Hi, everybody!
I recently had a doppler done in France, that showed no blood flow at the left side of the neck and a stenosis in the right jugular vein.
Than I had an MRV done.
The doctor explained it to me, telling me that I had no left jugular vein at all, and that there was a stenosis in the right jugular vein that could be ballooned while doing the veinography.
I had this veinography some days ago. No left jugular vein could be found, and no stenosis on the right jugular vein either. All the other veins were O.K. Unfortunately, nothing could be done for me.
Has anybody heard about such a condition allready?
I am really very disasappointed. CCSVI treatment was my only hope for a cure since my diagnosis in 2007.
I wish all of you will be more lucky than I was
Indiana
no left jugular vein
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cheerleader
- Family Elder
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Indiana--So sorry for your result---we had a young man post his picture of his missing jugular here earlier....
http://www.thisisms.com/ftopict-9753-joel.html
Maybe get in touch with Dr. Haacke, to see if anything was ever decided on Joel's case. Hoping you get some more answers-
best,
cheer
http://www.thisisms.com/ftopict-9753-joel.html
Maybe get in touch with Dr. Haacke, to see if anything was ever decided on Joel's case. Hoping you get some more answers-
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
hello
sorry to hear they could not help you at all. i suppose you missing a jugular veine is supposrting the theory of ccsvi, as that must be som venous malformation, if you are missing a veine alltogether.
there has been other patients reporting venous problems that can not be fixed as well, and I suppose we are all dreading that that would be us. all hoping we will have a venous problem that can be fixed.
i'm sorry but i have not much comfort to give you. maybe you should look at diet and other remedies that has to do with blood velocity, that could help circulation in any sort of way.
maybe the doctors that found this, get so intrigued by it that they can reconstruct your veines. hopefully that could be part of the future. the more serious they start taking ccsvi, the moer solutions to the problems they can find.
sorry to hear they could not help you at all. i suppose you missing a jugular veine is supposrting the theory of ccsvi, as that must be som venous malformation, if you are missing a veine alltogether.
there has been other patients reporting venous problems that can not be fixed as well, and I suppose we are all dreading that that would be us. all hoping we will have a venous problem that can be fixed.
i'm sorry but i have not much comfort to give you. maybe you should look at diet and other remedies that has to do with blood velocity, that could help circulation in any sort of way.
maybe the doctors that found this, get so intrigued by it that they can reconstruct your veines. hopefully that could be part of the future. the more serious they start taking ccsvi, the moer solutions to the problems they can find.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
Hi Indiana,
I suppose not having a vein would mean there is no reflux but slower draining. Maybe having no jugular might be better than a broken one???
There are stories of MS patients who have overcome MS without treating their veins so maybe it is down to removing toxins and keeping the blood moving.
How bad is your MS? How long have you had MS symptoms for?
L
I suppose not having a vein would mean there is no reflux but slower draining. Maybe having no jugular might be better than a broken one???
There are stories of MS patients who have overcome MS without treating their veins so maybe it is down to removing toxins and keeping the blood moving.
How bad is your MS? How long have you had MS symptoms for?
L
do you have reflux in the right jugular or collaterals built around it? Those would be indicators that it's not capable of handling the full flow. It is strange for the doppler to show a stenosis but not the venogram...but the venogram is the true test, so that's right.
It might be that as this becomes better understood another doctor will be able to find a stenosis in the jugular or in the azygous. It would seem though that the lack of a jugular is enough to be the whole problem right there. There has been a report of someone going to India and getting a 'venous graft' which I think is a vein taken from the leg (?) and grafted in as a new jugular. This is fairly big surgery and experimental, as I understand, but maybe it could be a future option.
Just thinking here, but could the one jugular be ballooned even though it doesn't have a stenosis? Would that make it bigger and more able to handle flow?
It might be that as this becomes better understood another doctor will be able to find a stenosis in the jugular or in the azygous. It would seem though that the lack of a jugular is enough to be the whole problem right there. There has been a report of someone going to India and getting a 'venous graft' which I think is a vein taken from the leg (?) and grafted in as a new jugular. This is fairly big surgery and experimental, as I understand, but maybe it could be a future option.
Just thinking here, but could the one jugular be ballooned even though it doesn't have a stenosis? Would that make it bigger and more able to handle flow?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
hello, guys!
Thank you so much for all your nice comments and your advices!
My MS was diagnosed on october 2007, at the age of 51.
I had two bad relapses until now, all the lesions are in the spinal cord.
