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Blood Reflux To Brain Cause For M.S. - Called CCSVI ???
Has anyone ever heard of this?
A doctor Paolo Zamboniis from Northern Italy had a wife dx with MS a decade ago and started his own research. Amazing how motivating it can be when it hits your own family.
Long story short his study showed that almost 100% of "his" patients had a narrowing twisting or blockage of the veins that are supposed to flush blood from the brain. Not only was the blood not flowing out of the brain it was refluxing and flowing back upwards forcing blood in to the brains gray matter where it sets off a host of reactions "possibly explaining the symptoms of MS
The doctor named the vein disorder CCSVI or Chronic Cerebrospinal Venous Insufficiency.
One of the patients lives less than 2 hours from me and had a procedure done 10 months ago to correct his blockage and hasn't had an episode since.
I know there are all kinds of theories out there but I am going to research this because a trial is starting in my area and I am thinking of begging to get in.
Just putting it out there in case anyone is looking for new treatments or is feeling as beaten down as I am these days.
Erin :)
A doctor Paolo Zamboniis from Northern Italy had a wife dx with MS a decade ago and started his own research. Amazing how motivating it can be when it hits your own family.
Long story short his study showed that almost 100% of "his" patients had a narrowing twisting or blockage of the veins that are supposed to flush blood from the brain. Not only was the blood not flowing out of the brain it was refluxing and flowing back upwards forcing blood in to the brains gray matter where it sets off a host of reactions "possibly explaining the symptoms of MS
The doctor named the vein disorder CCSVI or Chronic Cerebrospinal Venous Insufficiency.
One of the patients lives less than 2 hours from me and had a procedure done 10 months ago to correct his blockage and hasn't had an episode since.
I know there are all kinds of theories out there but I am going to research this because a trial is starting in my area and I am thinking of begging to get in.
Just putting it out there in case anyone is looking for new treatments or is feeling as beaten down as I am these days.
Erin :)
Sho,
Thanks for the reminder about your treatment and the link to check it out.
I am interested for sure and hope that you are doing well
Hugs,
Erin :)
Thanks for the reminder about your treatment and the link to check it out.
I am interested for sure and hope that you are doing well
Hugs,
Erin :)
Yes, there are a lot of intriguing theories about CCSVI and the Buffalo research seems promising. I think we are all eagerly anticipating the release of fuller data from Buffalo in April that will hopefully clear up some of these questions about percentages and what they mean.
If you or anyone is interested in my experiences being treated for CCSVI at Stanford, I have attempted to record them in my journal at http://www.medhelp.org/user_journals/list/333672
sho
If you or anyone is interested in my experiences being treated for CCSVI at Stanford, I have attempted to record them in my journal at http://www.medhelp.org/user_journals/list/333672
sho
Meg,
I would love to be in the study but there is sooo much interest that it would be like winning the lottery, lol.
I really believe that I would benefit from the surgery but I will have to wait to find out. It seems as though we are always waiting doesn't it!
I see my MS doc at Cleveland Clinic in March too so I will see what she has to say. I do know that my insurance won't cover these very expensive tests even if the doctor refers me because they are still not approved.
Good luck at your March appt. We will have to compare notes.
Hugs,
Erin :)
I would love to be in the study but there is sooo much interest that it would be like winning the lottery, lol.
I really believe that I would benefit from the surgery but I will have to wait to find out. It seems as though we are always waiting doesn't it!
I see my MS doc at Cleveland Clinic in March too so I will see what she has to say. I do know that my insurance won't cover these very expensive tests even if the doctor refers me because they are still not approved.
Good luck at your March appt. We will have to compare notes.
Hugs,
Erin :)
This has been very exciting for awhile now..it could help so many people. I heard about it a few months ago from a friend who had a friend with MS and he had the surgery at Stanford and it totally helped him. Then the buzz started on here and it made it more real to me.
I just wondered if we still need to do the research, but they are still able to do the surgery in some places like Stanford. My mind may be confused because something says i already know the answer, but I dont. LOL..its so weird..
I will see my MS doc at UCSF in March and I will see what she says about it.
Good luck, i hope you can get into the study and we can hear from you first hand.
hugs, meg
I just wondered if we still need to do the research, but they are still able to do the surgery in some places like Stanford. My mind may be confused because something says i already know the answer, but I dont. LOL..its so weird..
I will see my MS doc at UCSF in March and I will see what she says about it.
Good luck, i hope you can get into the study and we can hear from you first hand.
hugs, meg
Hello & Welcome :)
There has been quite a buzz with this new study. It's hard not to be excited when something new comes out.
I applied to be part of the study along with thousands of others I'm sure but was not selected. They are doing another study but I haven't heard so I guess I got passed over for that one too.
