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

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

Postby patientx » Tue Dec 08, 2009 12:45 pm

I have raised just that problem with the broken leg analogy. Like you wrote, surgery generally isn't required for a broken leg. But beyond that, if I break my leg, I can't walk, regardless of my MS. If I have clogged jugular veins, I can still function.
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Postby coach » Tue Dec 08, 2009 1:34 pm

Don't know if this will answer any questions that some may have or not. Haven't been able to read much about this, but my husband did e-mail Dr. Dake. So I am posting both here. I for one certainly appreciate the efforts of the good Doctor. I think it would be wise to guard against speculation and finger pointing. We are all adults here and have to take responsibility for our decisions and choices. We don't live in a risk free world. My decision was based on quality of life and I was okay with the possibilty of death . As a Christian I must remember O death where is thy sting, O grave where is thy victory? 1 Corinthians 15:55

The e-mail and Dr Dake's response is as follows:

Dr. Dake,
I know you are inundated with e-mails but we heard (read) the disturbing news that all procedures have been stopped seemingly out-of-the-blue. We knew that this would occur at some point prior to the clinical trials, but the “seemingly out-of-the-blue” action raises the possibility that a major complication has occurred in one or more patients. Many CCSVI patients were obviously aware of the one situation where a stent actually moved to the heart, but I am still stunned by that revelation as it is new to me today and wondering if there are other serious issues. Also wondering if a fall or other jarring of the body could increase the risk of a stent moving and should one therefore limit one’s activities until the stents have had time to “settle in” so to speak. My wife feels great and is trying to do too much in my opinion already, and now this really concerns me as her walking has not improved much if at all.
This procedure has such great potential and the patients that have already had it done need to take every precaution possible to make their results positive. I am sure that the drug companies and possibly some neurologists will point to any problem to stop this procedure.
This probably also explains why we have not heard from Alex yet about a return visit as I know she is swamped trying to cancel everyone scheduled for the procedure. This brings us to the obvious question, will you continue to see my wife in January as planned? We do not need to buy airline tickets if you are unable to see her and treat what you find if something is a problem. What is the status of those who have already had the CCSVI procedure from this point forward?
I am not one to give you advice, but here goes. If at all possible, it would be a great help for our (all CCSVI patients and loved ones) nerves and hopes if you e-mailed (or posted on ThisIsMS) an explanation of the immediate stopping of all procedures and a synopsis of the successes and problems to-date. Something needs to be done to stop the speculation and fears swirling in the CCSVI Forum on ThisIsMS

Dr. Dake’s response is as follows:

Please be assured there is nothing to worry about in terms of stent migration as far as your wife is concerned--I am completely confident of this. There are no other complications besides our one stent migrtion two weeks ago. Obviously, we will certainly be pleased to see your wife for follow-up. One reason you haven't heard from Alex is because of the 630-odd emails we have received in the last 12 days from patients, family members, physicians, physician/patients, etc., inquiring about how to receive evaluation and possible treatment. Indeed, I have decided to suspend further therapies until we can secure the appropriate infrastructure to deal with the staggering number of requests, including the approval of a protocol which is the natural progression of scientific investigtion to follow our initial open label observational phase. This will insure that the next phase of study is taken seriously by a wider medical community as a formal protocol will dictate specified patient enrollment criteria, pre procedure testing and post procedure analysis with specified clinical, imaging and quality of life endpoints. I firmly support this approach as the most appropriate next step in our process of understanding what role this therapy should play in the overall management of patients with MS. The current wave of interest and the obvious resultant democratization of endovascular procedures will soon find local/regional hospitals offering the procedure. Now is the time when it is most important to establish the scientific merit, if any, before this becomes a widespread practice. It is my hope that our trial will contribute to our understanding and help others know any benefits and limitations. This is a voluntary decision and although there is high skepticism by many neurologists regarding any merit of endovascular therapy of extracranial venous obstruction, I was not forced by anyone to suspend procedures. Rather, it is the recognition that we have now accumulated enough clinical experience to understand how to create the appropriate protocol for a rigorous scientific study. Please feel to share these comments with any friends or forum readers, as you feel they may prove explanatory or helpful.
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Postby MrSuccess » Tue Dec 08, 2009 1:44 pm

Good work Coach .

Let the Clinical trials begin.












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Postby prof8 » Tue Dec 08, 2009 1:44 pm

Okay, thanks for sharing that communication with Dr. Dake. What he says makes a lot of sense. Although I have to say that stopping the procedures 1 day before I was supposed to leave for Stanford, and 2 days before my appointment kind of sucks! It would have been nice to be grandfathered in, at least the people lined up for this week might have been permitted to be treated. Just my thoughts. But I know at some point you have to draw the line. I was hoping I was one of the last to cross the line.
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Postby whyRwehere » Tue Dec 08, 2009 1:47 pm

patientx wrote:Scut,

Very well written. I have raised just that problem with the broken leg analogy. Like you wrote, surgery generally isn't required for a broken leg. But beyond that, if I break my leg, I can't walk, regardless of my MS. If I have clogged jugular veins, I can still function.


