Caution.....

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

Caution.....

Postby mrhodes40 » Sat May 09, 2009 9:37 am

I am so excited by this CCSVI model I feel like it is time for a reality check:

It is important to remember that we, including all of us and me and Cheer, are not experts, but people whove been hurt by MS. It is also true that Dr Zamboni is cautious about his work and the findings so far. He is building his case step by step

First he offered the hypothesis
next he did dopplers on 60MSers and 89 controls--all MSers had issues
next he did dopplers on 109MSers and 177 controls--all MSers had venous issues again
Finally in Dec '08 his paper on 65 MSers who again all showed the doppler abnormalities so he was finally allowed to do actual venograms to see IF these doppler abnormalities were related to physical stenoses. They all were.

All of that was peer reviewed work.

In January, another 100 MSers were assessed then treated for those stenoses with the Liberation procedure. This means they all had some treatable stenosis which is exciting to me. But the results of this are not known: will it help MS or not? We'll know in a year.

Replication is starting back at the beginning: Dr Simka's work showing that all MSers in his small group had doppler evidence of venous abnormality, including 3 probable MSers.

He has not yet done a study showing stenoses in all MSers via venograms, but I understand that research is going forward with review by the ethics board to see if they agree he can go ahead and do something invasive like that with patients/study subjects based on work done so far.

Dr Dake has decided that if people have headaches they can be evaluated for such blockages now based on that pathology, NOT MS. He will treat people based on their individual issues/stenoses presented at the time of evaluation. Potentially some of us would not present with something treatable, for example too small a stenosis or no stenosis at all.

Endovascular surgery is surgery and needs to be appreciated for that; it is invasive and carries some risk, which is why the universities have waited for so much evidence before they allowed such treatments to be done experimentally for MS patients. Again it is not known yet if it will help MS symptoms. The little bit we do know from Wobbly, one of the liberation 100, Jeff who was treated by Dr Dake, and the comment Zamaboni made is that it helps, but that's all anecdotal.

This work is super interesting, and I personally am very excited about it because I am out of options. I am really glad to have a way to offer myself as a lab rat for this work because I tried to go to JH for revimmune a year ago--no dice cause I have no inflammation, I can't actually take anything like Tysabri for the same reason.

If I had another option I would do it and wait to see what happens with this research. But I don't, so you see me offering myself for evaluation of my headaches to see if I too have a significant stenosis as my dopplers seem to indicate, and I am as excited as anyone who has been offered a new open door when they had come to the end can be; I can't help it.

But I want to be sure that people understand that no matter how much we talk about it here, that is not equivalent to actual research being done and accepted. All the speculation and understanding we can do here in TIMS is not a substitute for good complete research, and it should not substitute for medical advice.

My primary care doctor, who is also my friend, is very excited by this new idea and would even go with me to Stanford. I saw her and hre partner this week and we discussed it at length. She sees the model as very interesting and plausible, but she expects some further information to come out along the research path. She has not discouraged me at all however, and we both agree that Dr Dake is someone I can consult with confidence in his medical opinion. She did labs this week for me and will follow up with labs if I end up getting a procedure and repairs of some stenosis and am on anticoagulation meds. In my personal medical world, the whole team is a go with this.

I just wanted to make sure that it is all clear that when I am here I am glad to use my background as a nurse to help clarify some things about physiology as I understand its relation to this model for interested people, but I am not telling anyone what is best for them, I do not have the background for that and the research is not done. 8O

When I am here, I am a patient first :wink:

I just felt the need to clarify who and what I am in this situation;
my excitement outstrips the research to date :oops:

But it is understandable I hope as I explain it here :?:
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Postby Loobie » Sat May 09, 2009 11:03 am

