CCSVI - Aussie Action!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby taxi » Wed Mar 17, 2010 5:40 am

ok, am hugely knackered but really want to write this stuff down.

katz had a really great day today, still very tired (baby waking up several times during the night will do that) but she woke up with much more energy and was able to go through the day much longer than normal. but it's not necessarily indicative of anything since she did still have a bit of a crash later this afternoon. but still the signs are encouraging. once the pain goes and (if) she manages a decent night's sleep we will be able to say more.

for those who are curious about what happens in the hospital, here's our experience.

we rocked up for our appointment at 9.30am in the alfred centre where we were given a bed in the "medical day center" (or something) on the 1st floor. parking is a bit of a mess (cost about $28 for the day) and you have to guess which lift will work since the building is still being built.

although the appointment was for 9.30am, the actual venogram wasn't scheduled until 11.30am, so we were asked to fill in a MS QoL survey, and then at about 11am katz was asked to change into a gown and then an orderly came and picked her up and wheeled her bed into the radiology waiting room. the waiting room is kinda dodgy!

at about 11.30 Dr Tuan (I think that was his name) came and explained the procedure to us. Then she was wheeled out to the actual radiology operating theatre. we were told various things about if i would be allowed to accompany her (yes, no, maybe) but ultimately i just hung around and they let me in.

it was very busy and there were loads of people but they were all pretty friendly and i was able to sit with katz while they set everything up. once they were ready to go (they put on their lead aprons!) i was asked to sit behind the glass and watch from there.

they had katz in one of those spinal things where you can't move your head, which was a bit unpleasant for her as she couldn't see or hear much of what was going on. i could see everything and had a monitor of my own to watch.

it is rather amazing and a bit disturbing to watch your best friend and partner's skull moving on the x-ray machine as she talks - while a wire is wiggling around inside it! the wire just sort of pokes around looking for a way forward. eventually they start releasing the iodine and you can see the stenosis, or in our case the complete lack of a stenosis. this part was quite upsetting.

back out of the right and into the left and it was far more interesting as sure enough there was quite the blockage, "definitely an abnormality" as the prof said. he came out and spoke to me and told me that they would be ballooning that one, and so he did. the ballooning went pretty quickly and afterwards you could see that the blood flow was substantially better than before. then he gave me a big thumbs up through the glass!

then he zigged down to the azygos which checked out OK.

Finally, they closed everything down, out of the OR we go, back to the waiting room for 20 minutes and then back to our allotted slot in the day care centre. katz was not allowed off her back at all for 2 hours - so a word of advice, don't drink too much before you go in cos you'll need a bedpan if you need to pee.

after 2 hours katz was allowed to sit up straight and to walk (straight to the loo!), after which prof T came over to chat to us.

we discussed how the right vein was not stenosed and prof T told us that in most cases the left and right jugs are basically joined together but in some cases including katz, the left drains one part of the brain (top or bottom) and the right the other. we were concerned because we thought that the veins were draining the individual hemispheres, while she has symptoms on both sides of the body - but apparently this is not the case, and it all made a lot of sense to us.

we also asked if it was worth going back to melbourne radiology to get the doppler done again to see if we get the same results as last time, since the original doppler said katz had stenosis of both veins. Prof T thought there was some scientific merit in it and suggested we could probably get it on medicare as a follow up test. however, he also said that the ultrasound was "voodoo" (or words to that effect) - basically the blood flow numbers are calculations which are based on a number of assumptions such as the diameter of the vein, which can't accurately be determined by ultrasound. he said ultrasound "is half right half the time" and this is why he really wants to get in there with the catheter and have a proper look around. he also said they could technically do a followup ultrasound at the Alfred but it would have more meaning if done using the same equipment and people at melbourne radiology, and i see his point.

