And my appointment has been cancelled. 
External pressures, 
and I'm close to going postal 
CCSVI - Aussie Action!
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CureOrBust
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CCSVI procedures cancelled
hi all,
saw prof T this morning - CCSVI procedures have been stopped - a clinical trial will hopefully start in August. What a goddamn nightmare.
cheers, nico
saw prof T this morning - CCSVI procedures have been stopped - a clinical trial will hopefully start in August. What a goddamn nightmare.
cheers, nico
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hwebb
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hang in there
nico,
the Nightmare was before CCSVI was identified.
You know, I've had two procedures now - each with its share of success and failure. I can tell you the second procedure I had was so improved upon the first, and there was only 3 months in between. Wait another month or two, and I believe the diagnoses and procedure will be further optimised. I anticipate I'll have more treatment before years end.
So we're on the home strait now - hold on.
the Nightmare was before CCSVI was identified.
You know, I've had two procedures now - each with its share of success and failure. I can tell you the second procedure I had was so improved upon the first, and there was only 3 months in between. Wait another month or two, and I believe the diagnoses and procedure will be further optimised. I anticipate I'll have more treatment before years end.
So we're on the home strait now - hold on.
Re: hang in there
Absolutely agreed. I need a second angioplasty. August isn't far off. Let's all hang in there. I am convinced that the treatment will continue to improve in leaps and bounds......hwebb wrote:nico,
the Nightmare was before CCSVI was identified.
You know, I've had two procedures now - each with its share of success and failure. I can tell you the second procedure I had was so improved upon the first, and there was only 3 months in between. Wait another month or two, and I believe the diagnoses and procedure will be further optimised. I anticipate I'll have more treatment before years end.
So we're on the home strait now - hold on.
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hwebb
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- Location: Melbourne, Australia
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to Val
Val,
Dr Sclafani discusses this in his thread. He argues that IV ultrasound is required during the venogram to detect some subtle venous abnormalities in the jugular and azygos veins. He has even shown Dr Zamboni some subtle problems with veins which Zamboni thought were OK (using Doppler and venogram alone).
There is also much discussion on other veins causing problems (such as lumbar veins).
Definitely, the venogram technique is neither standardised or optimised at this stage. The clinical trials occuring around the world will contribute to improving this situation. You have ome a long way...you've tried the basic treatment for the more basic veinous problems. You know more info about your veins now...including what treatment may/may not work for your situation.
It may be a matter of monitoring the new info being shared worldwide, and waiting for a few more months, before approaching treatment again. Keep in touch with our favourite doctor.
Helen
Dr Sclafani discusses this in his thread. He argues that IV ultrasound is required during the venogram to detect some subtle venous abnormalities in the jugular and azygos veins. He has even shown Dr Zamboni some subtle problems with veins which Zamboni thought were OK (using Doppler and venogram alone).
There is also much discussion on other veins causing problems (such as lumbar veins).
Definitely, the venogram technique is neither standardised or optimised at this stage. The clinical trials occuring around the world will contribute to improving this situation. You have ome a long way...you've tried the basic treatment for the more basic veinous problems. You know more info about your veins now...including what treatment may/may not work for your situation.
It may be a matter of monitoring the new info being shared worldwide, and waiting for a few more months, before approaching treatment again. Keep in touch with our favourite doctor.
Helen
had my 2nd procedure on 9 june. the procedure was great, no question, however the 100 mg of aspirin l was asked to take daily after the procedure was disastrous. as per usual, whenever l take any drug, my alimentary tract ceases its function. my latest doppler results indicate a long segment stenosis of grater than 50 percent for both internal jugular veins. To say I'm not impressed is putting it mildly! It looks as though I won't be getting treated any time soon. Whilst CCSVI is something I need treatment for desperately, everything is on hold whilst the neurologists at the Alfred throw their hissy fit. All the best to everyone, cheers, Nico.Val1964 wrote:I all,
Thought I would write to see how everyone is doing ?How did everyones procedures go last week ?
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hwebb
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yeow
Hey nico,
that sounds horrendous. As I recall, you used to have one pencil stenosis (is that right)? Now both sides are collapsed.
Interesting reading this, and your reaction to drugs. I had a really bad reaction to methylprednisolone (involving unconsciousness, feet twitching violently, etc). When I regained consciousness, my head developed this incredibly tight feeling. It never completely left me. I wonder if these drugs have aggravated the vein lining (endothelial disruption)? Our veins are in a pretty crappy state to start with, so "rubbing salt into the wound" may be enough to exacerbate a stenosis.
Anyway, I'm still going OK after my second procedure. I still have some head tightness (which was focused on my scalp...but seems to be more upper jugular focused now). However, I dont feel the "throbbing" tightness I used to have around the jugular bulb. My thinking is clear, and I dont have fatigue. So I'm cautiously saying my 2nd procedure has been a success (only been 3 weeks though).
sorry to hear of your bad experience. I think it's important to let people know the procedure is not always sunshine and lollipops.
Helen
that sounds horrendous. As I recall, you used to have one pencil stenosis (is that right)? Now both sides are collapsed.