Marie,

What you are is awesome. I think you have the 'giver's mentality' to qualify your exuberance so that it doesn't get misconstrued as fact. I think all of us are semi in the same boat in terms of feeling like we don't have too many choices. I am still obviously functioning enough to work a full time job. However, I am right at the precipice where if I get fatigued any easier, or get dizzy any easier, or almost any of my main symptoms change even 1%, it will be more load than I can handle and still manage a good, full time job. I actually do think Tysabri is responsible for stopping the constant progression I was experiencing. However, I'm not satisfied that it's just going to keep working for the next, lets' say, 10 years. So I guess I could say I have something that's working for me, but I'm still not satisfied. It's always bothered me when I watch the DVD where they say something to the effect of "we are not entirely sure why this works". That's not verbatim at all, but that was the gist. So since I can't do the interferons and Tovaxin sucks, all I have left to try that's FDA approved is Copaxone. And while that may work well for me for a while, it's not like it's efficacy is any higher percentage wise than interferons. So I'm pumped about this too, but unashamedly since I am firmly convinced that even if I'm chasing windmills, I still find hope in that and it keeps me going.

I put in a post my take on hope and excitement and how I've decided that it is necessary in my case. My psyche has always been optomisitic. So when I don't have a single thing to look forward to, experimental or not, I just don't do too well and I actually start to feel worse physically because of my crappy outlook. Just know that your contribution to all of this is incredible. As someone else said "you have the gift", or something like that, about putting stuff us laypeople almost get, into verbiage that makes total sense. Not everyone can do that. I, for one, really appreciate that. It parlays in to you catching things that people misconstrue and things of that nature because you truly understand it. I read someone's slightly incorrect take on something and I'm like "yeah, cool!", but you always can say "that's not exactly right, but here's what I think you mean". That's awesome to me and I just love the fact that you are interested in this. I usually will start to read a paper and then I think "I'll just wait until Marie reads it and posts what it's about". That is priceless.

So to sum up my rambling, this wasn't a reality check since, for me anyway, if this doesn't turn out to be everything we think it is it will simply be time for "next". So for me the reality check is great and I hope you stay excited because I hope this stuff works!
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Postby mrhodes40 » Sat May 09, 2009 12:30 pm

Gosh thanks Lew! It feels good to be understood, awesome is overly generous assessment I'm thinking though :oops:

But I think this research is very awesome and I am really appreciative of Dr Zamboni and the team, Dr Simka, and Dr Dake for stepping into this with all they have. I like the idea of "helping" by being part of grass roots movement to get this evaluated at a number of centers so the work can go forward.

Because this is not just another kind of immune reboot but a totally different paradigm, one with no commercial champions BTW, it it vastly more important from the MS patient perspective that this work go forward and be accepted or rejected soon.

The possibility exists for this to be the "IT" of MS and for it to languish for something like 10 years; 10 years of people taking drugs with toxicity that is potentially life ending for some patients. Because of that the need for this to get understood is urgent IMHO.

I really relate to this comment
symptoms change even 1%, it will be more load than I can handle

and
My psyche has always been optomisitic. So when I don't have a single thing to look forward to, experimental or not, I just don't do too well and I actually start to feel worse physically because of my crappy outlook.


I am exactly in the same place with both points: dead on. I personally have stem cells in my back pocket too :wink: but I have much more hope for this...it makes so much sense and in my case already having screwy dopplers really "sealed it" in my mind.

Honest: I was on that guerney in the darkened room and thing after thing was normal--jugs etc--then near the end, "Oh wait....we do have reflux, it's in the vertebral veins.....huh..." I swear to you it felt to me like the earth physically shifted about 2 inches and I landed in a different world. 8O

thank you for your kind words lew! I think you are a really awesomely generous person too!
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 skydog » Sat May 09, 2009 12:55 pm

Marie, Loobie You bring to light the reality of where we are at at this time. One more step will be taken with the hope of favorable results. Hope everyone gets as much out of your posts as I do. What a long strange trip its been. I truly feel that everyone here on ThisIsMS gains so much from the information we all continually bring. Keep up the great posts. Forever thankful for finding home here. Peace Mark
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Postby mrhodes40 » Sat May 09, 2009 1:47 pm