i think this voodoo comment is really interesting and i suggest that anyone who hasn't had a stenosis found should still consider talking to Prof T. he is an awesome dude and very sympathetic to what we are trying to do. he has been nothing but kind, ernest and very much interested in telling us what he thinks and what is going on.. it's really refreshing. so i'd suggest that if the doppler results aren't what you're expecting then don't put too much weight on it. to be honest i don't think he was actually expecting everyone to have problems in the OR. so this is all very interesting information.

anyway... we headed home after this and one of the docs will be calling us tomorrow probably to see how katz feels. no lifting of heavy weights for a few days (though it's hard to avoid lifting our 13 month old!). the current literature says it's OK to breastfeed immediately afterwards but katz didn't want to so we discovered that our baby will drink warm soy milk from a bottle and think it's breast milk (go figure, i think she's self weaning!).

symptomatically, we don't have much to report really. she seemed far less fatigued and said that she felt like she was "thinking better" but given the very poor sleep because of our little girl last night she still had a bit of a crash later in the afternoon. but truth to tell, i'm quite healthy and i'm exhausted too, so it's impossible to separate one thing from the other. but i definitely thought there was a spark in her eyes that i haven't seen for a while... hopefully we will have a bit of a clearer picture tomorrow... we've just moved the little one into her own bedroom at long last so with any luck we will have a pretty good sleep.

finally ... thanks so much to everyone who has been involved in getting us to this point, in particular to adolfo who gave me the details for both melbourne radiology and for prof T, and of course all the others who have brought the whole thing to life for us all around the world. 13 months ago our lives changed magically when our little girl was born. 10 months ago our life changed again with the diagnosis of MS and katz partial blindness in one eye (that hasn't gone away and makes her work quite difficult) and almost constant pain and dreadful fatigue. 9 months later the ultrasound, 3 weeks later and we're the 4th people in australia to have the liberation treatment. we have just had some seriously awesome karma and i am immensely grateful.

and great public thanks to melbourne radiology for doing the tests and of course prof. T for understanding what it's like on our side of the fence, and for being open minded. what a guy!
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Postby Downunder » Wed Mar 17, 2010 5:32 pm

Sono Liberata!! No. 5!!
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Treatment in Sydney

Postby rosco » Wed Mar 17, 2010 9:58 pm

Rang Professor Lourens Bester staff today but need a referral and she told me the only one referring at the moment is Dr Paul Thibault who is a long way from us in Newcastle. We are near Cambelltown so a reasonable journey for my wife with catheters, bowel issues and wheelchairs that I would prefer not to do ..

So she tells me I can get another doctor to do the referral so the question is who else in Sydney is likey to do a referral ? Is it as simple as our local GP ? Or do I need someone else, like we are due to see her rehab doctor at Camden Hospital who historically has been very supportive.

Is anyone is able to shed some light on what I should do next .. if I need to take her to Newcastle its do-able ..

thanks ..
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Doppler in Melbourne

Postby dean_b » Wed Mar 17, 2010 11:36 pm

g'day all,
i'm a newbie here on behalf of my sis, who had her doppler done at melbourne radiology by Dr Julie Gregg recently. I read with great interest and am really encouraged that so many aussies are pushing for this testing and treatment, and hope that everyone who gets the procedure done gets continuing and lasting improvement :). I guess this is directed to those folks who have had inconclusive or discouraging doppler results, and whether there was still hope through further testing, MRV, venogram, etc. The head radiographer and Dr Gregg herself mentioned to us and our GP that the doppler results were normal, apart from a slight abnormality on the right jugular which is insignificant. After recieving the report, it seems there is an abnormality with the right IJV flow, and we are anxious to see whether this is worth investigating further. Our GP has no idea on this topic, had no real cardiovascular person he could refer us to and basically relayed what the radiographer told him. I have pasted the results below, and would greatly appreciate any comment from anybody as to whether the stenosis mentioned is worth investigating further, or whether the radiographer is spot-on in his analysis and we should just move on.. we are grateful for any advice and wish all aussie msers success in their ccsvi quest! many thanks.

