You may wonder why didn't I just request a venogram at Stanford? If you read through this whole regimen thread it will be clear that I had significant issues with rectus sheath hematoma and accessory nerve damage and problems staying stable on the Coumadin.

I could see your concerns about the venogram and hematoma, but how would the venogram affect the nerve or involve Coumadin, if you weren't having another stent installed?
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Postby CureOrBust » Mon Jun 14, 2010 6:33 am

I think it will be MANY MANY years before any one of us receives the fully "correct" treatment. How many years have they been doing heart transplants? have they got that "right" yet? Lets not event mention how many years they have been "treating" MS....

All I could ask of my surgeon is that he does the best he can, and I would of selected him as someone who appears to be quite knowledgeable in his field, and is in contact with others around the globe who are performing this work. We are all at the mercy of the fact that this is still all in its infancy.

patientx wrote:how would the venogram affect the nerve or involve Coumadin, if you weren't having another stent installed?
I of course cannot speak for mrhodes40, but I have read of a number of people with stents have had to have their stented areas re-ballooned. This may aggravate the nerve issue in mrhodes40, and may require further Coumadin treatment also.
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Postby CRHInv » Mon Jun 14, 2010 4:29 pm

Hey Marie,
I like your plan. Please keep us updated with what happens. I really like hearing how you sort through all of this. I have so much respect for the your understanding of all of this.
I have always felt like my treatment was partial also. I don't have even a small problem with it. I am so greatful to everyone here and Dr. Dake. I am so glad for the tremendous improvements I have had. I feel like it will give me time to wait until I think it is time to look further. My one year will not be until November or so. I am so interested to hear what is found. I am also interested to hear how everyone else fairs.
Take good care!
Beth
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.
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Postby magoo » Mon Jun 14, 2010 7:12 pm

Hi Marie,
Beth just pointed me to your thread here. It was nice to read your story again in full. I'm sorry about the problem you're having and I hope the doppler helps point you in the right direction.
I assume there will be several twists and turns in this treatment over the next few years. There is still a lot to learn.
Be well,
Rhonda
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby gibbledygook » Tue Jun 15, 2010 8:09 am

Hi Marie!

Well, this gives you the possibility of further improvement if they can locate reflux and do the venogram. I very much hope that they are able to do so.
You want to have both jugulars flowing well!

Very best of luck!

Alex
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Tue Jun 15, 2010 9:39 am

CureOrBust wrote:I think it will be MANY MANY years before any one of us receives the fully "correct" treatment. How many years have they been doing heart transplants? have they got that "right" yet? Lets not event mention how many years they have been "treating" MS....


That was the exact thing Dr. Cooke said to me at Stanford, Cure. He even pointed to the portrait of Dr. Norman Shumway on the wall while we discussed this. Marie's right. We're at the beginning--he said 10 years time, the Mayo Clinic will have it down. Marie and I have gone over this....Jeff has the same issue with his scrawny left jugular. It's just not working. His right side is wonderful, and he's maintaining his energy and stability, but he's got headaches and ear whoosh still, and a lousy left jug. Is there something lower clogging the works? We just don't know. He needs a doppler or internal US. His radiology report came over the weekend...he also has a rather significant Thornwaldt cyst in his nasopharynx. He's seeing the ENT to look into that--might be implicated in headaches. I agree with Marie--this is partial treatment. And I love Dr. Dake---but he's a human being.

If I knew then what I know now, would I have written about all this all online. Nope. No way. But it's too late to take it back.

Marie--I'll say it publicly (I hope you already know it privately) I admire your commitment to discovering the truth about this disease. You are such an admirable woman on so many different levels. I wish for nothing more than healing and stability for you. Hang in there. The fat lady has not sung yet :wink:
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Tue Jun 15, 2010 10:03 am

Not to hijack the thread, but I've had a return of headaches in the last month or two but had written it off to allergies, viruses, change of weather, etc. I am now wondering if my high stenosis has a nemesis down below? Believe me I am still doing really well, but this has become a drag.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Lyon » Tue Jun 15, 2010 11:55 am

.
Last edited by Lyon on Sun Nov 20, 2011 7:23 pm, edited 1 time in total.
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Postby mrhodes40 » Tue Jun 15, 2010 1:38 pm

CureOrBust wrote:
I think it will be MANY MANY years before any one of us receives the fully "correct" treatment. How many years have they been doing heart transplants? have they got that "right" yet? Lets not event mention how many years they have been "treating" MS.....


right on. On average people will not get to an EDSS 6 until 20+ years. at 15 years only 30% use an assistive device. The fact is that you can take CRABS or whatever for a long time and think they work great...until you become progressive. If you are like me then you feel betrayed, I was told over and over again how GREAT I was doing. MRI's GREAT! like a newly diagnosed person! You are lucky! until the day I fell off the disability cliff then the story magically changed to "well if we'd started treatment sooner..."

What? sooner than when I could still jog 3 days a week? the month the drug came out? I was on rheumatoid meds before I even got MS. How can you start sooner than that?

BTW my rheumatoid is well controlled and I have no joint damage. I only take cop for that now.

Something is rotten in Denmark. I have been in the degenerative not autoimmune camp since '04

I agree about the heart transplants too.

Cheer, though it's been painful on many levels going through this process over the last year I am thankful I had an opportunity to be treated.
I am sorry for all the pain this has caused you personally.


I hope the day comes when you can look back and feel sanguine about it...


I agree with Marie--this is partial treatment. And I love Dr. Dake---but he's a human being.