I found out that you can make arrangements to have these tests done yourself in Buffalo but as of now insurance companies won't pay. The cost is from $4,500 to $8,000 out of pocket. WOW!
As much as I would love to know if I am a candidate for the procedure I couldn't afford that in my wildest dreams. So I will keep on with the DMD's and IV steroids and wait.
Good luck to you
Erin :)
There has been quite a buzz with this new study. It's hard not to be excited when something new comes out.
I applied to be part of the study along with thousands of others I'm sure but was not selected. They are doing another study but I haven't heard so I guess I got passed over for that one too.
I found out that you can make arrangements to have these tests done yourself in Buffalo but as of now insurance companies won't pay. The cost is from $4,500 to $8,000 out of pocket. WOW!
As much as I would love to know if I am a candidate for the procedure I couldn't afford that in my wildest dreams. So I will keep on with the DMD's and IV steroids and wait.
Good luck to you
Erin :)
Hi LLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL
You may want to search this community for other CCSVI discussions - there are much more recent threads than this one, that contain more of the current research. And we also have a member here who was treated by Dr. Dake, Stanford U.
Welcome to our forum - I hope you will find something useful here.
be well,
Lulu
You may want to search this community for other CCSVI discussions - there are much more recent threads than this one, that contain more of the current research. And we also have a member here who was treated by Dr. Dake, Stanford U.
Welcome to our forum - I hope you will find something useful here.
be well,
Lulu
PS, I believe that it is the case that the results published from the Buffalo CCSVI study reported 54% of MS patients had CCSVI. In a magaszine interview the head of research at the university stated that these figures broke down to 24% of MS patients with a clinically isolated episode of MS had CCSVI and 86% of MS patients with RR, SP or PP.
That information is second hand. A detailed breakdown and analysis of the results appear in April.
That information is second hand. A detailed breakdown and analysis of the results appear in April.
The effectiveness of DMDs is explained because the CCSVI, so the theory goes, causes iron to accumulate, and poison the brain and to set of an auto immune response. A response which the DMDs address (sometimes, in some cases). The DMDs are not addressing the root cause.
Hi Erin, We have a number of these conversations going on right now about CCSVI and I imagine more will pop up in the next few weeks.
Shoshin has an appt with Dr Dake at Stanford this coming week to be checked for this problem. You might want to look for her post and read what she has to say.
There are a lot of questions about this Liberation treatment (Dr Zamboni's name for it!) that still need to be answered. On the surface though, it sure looks promising. It is a totally different approach to MS than has been considered before.
I hope you connect with one of the doctors.
be well,
Lulu
Shoshin has an appt with Dr Dake at Stanford this coming week to be checked for this problem. You might want to look for her post and read what she has to say.
There are a lot of questions about this Liberation treatment (Dr Zamboni's name for it!) that still need to be answered. On the surface though, it sure looks promising. It is a totally different approach to MS than has been considered before.
I hope you connect with one of the doctors.
be well,
Lulu
Karen,
From the way I read what I have so far - the reflux is what causes the lesions in the brain. The lesions are usually around or near a vein. I guess that's not engorged but kind of makes sense.
No idea how they would explain the DMD's as I have to admit I don't understand them in the first place, lol that's sad.
Will keep you posted if I get in. Then I will no more about the study because I don't retain much info when I read it but I sure do when I live it!!
Hugs,
Erin :)
Nice. Thanks for the website. I got lots of pages of scoop to read and share from it.
Yesterday was the first that I heard of this when my sister gave me a print out and she had already contacted one of my doctor's asking what he thought. He is the one that wants to see if he can get me in the trial.
I figure that it can't hurt to be checked out if they let me in the trial, right? I will get scoop like limits on meds or any other restrictions before I agree. OMG wouldn't it be great.
Hugs,
Erin :)
Hi. There's been quite a bit of discussion on this topic in the last couple of days. Most have gone to the second page. Take a look around and you'll find them.
It is of interest and potentially promising. My question, is wouldn't the brain be engorged if MS is a vein disorder? Wouldn't that show up on an MRI or have increased intracranial pressure?
Wouldn't that be great if it were so? Hmmmm, how would they explain the DMD's effectiveness if this turns out to be the case?
Be well. Let us know if you get in the trials. Happy Thanksgiving.
It is of interest and potentially promising. My question, is wouldn't the brain be engorged if MS is a vein disorder? Wouldn't that show up on an MRI or have increased intracranial pressure?
Wouldn't that be great if it were so? Hmmmm, how would they explain the DMD's effectiveness if this turns out to be the case?
Be well. Let us know if you get in the trials. Happy Thanksgiving.
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