US DOPPLER NECK VEINS

FINDINGS:

RIGHT SUPINE ERECT
IJV AREA (mm2) 61(N 69-143) 17(N 9-25)
IJV DOPPLER VOL (ml/m) 64(N 430-970) 19(N 0-170)
VERTEBRAL AREA (mm2) 5.2(N 7.8-13.4) 4.2(N 8.3-15.5)
VERTEBRAL DOPP VOL (ml/m) 24(N 20-60) 58(N 90-330)

LEFT SUPINE ERECT
IJV AREA (mm2) 36(N 69-143) 10(N 9-25)
IJV DOPPLER VOL (ml/m) 343(N 430-970) 253(N 0-170)
VERTEBRAL AREA (mm2) 3(N 7.8-13.4) 13(N 8.3-15.5)
VERTEBRAL DOPP VOL (ml/m) 15(N 20-60) 378(N 90-330)

Stenosis: Yes

Internal jugular vein stenosis with peak systolic velocities of 74cm/sec and prestenotic velocities of 20cm/sec correlate with a greater than 50% stenosis.

Aneurysm: No

Reflux: (>0.88 sec): No

DCSA IJV (N>0): Supine – Erect CSA IJV Right: Normal Left: Normal

COMMENTS:
1. Bilaterally reduced flows in the internal jugular veins in the supine position however moreso on the right.
2. Mildly increased flows of the left internal jugular vein in the erect position and left vertebral vein is of uncertain significance.
3. Right internal jugular vein stenosis greater than 50%.
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Re: Doppler in Melbourne

Postby nico » Thu Mar 18, 2010 12:45 am

dean_b wrote:g'day all,
i'm a newbie here on behalf of my sis, who had her doppler done at melbourne radiology by Dr Julie Gregg recently. I read with great interest and am really encouraged that so many aussies are pushing for this testing and treatment, and hope that everyone who gets the procedure done gets continuing and lasting improvement :). I guess this is directed to those folks who have had inconclusive or discouraging doppler results, and whether there was still hope through further testing, MRV, venogram, etc. The head radiographer and Dr Gregg herself mentioned to us and our GP that the doppler results were normal, apart from a slight abnormality on the right jugular which is insignificant. After recieving the report, it seems there is an abnormality with the right IJV flow, and we are anxious to see whether this is worth investigating further. Our GP has no idea on this topic, had no real cardiovascular person he could refer us to and basically relayed what the radiographer told him. I have pasted the results below, and would greatly appreciate any comment from anybody as to whether the stenosis mentioned is worth investigating further, or whether the radiographer is spot-on in his analysis and we should just move on.. we are grateful for any advice and wish all aussie msers success in their ccsvi quest! many thanks.

US DOPPLER NECK VEINS

FINDINGS:

RIGHT SUPINE ERECT
IJV AREA (mm2) 61(N 69-143) 17(N 9-25)
IJV DOPPLER VOL (ml/m) 64(N 430-970) 19(N 0-170)
VERTEBRAL AREA (mm2) 5.2(N 7.8-13.4) 4.2(N 8.3-15.5)
VERTEBRAL DOPP VOL (ml/m) 24(N 20-60) 58(N 90-330)

LEFT SUPINE ERECT
IJV AREA (mm2) 36(N 69-143) 10(N 9-25)
IJV DOPPLER VOL (ml/m) 343(N 430-970) 253(N 0-170)
VERTEBRAL AREA (mm2) 3(N 7.8-13.4) 13(N 8.3-15.5)
VERTEBRAL DOPP VOL (ml/m) 15(N 20-60) 378(N 90-330)

Stenosis: Yes

Internal jugular vein stenosis with peak systolic velocities of 74cm/sec and prestenotic velocities of 20cm/sec correlate with a greater than 50% stenosis.