Oh boy me too. I am grateful beyond believe that I have blood flow on one side. There's no question at all that it has helped me. However, I have studied this extensively and I am absolutely convinced that both jugulars need to be functioning well for a healthy brain.

Well, this gives you the possibility of further improvement if they can locate reflux and do the venogram. I very much hope that they are able to do so.
You want to have both jugulars flowing well!


I agree Alex I don't see it as a bad thing I know more than I did before! In my mind I'm just grateful that this has come out at this point in time. I believe that this is the answer it's been a year I'm not experiencing placebo effects.

Did you have that baby yet?
I of course cannot speak for mrhodes40, but I have read of a number of people with stents have had to have their stented areas re-ballooned. This may aggravate the nerve issue in mrhodes40, and may require further Coumadin treatment also


Well yes of course. Thanks Cure.

Rhonda thank you for the good thought as well. i hope your headache finds a cure.

Thanks Beth also.
I will keep you all posted...I look forward to everyone elses results as they go for one year check ups too :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureOrBust » Tue Jun 15, 2010 4:15 pm

Marie, I know you are following the thread, but it moves fast. This post by Dr Sclafani is quite interesting for those thinking of further treatment, or even first treatment.
http://www.thisisms.com/ftopicp-117550.html#117550
DrSclafani wrote:So now i will do all my catheterization from the left femoral approach, even though I dont like to.
Which side did Dr Dake enter from on yourself?
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Postby mrhodes40 » Wed Jun 16, 2010 9:05 am

Definitely the right. thanks for the link CUre!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Wed Jul 21, 2010 12:29 pm

Well well well.

The local MS neuro has gotten to my second opinion guy in the meantime. He is apparently going around to local vascular guys and giving inservice education.

Now my second opinion guys knows all about this "CCSVI nonsense" direct from our resident NMSS expert. He begged me to understand the politics of the situation. That he'd like to help but really he is in an awkward position. One of the partners is going in full for the neuro point of view.

He also said he went over Menegatti and Zamboni paper describing the dopplers and said that he realizes now he can't do the dopplers . He said they were looking at things so subtle that he would need to do the dopplers every day for a couple months to reliably detect what they were using as important signs of reflux in the deep veins (Note this is a neuroradiologist he does dopplers for strokes....this speaks to how hard this is....)

He offered that as a favor to help me--if I really pushed him--he would do a venogram on the q.t. if I paid out of pocket. however, I am out of the guinea pig market. I am not going to be someone's "Under duress, pressed to do it but don't believe it" first patient.

I don't want some back alley abortion treatment. I want someone up front.

Anyway that is the final chapter of the second opinion guy. He never even looked at my venograms after all; he was supposed to call after he did that and give me at least a second opinion of my treatment for my own edification, so I had something of value for my effort and visits. Never called. :evil:

Other centers are opening up, other treatment will be available soon I believe. I am interested in the Haacke centers of excellence and may pursue evaluation there

http://www.hubbardfoundation.org/multip ... _fmri.html

I am not out of hope just annoyed. Is my one jug good enough or not? I suspect not. But I want to know: is my blood flow adequate with the right being the only open vein? If it is true that my brain is suffering under low oxygen I want a further evaluation with venogram....

EDIT: I have gotten a pm about this post and want to be clear that I have no knowledge of the local MS expert physician doing any activities to inform local vascular doctors in any official NMSS capacity. He may be very well just doing this on his own or only in response to questions from local docs being asked to treat CCSVI. I do not know nor do I know if he has spoken to more than the 2 offices I know were educated on this... I made a leap from these 2 offices to his doing it in others as well. Please forgive me. I was distraught.

I do know that Jack Burks is holding fair discussions of CCSVI that are cautiously optimistic when he does inservice education on MS for neurologists. In other words, he is there to talk about Tysabri and CRABs etc and he also has a discussion prepared if the docs want it on CCSVI. He is the chief medical officer of the Multiple Sclerosis Association of America. :D :D :D

Things are moving
Last edited by mrhodes40 on Fri Jul 23, 2010 12:56 pm, edited 2 times in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CRHInv » Wed Jul 21, 2010 5:20 pm

I am not out of hope just annoyed


This is annoying! I am annoyed too. I am glad you didn't want to go for the venogram. I wouldn't do that either. I was really looking forward to hearing what they had to say, so this is disappointing.

Hang in there and take care!
Beth
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.
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Postby LauraV » Wed Aug 18, 2010 3:04 pm

You're all right. We are ALL on a steep learning curve here, ESPECIALLY the doctors who want to help us. It's frustrating because the vascular docs and IRs need the experience to fine tune their techniques and treatment regimens but if they aren't allowed to practice, how can they do this? And how can double blind studies be done on techniques if there is no standard technique?

And cheerleader, I wouldn't feel bad about anything. You have generated many discussions that needed to happen and will need to happen for a while. And we shouldn't be focused on having the one perfect liberation procedure. Maybe more than one is necessary or breaking a procedure down into separate parts, maybe jugulars during session one and azygous and lumbar veins during session two. I think it is going to become apparent that some people can be helped with one procedure and others with different procedures or repeated procedures. It may turn out to be that we need a venogram every "x" number of years, like a mammogram or a colonoscopy. It might and hopefully will be part of the regular treatment that all PwMS get.

The frustrating if not sickening part of this CCSVI movement is the narrow mindedness of doctors in the MS industry and their resistance to open inquiry and unbiased legitimate research. It's outrageous. It sounds like the plot of a bad movie. You can't make up this stuff. And how can they get away with this? What is wrong here?

I apologize for my venting.
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