Last June i had an MRV and i was told i didnt have any CCSVI - My veins were normal.
I then showed Dr S the images and he kindly assessed them and saw stenosis in my IJVs, Azygos and possibly May Turner.
So in August went abroad and had balloon dilation of both IJVs but not azygos as they didnt see stenosis.
Had slight mobility improvement - mainly spasticity and balance,
but one month later the improvements went away,
so in December went to a different country to get the IJVs re-ballooned and azygos/MT checked.
They ballooned the IJVs And azygos but didnt see MT.
This time there was slight improvement in balance/bladder but not spasticity.
So i was unsure whether the IJVs were correctly ballooned.
I showed Dr S the IJVs images post ballooning and he believed there was still stenosis!
So tomorrow i am having my 3rd procedure (4th MRV) but this time have images to show them exactly where to balloon
I was wondering if anyone has any advice on what i can ask the new IR to check/ make sure is clear?
- I read many CCSVI Post procedure reports from patients who have an EDSS like mine (6.0) and see great improvements in mobility.
i only have spinal/lower body problems, upper body and brain work like a healthy person.
- I would love to be treated by Dr S but dont have the money. But this will be my very last MRV, if this time isnt done correctly then I GIVE UP on CCSVI
thank you
DC10
4th MRV (3rd procedure) tomorrow - any advice please?
It sounds like you still have some slight lasting improvements from procedure #2? Or did those go away?
Hopefully the new IR has experience in CCSVI and will know the usual spots. I would hope for a very careful examination of the azygous, if your issues are lower body issues. I know patients who've had May Thurner not diagnosed until their third venogram. There has been some talk lately about the renal vein, which connects to the azygous or hemiazygous. Dr. McGuckin has ballooned the renal vein in a number of patients, Dr. Sclafani has ballooned the renal vein in just one patient. It's one more thing to look at near the azygous. Have you also ever had your ascending lumbar veins imaged? These cannot be ballooned but if they are in poor shape, it may be the problem and it's good just to know. Some MS patients also present with blocked vertebral veins, which are also too small for ballooning. I wouldn't expect any dural sinus issues if you don't have any of the 'cerebral' MS symptoms but you never know.
All the best tomorrow.
Hopefully the new IR has experience in CCSVI and will know the usual spots. I would hope for a very careful examination of the azygous, if your issues are lower body issues. I know patients who've had May Thurner not diagnosed until their third venogram. There has been some talk lately about the renal vein, which connects to the azygous or hemiazygous. Dr. McGuckin has ballooned the renal vein in a number of patients, Dr. Sclafani has ballooned the renal vein in just one patient. It's one more thing to look at near the azygous. Have you also ever had your ascending lumbar veins imaged? These cannot be ballooned but if they are in poor shape, it may be the problem and it's good just to know. Some MS patients also present with blocked vertebral veins, which are also too small for ballooning. I wouldn't expect any dural sinus issues if you don't have any of the 'cerebral' MS symptoms but you never know.
All the best tomorrow.
CECE,
i do have very slight balance improvement which has stayed but it is very slight.but i am sill thankful for that.
my mobility has become worse since the last procedure , EDSS was 5.5 now 6.0 - mainly due to weaker legs
my ascending lumbar is hypoplastic, noted by dr s.
i will ask the IR to see if he can balloon them an to check my renal veins.
thank you, heres hoping
i do have very slight balance improvement which has stayed but it is very slight.but i am sill thankful for that.
my mobility has become worse since the last procedure , EDSS was 5.5 now 6.0 - mainly due to weaker legs
my ascending lumbar is hypoplastic, noted by dr s.
i will ask the IR to see if he can balloon them an to check my renal veins.
thank you, heres hoping
I haven't studied the ascending lumbars well enough. We might need to hope a doctor enters this conversation (or that you get good answers from yours tomorrow).
If the lumbars are hypoplastic, where does the flow go that they would have carried? (I am not entirely sure, but this is why I think 'everything else in the area becomes more important.')
Ideally you'd have an IR who was skilled in IVUS checking for the sorts of septums or hidden issues that are showing up on IVUS but not venogram in the azygous.
Also you'd have the azygous and iliac thoroughly checked. Renal and hemiazygous too, maybe, for good measure (Dr. McGuckin checks these regularly, other IRs do not.)
If the lumbars are hypoplastic, where does the flow go that they would have carried? (I am not entirely sure, but this is why I think 'everything else in the area becomes more important.')
Ideally you'd have an IR who was skilled in IVUS checking for the sorts of septums or hidden issues that are showing up on IVUS but not venogram in the azygous.
Also you'd have the azygous and iliac thoroughly checked. Renal and hemiazygous too, maybe, for good measure (Dr. McGuckin checks these regularly, other IRs do not.)