Aneurysm: No

Reflux: (>0.88 sec): No

DCSA IJV (N>0): Supine – Erect CSA IJV Right: Normal Left: Normal

COMMENTS:
1. Bilaterally reduced flows in the internal jugular veins in the supine position however moreso on the right.
2. Mildly increased flows of the left internal jugular vein in the erect position and left vertebral vein is of uncertain significance.
3. Right internal jugular vein stenosis greater than 50%.


howdy dean,

if it's any consolation, my doppler results did not indicate a stenosis at all, yet blood flows were way abnormal. upon having the procedure, Prof T found them - the one in the right jug for example, was 8 cms long. l suggest you see him, he is the best person to advise you. cheers, nico
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Re: Doppler in Melbourne

Postby avantitech » Thu Mar 18, 2010 12:55 am

dean_b wrote:RIGHT SUPINE ERECT
IJV AREA (mm2) 61(N 69-143) 17(N 9-25)
IJV DOPPLER VOL (ml/m) 64(N 430-970) 19(N 0-170)
VERTEBRAL AREA (mm2) 5.2(N 7.8-13.4) 4.2(N 8.3-15.5)
VERTEBRAL DOPP VOL (ml/m) 24(N 20-60) 58(N 90-330)

LEFT SUPINE ERECT
IJV AREA (mm2) 36(N 69-143) 10(N 9-25)
IJV DOPPLER VOL (ml/m) 343(N 430-970) 253(N 0-170)
VERTEBRAL AREA (mm2) 3(N 7.8-13.4) 13(N 8.3-15.5)
VERTEBRAL DOPP VOL (ml/m) 15(N 20-60) 378(N 90-330)

Stenosis: Yes

Internal jugular vein stenosis with peak systolic velocities of 74cm/sec and prestenotic velocities of 20cm/sec correlate with a greater than 50% stenosis.

COMMENTS:
1. Bilaterally reduced flows in the internal jugular veins in the supine position however moreso on the right.
2. Mildly increased flows of the left internal jugular vein in the erect position and left vertebral vein is of uncertain significance.
3. Right internal jugular vein stenosis greater than 50%.


G'day Dean and welcome.

Your sister's Color Doppler results do appear to indicate a stenosis and abnormal blood flows in both Internal Jugular Veins.

Often these are caused by narrowing somewhere in the IJV and/or an incompetent valve towards the end of the IJV.

I therefore would call Prof Thomson or Jan his PA on Tel: 9076 2536 after faxing him the 2 page report on 9076 2988, and see what he thinks about it. See this thread for further info:
http://www.thisisms.com/ftopic-8778-day ... html#95967

Cheers,
..Adolfo
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Re: Doppler Protocol

Postby lodgernz » Thu Mar 18, 2010 2:57 am

avantitech wrote:Hi Roger,
Try this small collection here:
http://www.voyager2.com.au/index.php?op ... &Itemid=10
..Adolfo


Thanks Adolfo. Trying to set something up in Wellington...
Cheers, R
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Postby kezzcass » Thu Mar 18, 2010 3:16 am

Hi everyone,

Rather than write down how I am travelling one week after the procedure I have used my normal medium of Youtube. Please see brief update:

http://www.facebook.com/pages/CCSVI-AUS ... 799?ref=ts

Am loving seeing so many joining the discussion.

Kerri :D
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Re: Treatment in Sydney

Postby Opera » Thu Mar 18, 2010 3:28 am

rosco wrote:Rang Professor Lourens Bester staff today but need a referral and she told me the only one referring at the moment is Dr Paul Thibault who is a long way from us in Newcastle. We are near Cambelltown so a reasonable journey for my wife with catheters, bowel issues and wheelchairs that I would prefer not to do ..

So she tells me I can get another doctor to do the referral so the question is who else in Sydney is likey to do a referral ? Is it as simple as our local GP ? Or do I need someone else, like we are due to see her rehab doctor at Camden Hospital who historically has been very supportive.

Is anyone is able to shed some light on what I should do next .. if I need to take her to Newcastle its do-able ..

thanks ..