Thank you Mark. :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 peekaboo » Sat May 09, 2009 1:58 pm

ditto to all comments made above marie....how about this statement...re:caution

I am an adult and am fully aware of my actions therefore i take full responsibility for my actions. to CCSVI or not :)
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Postby mrhodes40 » Sat May 09, 2009 2:38 pm

Now yer talkin' PKboo! thank you :D

Nurses have a prime directive: Patient advocacy and patient teaching. Nurses are to be on the side of the patient's best interest no matter if you have to stand up to a doctor or the hospital to do it. But at the same time we have no right to diagnose or make the patient's decisions. I am so gung ho for myself and so anxious to share information about CCSVI I was not sure I was on the line or not, but you put my heart at rest. :wink:
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 cheerleader » Sat May 09, 2009 3:07 pm

Thanks for this, Marie. I so agree...
it's very important that everyone understand we can't/shouldn't endorse this protocol for every MS patient without limits. There's much that goes into the decision for treatment, and every treatment has inherent risk. As "gung ho" as someone might be for any treatment, whether tysabri, immune ablation or stenting...it takes alot of time and discussion with your doctors and loved ones to decide what it best for you and your particular case. Jeff and I will be honest in reporting how he does with his new stents in the days, weeks, months ahead. Read the reports in the regimen section-

I'm sure everyone reading this forum knows all of this, but it bears repeating. As a "medical person" and someone who walks the walk and talks the talk, it was good of Marie to remind us all.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Loobie » Sun May 10, 2009 4:16 am

Yes it is good to have that attitude. Basically I think Marie is trying to say go in 8O with both eyes open AND with realistic expectations: read; we don't' know what to expect yet!

And BTW, HAPPY MOTHERS DAY to all moms on here!!
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Postby mrhodes40 » Sun May 10, 2009 7:22 am

Yes, thanks Lew. :D :? 8O :D :D :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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Re: Caution.....

Postby kuruc » Mon Feb 08, 2010 11:27 am

Can you tell me why Dr. Dake was treating you for headache and "NOT MS"? Was it hard to get in to see him? Did your insurance cover the treatment? Do you know of anyone else besides Dr. Dake that would be willing to do the treatment? Thanks. I have friends that are ready to pay for immediate treatment and they are pestering me but my Polish doctors are booked into 2011.
mrhodes40 wrote:I am so excited by this CCSVI model I feel like it is time for a reality check:

It is important to remember that we, including all of us and me and Cheer, are not experts, but people whove been hurt by MS. It is also true that Dr Zamboni is cautious about his work and the findings so far. He is building his case step by step

First he offered the hypothesis
next he did dopplers on 60MSers and 89 controls--all MSers had issues
next he did dopplers on 109MSers and 177 controls--all MSers had venous issues again
Finally in Dec '08 his paper on 65 MSers who again all showed the doppler abnormalities so he was finally allowed to do actual venograms to see IF these doppler abnormalities were related to physical stenoses. They all were.

All of that was peer reviewed work.

In January, another 100 MSers were assessed then treated for those stenoses with the Liberation procedure. This means they all had some treatable stenosis which is exciting to me. But the results of this are not known: will it help MS or not? We'll know in a year.

Replication is starting back at the beginning: Dr Simka's work showing that all MSers in his small group had doppler evidence of venous abnormality, including 3 probable MSers.

He has not yet done a study showing stenoses in all MSers via venograms, but I understand that research is going forward with review by the ethics board to see if they agree he can go ahead and do something invasive like that with patients/study subjects based on work done so far.

Dr Dake has decided that if people have headaches they can be evaluated for such blockages now based on that pathology, NOT MS. He will treat people based on their individual issues/stenoses presented at the time of evaluation. Potentially some of us would not present with something treatable, for example too small a stenosis or no stenosis at all.

Endovascular surgery is surgery and needs to be appreciated for that; it is invasive and carries some risk, which is why the universities have waited for so much evidence before they allowed such treatments to be done experimentally for MS patients. Again it is not known yet if it will help MS symptoms. The little bit we do know from Wobbly, one of the liberation 100, Jeff who was treated by Dr Dake, and the comment Zamaboni made is that it helps, but that's all anecdotal.

