Caution.....
Posted: Sat May 09, 2009 8:37 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.
When I am here, I am a patient first
I just felt the need to clarify who and what I am in this situation;
my excitement outstrips the research to date
But it is understandable I hope as I explain it here
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.
When I am here, I am a patient first
I just felt the need to clarify who and what I am in this situation;
my excitement outstrips the research to date
But it is understandable I hope as I explain it here