Pl try your local GP -they may be able to give the referral
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Postby taxi » Thu Mar 18, 2010 3:54 am

hi dean_b, remember that melbourne radiology also don't test your azygos (spinal) vein, which dr Z has implicated in CCSVI as well.

best thing for you to do is to go to your GP and get a referral to Prof. T... he is a very nice man and I'm pretty sure he will help you on the basis of those results. He is seeing MS patients and knows about CCSVI. And he's the head radiologist at the Alfred Hospital.

cheers
Mark
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Postby Opera » Thu Mar 18, 2010 3:56 am

Rosco

I am not sure whether your wife has been tested for CCSVI. If she has been tested you can ask your GP for a referral and see Dr Bester with the test results. If not, I do not know whether your GP will agree to give a referral and also whether Dr Bester will see you without the results of a test. You can ask Dr Bester's staff to clarify this.
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Postby rosco » Thu Mar 18, 2010 4:32 am

Opera wrote:Rosco

I am not sure whether your wife has been tested for CCSVI. If she has been tested you can ask your GP for a referral and see Dr Bester with the test results. If not, I do not know whether your GP will agree to give a referral and also whether Dr Bester will see you without the results of a test. You can ask Dr Bester's staff to clarify this.


Opera, thanks for responding ..

No she hasn't so where does one need to go in Sydney for a CCSVI test ? I am also concerned that the results are not that accurate after reading this forum but I guess its just one step at a time.
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Sydney CCSVI Clinic

Postby vein1 » Thu Mar 18, 2010 4:41 am

The Australasian College of Phlebology is taking CCSVI seriously and is the process of organising clinics throughout Australia and New Zealand to assist patients with MS that may have CCSVI. However, due to resistance from other areas of the medical profession, it is a slow and difficult task.

Phlebologists are specialist vein doctors. Professor Zamboni, as well as being a vascular surgeon, is also a phlebologist, and this is the practice through which his work is best known. Professor Zamboni has accepted our invitation to attend our Annual Scientific Meeting in Melbourne March 2011.

Our role is to assess then advise how CCSVI is best managed. As a multi-disciplinary body, we are fortunate to have interventional radiologists as part of our membership, and these, along with interested vascular surgeons are helping to provide the early, minimally invasive, therapeutic interventions.

Melbourne patients are fortunate to have Professor Thomson already actively engaged in the treatment of CCSVI. His IR colleague, Professor Bester is also enthusiastic to provide a similar service in Sydney.

I am in the process of setting up the first dedicated CCSVI Clinic in Sydney, and I hope this to be operating by mid April. In the meantime, I am pleased to see and assess MS patients in my office in Newcastle.

Dr Paul Thibault
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Re: Treatment in Sydney

Postby CureOrBust » Thu Mar 18, 2010 4:43 am

rosco wrote:So she tells me I can get another doctor to do the referral so the question is who else in Sydney is likey to do a referral ? Is it as simple as our local GP ? Or do I need someone else, like we are due to see her rehab doctor at Camden Hospital who historically has been very supportive.
Any GP can give you a referral.
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MS & Colour Vision Deficits

Postby avantitech » Thu Mar 18, 2010 5:16 am

kezzcass wrote:Hi everyone,

Rather than write down how I am travelling one week after the procedure I have used my normal medium of Youtube. Please see brief update:

http://www.facebook.com/pages/CCSVI-AUS ... 799?ref=ts

Am loving seeing so many joining the discussion.

Kerri :D


Hey Kerri, very interesting!! fatigue, voice and appearance of your face seem to be the first noticeable changes to both you and your loved ones.

The color vision improvement (your increased perception of green) is of significance because there have been studies which correlate colour disturbances with MS. I for one am red-green challenged with up 65% of PwMS affected.*

How many of us have color vision issues?

Have you had optic neuritis attacks before and has your neuro conducted tests confirming some level of deficit in color perception?

*http://www.ncbi.nlm.nih.gov/pubmed/3664369
where the summary states "Colour deficits were found in 45% of patients tested with the Ishihara plates and 42.5% of patients tested with the FM 100-Hue test. 65% of M.S. patients failed at least one of the tests."
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