This work is super interesting, and I personally am very excited about it because I am out of options. I am really glad to have a way to offer myself as a lab rat for this work because I tried to go to JH for revimmune a year ago--no dice cause I have no inflammation, I can't actually take anything like Tysabri for the same reason.

If I had another option I would do it and wait to see what happens with this research. But I don't, so you see me offering myself for evaluation of my headaches to see if I too have a significant stenosis as my dopplers seem to indicate, and I am as excited as anyone who has been offered a new open door when they had come to the end can be; I can't help it.

But I want to be sure that people understand that no matter how much we talk about it here, that is not equivalent to actual research being done and accepted. All the speculation and understanding we can do here in TIMS is not a substitute for good complete research, and it should not substitute for medical advice.

My primary care doctor, who is also my friend, is very excited by this new idea and would even go with me to Stanford. I saw her and hre partner this week and we discussed it at length. She sees the model as very interesting and plausible, but she expects some further information to come out along the research path. She has not discouraged me at all however, and we both agree that Dr Dake is someone I can consult with confidence in his medical opinion. She did labs this week for me and will follow up with labs if I end up getting a procedure and repairs of some stenosis and am on anticoagulation meds. In my personal medical world, the whole team is a go with this.

I just wanted to make sure that it is all clear that when I am here I am glad to use my background as a nurse to help clarify some things about physiology as I understand its relation to this model for interested people, but I am not telling anyone what is best for them, I do not have the background for that and the research is not done. 8O

When I am here, I am a patient first :wink:

I just felt the need to clarify who and what I am in this situation;
my excitement outstrips the research to date :oops:

But it is understandable I hope as I explain it here :?:
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Re: Caution.....

Postby Cece » Mon Feb 08, 2010 12:30 pm

kuruc wrote:Can you tell me why Dr. Dake was treating you for headache and "NOT MS"? Was it hard to get in to see him? Did your insurance cover the treatment? Do you know of anyone else besides Dr. Dake that would be willing to do the treatment? Thanks. I have friends that are ready to pay for immediate treatment and they are pestering me but my Polish doctors are booked into 2011.


Try Dr. Mehta. If you do a site search on Mehta you should turn up the information. He's a doctor in Albany NY who is taking names for a treatment (angioplasty) trial to begin next month.

The reason for headache and not m.s. is because the m.s. connection is preliminary and not insurance coverable. Headaches can be an insurable reason to get imaging and then when stenosis is found, stenosis is its own reason for further treatment.

Best of luck. You have good friends.
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Postby greenandchic » Mon Feb 08, 2010 12:36 pm

Thank you for bringing me back down to earth. Since I was diagnosed a year ago, I have decided to take a "controversial route" in dealing with MS. Since I learned about all of this a few months ago, I decided to put all my energy into this.

I sill have to keep an open mind and be prepared for anything.
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Postby nacho » Tue Feb 09, 2010 12:03 pm

I really don't understand why there is so much said about the risk associated with CCSVI. Has anyone taken a look at the new treatments in the pipeline for MS. Chemotherapy, drugs that completely screw up your immune system making you susceptable to cancers. Tysabri has PML. It seems that if you come down with PML you might as well stick your head between your legs and kiss your ass goodbye. All of the drugs on the market today are geared towards knocking out your immune system. Well if CCSVI is correct then your immune system is doing what it is supposed to be doing in the first place. All this time the drug companies and nuerologists were trying to fight a system! Not the disease. What a joke. The human body is a highly complex organism and it will always try to be in a state of homeostatis. If something is wrong the body will naturally try to fix itself.

Me for one will be treated for CCSVI as soon as I can. To hell with the risks. My life today sucks with MS.
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Postby greenandchic » Tue Feb 09, 2010 12:10 pm

Nacho,

I think the point is, we shouldn't go into this with our eyes shut. We should know what possible risks are.

On the other hand, I totally agree with you!
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