I am suffering from sensitive problems, weekness in in the legs and pain.
After my second exacerbation, I was supposed to take MS drugs, but I could not decide to start with it, and when I heard about CCSVI and I found out (thanks to Whyrewehere and Jean la grenouille!) that it was possible to have the procedure in France, where I live, I thaught that it might be an alternative to those hard treatments.
On the doppler report was written" No blood flow detected on the leftt side."
I suppose that this is a problem.
I pay attention at my food, I take omega 3 capsules, try to avoid stress, but that is all.
Thank you for the link, cheer, I will see if there was anything done for that young man.
I wish you a nice evening and a successful procedure
Love Indiana
Thank you so much for all your nice comments and your advices!
My MS was diagnosed on october 2007, at the age of 51.
I had two bad relapses until now, all the lesions are in the spinal cord.
I am suffering from sensitive problems, weekness in in the legs and pain.
After my second exacerbation, I was supposed to take MS drugs, but I could not decide to start with it, and when I heard about CCSVI and I found out (thanks to Whyrewehere and Jean la grenouille!) that it was possible to have the procedure in France, where I live, I thaught that it might be an alternative to those hard treatments.
On the doppler report was written" No blood flow detected on the leftt side."
I suppose that this is a problem.
I pay attention at my food, I take omega 3 capsules, try to avoid stress, but that is all.
Thank you for the link, cheer, I will see if there was anything done for that young man.
I wish you a nice evening and a successful procedure
Love Indiana
Indiana
Here is a link to someone with your same condition (maybe you've already seen it) .
http://www.thisisms.com/ftopict-9753.html
Did you have an MRV or a venogram (catheter) ? Because the venogram is considered the gold standard, so maybe there is something fixable.
Fernando
Here is a link to someone with your same condition (maybe you've already seen it) .
http://www.thisisms.com/ftopict-9753.html
Did you have an MRV or a venogram (catheter) ? Because the venogram is considered the gold standard, so maybe there is something fixable.
Fernando
I can second this...then we will all get to hear his answer, too.shye wrote:Why not post on Dr Sclafani's thread? He will reply, you will get some professional answers.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Hello again!
Thank you so much for the interest that you show on my case!
To answer to some of your questions:
I had an MRV first and than a venogram. During this examination, the doctor had the intention to balloon the stenosis visible in the right jugular vein (on the MRV).
When she entered into the vein, she realized that it was rather large, and that the blood flow was normal, no stenosis, no reflux. I don't know wether there are collaterals around the vein, I did not get the report yet.
During the venogram, the whole venous system was checked, the azygous as well, everything was perfect, according to the doctor who has much of experience.
The doctor who did the doppler tested the flux in the lying and the sitting position, and there was no difference. He told me that the inclined bed therapy was not useful for me.
Even if all the blood of my cerebral venous system is drained by the right jugular vein, there seams to be no obvious blood flow problem as one can normally find it on CCSVI patients.
The doctor could not tell me if there was a relation between the lack of the left jugular vein and my MS symptoms. And even if there was one, it seems difficult to operate that.
Does somebody remember if the person planning to have a "venous graft" in India posted on this forum?
I will explain my case to Dr Sclafani and we will wait for his answer.
Indiana
Thank you so much for the interest that you show on my case!
To answer to some of your questions:
I had an MRV first and than a venogram. During this examination, the doctor had the intention to balloon the stenosis visible in the right jugular vein (on the MRV).
When she entered into the vein, she realized that it was rather large, and that the blood flow was normal, no stenosis, no reflux. I don't know wether there are collaterals around the vein, I did not get the report yet.
During the venogram, the whole venous system was checked, the azygous as well, everything was perfect, according to the doctor who has much of experience.
The doctor who did the doppler tested the flux in the lying and the sitting position, and there was no difference. He told me that the inclined bed therapy was not useful for me.
Even if all the blood of my cerebral venous system is drained by the right jugular vein, there seams to be no obvious blood flow problem as one can normally find it on CCSVI patients.
The doctor could not tell me if there was a relation between the lack of the left jugular vein and my MS symptoms. And even if there was one, it seems difficult to operate that.
Does somebody remember if the person planning to have a "venous graft" in India posted on this forum?
I will explain my case to Dr Sclafani and we will wait for his answer.
Indiana
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hwebb
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check your PM
Indiana,
please clear your Private Messages - I am trying to send you some info but it looks like your Inbox is full.
Helen
please clear your Private Messages - I am trying to send you some info but it looks like your Inbox is full.
Helen