Interesting reading this, and your reaction to drugs. I had a really bad reaction to methylprednisolone (involving unconsciousness, feet twitching violently, etc). When I regained consciousness, my head developed this incredibly tight feeling. It never completely left me. I wonder if these drugs have aggravated the vein lining (endothelial disruption)? Our veins are in a pretty crappy state to start with, so "rubbing salt into the wound" may be enough to exacerbate a stenosis.
Anyway, I'm still going OK after my second procedure. I still have some head tightness (which was focused on my scalp...but seems to be more upper jugular focused now). However, I dont feel the "throbbing" tightness I used to have around the jugular bulb. My thinking is clear, and I dont have fatigue. So I'm cautiously saying my 2nd procedure has been a success (only been 3 weeks though).
sorry to hear of your bad experience. I think it's important to let people know the procedure is not always sunshine and lollipops.
Helen
Re: yeow
hiya helen,hwebb wrote:Hey nico,
that sounds horrendous. As I recall, you used to have one pencil stenosis (is that right)? Now both sides are collapsed.
Interesting reading this, and your reaction to drugs. I had a really bad reaction to methylprednisolone (involving unconsciousness, feet twitching violently, etc). When I regained consciousness, my head developed this incredibly tight feeling. It never completely left me. I wonder if these drugs have aggravated the vein lining (endothelial disruption)? Our veins are in a pretty crappy state to start with, so "rubbing salt into the wound" may be enough to exacerbate a stenosis.
Anyway, I'm still going OK after my second procedure. I still have some head tightness (which was focused on my scalp...but seems to be more upper jugular focused now). However, I dont feel the "throbbing" tightness I used to have around the jugular bulb. My thinking is clear, and I dont have fatigue. So I'm cautiously saying my 2nd procedure has been a success (only been 3 weeks though).
sorry to hear of your bad experience. I think it's important to let people know the procedure is not always sunshine and lollipops.
Helen
thanks for yr kind words. l've always had both jug veins stenosed - the first op fixed the left, the second op fixed the right. l improved heaps after both procedures but aspirin well and truly stuffed things right up, unfortunately.
l wonder if reactivity to medication is widespread? l don't even tolerate Panadol - anyone in the same boat?
Yr experience with methylprednisolone sounds just awful too - how long have u had MS? my 'reactivity' has worsened over time and now my curiosity has been piqued!
cheers, nico
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hwebb
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background
Hi nico,
I have been diagnosed just one year, but suspect I've had MS for around 10 years (have presented at doctors for various weird symptoms, but been misdiagnosed each time). One bad episode around 10 years ago, one mild episode about 2 years ago, then a long bad episode last year which led to my diagnosis (once again the neuro's missed it, but my GP sent me for an MRI - which confirmed the diagnosis. Neuro's only too happy to see me after that).
Once I was diagnosed, I went on "the drugs", and had a nasty episode approx every 6 weeks after that. Some episodes have been clear MS flare ups (sensory symptoms), but most have involved congnitive problems (loss of short term memory and sense of direction for about 3-5 days each episode).
The first CCSVI procedure fixed up my azygos vein. The result of this was that I no longer woke up each night with strong nausea, only solved by sitting up in bed. Also, I no longer woke up each night with numb arms. However, my jugular stenosis was not resolved. I was still getting cog fog, fatigue, and my memory loss episodes.
Second procedure has seemed more successful opening my left IJV. Cog fog and fatigue are not a problem at the moment. Let's hope I dont lose my memory again!
I'm very interested in dropping my MS drug altogether - since my relapse rate increased when i started this drug, and its made me lose a lot of hair. The relapse rate increase may be a cooincidence though. Maybe I just happened to start the drug as my veins started to really collapse. I'll see how I go.
I have been diagnosed just one year, but suspect I've had MS for around 10 years (have presented at doctors for various weird symptoms, but been misdiagnosed each time). One bad episode around 10 years ago, one mild episode about 2 years ago, then a long bad episode last year which led to my diagnosis (once again the neuro's missed it, but my GP sent me for an MRI - which confirmed the diagnosis. Neuro's only too happy to see me after that).
Once I was diagnosed, I went on "the drugs", and had a nasty episode approx every 6 weeks after that. Some episodes have been clear MS flare ups (sensory symptoms), but most have involved congnitive problems (loss of short term memory and sense of direction for about 3-5 days each episode).
The first CCSVI procedure fixed up my azygos vein. The result of this was that I no longer woke up each night with strong nausea, only solved by sitting up in bed. Also, I no longer woke up each night with numb arms. However, my jugular stenosis was not resolved. I was still getting cog fog, fatigue, and my memory loss episodes.
Second procedure has seemed more successful opening my left IJV. Cog fog and fatigue are not a problem at the moment. Let's hope I dont lose my memory again!
I'm very interested in dropping my MS drug altogether - since my relapse rate increased when i started this drug, and its made me lose a lot of hair. The relapse rate increase may be a cooincidence though. Maybe I just happened to start the drug as my veins started to really collapse. I'll see how I go.