patientx, you are lucky to still function even though you have MS. My husband functions less and less. He can't pee and he practically can't walk. I don't consider that functioning and at the same time I know for fact that he has blockages and missing veins. When a doctor says, "oh, that doesn't really have any effect on a person," I think that doctor is so wrong!
So, I agree with the analogy.
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Postby jay123 » Tue Dec 08, 2009 1:56 pm

Yes, I think the good doctor (and I mean that sincerely) was being very politically correct in his email about stopping, especially in light of the email from the MS head who was gloating over stopping Dr. D.
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Postby mormiles » Tue Dec 08, 2009 2:28 pm

Scut, My husband's doctor who wrote the prescription for imaging to determine if he had CCSVI said that, whether it's related to MS or not, if someone has that condition, it should be corrected in order prevent neurological difficulties.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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That's not a consensus opinion

Postby ScutFarkus » Tue Dec 08, 2009 2:47 pm

mormiles wrote:Scut, My husband's doctor who wrote the prescription for imaging to determine if he had CCSVI said that, whether it's related to MS or not, if someone has that condition, it should be corrected in order prevent neurological difficulties.


Did your husband's doctor clarify whether his statement was his personal opinion, or if it reflected current best-practices in the medical profession? Doctors aren't always correct, nor do they always stick to scientifically-based medicine, which is why it's common and generally recommended to get second opinions about things as serious as surgery. Years ago, my doctor assured me the suspicious mole on my chest was nothing to worry about, because people with lots of moles are at low risk for cancer (!!). I got a second opinion from a dermatologist, and it saved my life: the "mole" was actually stage 2 melanoma, which we thankfully removed before it had spread.

I guarantee you can find many doctors who don't share your husband's doctor's opinion. Check posts from others in this forum for their frequent reports. My original mole-ignoring doctor was also ignoring medical consensus with his advice.

I would love to see clinical proof that treating venous blockage is beneficial regardless of MS. Better yet, long-term efficacy data for all those non-MS people who have been treated. Is there such proof or data? Please post links to it, if so! But I think that if this were a widely accepted and/or scientifically justified position, we wouldn't be having this discussion.

/Scut
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Postby Loobie » Tue Dec 08, 2009 3:13 pm

Scut,

Just Google it. It can cause problems all over the body. You'll get a lot of hits describing CVI, or the most common area of the legs, but you can also read about the importance of draining the organs properly. I, for one, extrapolated that to my brain and thought if it's important for there not to be CVI around my liver or in my legs, then my brain should be properly drained also. Hypoxia, hyperperfusion, iron deposition, none of this stuff that occurs is good for the system that is supposed to be drained; let alone that delicate brain tissue.
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Postby Shannon » Tue Dec 08, 2009 3:25 pm

Living life with a broken legs means one cannot walk. Living life with MS means that one cannot live. I did not like the analogy about still being able to function with MS. For many, that is really under debate.

The injury caused by the blocked veins could probably be the same, whether you want to call it MS or something else. I also do not agree that someone without MS having the same blockages would not need treatment. I believe that something would be going wrong neurologically.
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Postby Lyon » Tue Dec 08, 2009 3:37 pm

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Postby patientx » Tue Dec 08, 2009 3:57 pm

Shannon wrote:Living life with a broken legs means one cannot walk. Living life with MS means that one cannot live. I did not like the analogy about still being able to function with MS. For many, that is really under debate.


Twist the analogy any way you wish.

The injury caused by the blocked veins could probably be the same, whether you want to call it MS or something else. I also do not agree that someone without MS having the same blockages would not need treatment. I believe that something would be going wrong neurologically.


The key word there being "believe."
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Postby Sharon » Tue Dec 08, 2009 3:58 pm

Lyon wrote
We've all read that Sharon's daughter hadn't been diagnosed with MS but was treated for stenosis.


This is correct - to add: my daughter did have "sprinkles" of lesions which were indicative of MS. Dr. Dake tested both of my daughters - one had stenosis, the other did not.

Thanks Coach for connecting with Dr. D. and asking him to respond with an email that could be shared on the forum. I hope this stops some of the speculation. I hope that at some point in time, everyone gets a chance to meet and have a conversation with Dr. D. --

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Postby ScutFarkus » Tue Dec 08, 2009 4:19 pm

patientx wrote:
Shannon wrote:The injury caused by the blocked veins could probably be the same, whether you want to call it MS or something else. I also do not agree that someone without MS having the same blockages would not need treatment. I believe that something would be going wrong neurologically.


The key word there being "believe."


Exactly. The important difference isn't the seriousness of the illness. The difference is that for broken legs, we have a strong, scientific understanding of treatments and outcomes. For blocked veins (with or without MS), we do not.

loobie wrote:I, for one, extrapolated that to my brain


There again lies the rub: extrapolation may help guide research, but it's no substitute for scientific proof, clinical trials, etc.

/Scut
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Postby CureIous » Tue Dec 08, 2009 4:54 pm

Sounds more like the Stanford email "knew" it would be leaked. They aint dumb. What more than likely happened, is they used the 1 incident as an excuse to "impose a ban" on something that they knew was going to be stopped anyways to shift over to a proper trial. So Dr. D just takes the names off one list and puts them on another.

Just noise, like I said. The equivalent of a cheap shot across the bow...

Thanks for doing that Coach, when something comes up later we'll just point to your email.

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
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