CCSVI - Aussie Action!

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

Postby CureOrBust » Mon Mar 01, 2010 12:45 am

I got a phone call from Edgecliff radiology lab today. They said that they have the information they need, and are now proceeding on with the scans, and have booked me in for the end of next week.

They implied I was one of the first on their list because I had my appointment rescheduled a few times. Weird thing is, they never rescheduled, but they did cancel it the day before the scan was scheduled for.

I faxed over to them a week or two ago the Dr Dake protocol for a 1.5T GE MRI (which is what they have), that was thankfully posted on this web site by CureIous (http://www.thisisms.com/ftopicp-91984.html#91984). I do not know if they will be using this protocol or something else.
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flow quantification MRV scan

Postby hwebb » Tue Mar 02, 2010 12:22 am

Hi all,

from earlier posts you will know that I had an MRV done at Symbion Imaging, using the Haacke protocol. All scans were achieved, except the flow quantification scan. The head radiologist did not have the software to do this scan, but made enquiries with the software vendor.

The software vendor quoted $10,000 for the software, and Symbion has decided against purchasing it based on the cost.

I believe Melbourne Radiology Clinic are looking at getting the Haacke protocol up and running on their machine also. I'm not sure how this is moving forward.

hwebb
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CCSVI

Postby Opera » Tue Mar 02, 2010 2:04 am

avantitech

Good luck for Thursday- Hope all goes well
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Postby taxi » Tue Mar 02, 2010 6:16 am

just letting folks know that my wife had her first appointment today with prof. thomson (after getting her positive results back from dr jules at melbourne radiology).

prof thomson took one look at the results (posted here a few pages back) and scheduled the ballooning straight away.

it's been a long day and i'm way too tired to go into details but we have the investigation and surgery on 16th march!

thanks to everyone for your trailblazing... my wife will be among the first 10 people to have a ccsvi operation in victoria (and maybe australia?) of course we still don't know if this is going to change her ms course but we are very hopeful.

prof thomson is a really cool guy.

cheers
mark
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Postby avantitech » Tue Mar 02, 2010 6:23 pm

Folks,

It is probably appropriate, now that the first cohort of 10 vascular investigations have been scheduled, to provide contact details for new Aussie patients interested in following up with Prof Ken Thomson after having an abnormal ultrasound finding. I've posted this info in the Sticky Thread as follows:

http://www.thisisms.com/ftopicp-95967.html#95967

A really big thank you to all the Good Folks of the Aussie Thread for all the well wishes on the procedure tomorrow..I'm hoping to post outcomes on a regular basis....

All the best and take care
..Adolfo

P.S. New folks please keep posting your ultrasound & consultation outcomes in order to update the community on progress and new info as it comes to hand. Cheers
Last edited by avantitech on Tue Mar 02, 2010 8:43 pm, edited 1 time in total.
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Postby prairiegirl » Tue Mar 02, 2010 7:13 pm

It is so exciting to hear these results/procedures unfolding in different countries around the world-- go Aussies!! (from Canada)
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Postby Downunder » Wed Mar 03, 2010 5:56 pm

I went to see the good Prof. yesterday and I'm scheduled for my angioplasty on 17th March. (No. 6)

He is a very kind and sensitive person, who is only interested in relieving our symptoms. If you have a stenosis, he will fix it.

He did say he's talking to a collegue in Queensland, so when there's info on that it'll be posted.

For everyone else not in Melbourne, go to the Radiology Dept in your local hospital. It is a very simple proceedure which they do every day.

Good Luck to all
Jennifer
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number 7 for melbourne

Postby hwebb » Wed Mar 03, 2010 9:13 pm

I guess that makes me number 7 (lucky 7)? I'm also booked in for March 17.

Yes - Prof was great. Very patient with all my inane questions

Basically I told him that i was concerned because my problem is in the cranium...not the neck. He said that in his standard procedure, he looks up high in the jugular also..taking pressure measurements all along the way...and ballooning where-ever he detects an obstruction to blood flow. If he finds no obstruction, he doesn't balloon. He said that if my stenosis is at the junction of the transverse sinus and IJV...it's no higher risk than if it was in my neck. If he finds nothing ....he may have to look extra high in my jugular. This will feel uncomfortable as I'll be able to feel his equipment around my ears etc. If I am feeling I can't deal with the discomfort..he can just back the balloon out. So it's kind of an exploratory procedure.

We also discussed the analysis I've had done. I told him I felt apprehensive because I was not able to get a flow quantification MRV...and when they attempted transcranial Doppler on me it revealed no extra info (as they were only able to probe the thinnest parts of my skull - like my temples). I showed him the MRV results I did have. He said that my MRV was not that useful for this problem - the venogram (with pressure measurements) is really the key analytical technique, and neck Doppler could be used after the procedure to determine whether blood continues to flow through to my heart (via the neck). If my vein closes up again...he can just re-balloon.

Phew - a relief. A lot of my fears were ungrounded. Getting advice really helps, I recommend you go and see an interventional radiologist and get advice about treatment options.

hwebb
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Postby elaine » Wed Mar 03, 2010 9:22 pm

hwebb
my godness Prof T makes it all sound so easy, good luck can't wait to hear everyone's updates.
take care and good luck to all.
elaine
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Postby kezzcass » Thu Mar 04, 2010 12:06 am

Downunder wrote:I went to see the good Prof. yesterday and I'm scheduled for my angioplasty on 17th March. (No. 6)

He is a very kind and sensitive person, who is only interested in relieving our symptoms. If you have a stenosis, he will fix it.

He did say he's talking to a collegue in Queensland, so when there's info on that it'll be posted.

For everyone else not in Melbourne, go to the Radiology Dept in your local hospital. It is a very simple proceedure which they do every day.

Good Luck to all
Jennifer


That is wonderful Jennifer! So now something's moving for you :o)
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Postby friday_fc » Thu Mar 04, 2010 2:47 am

Ok Aussie Msers, I need contacts, info, a name to give to the False Creek Care clinic to pass on to their special guest tomorrow, Dr. Simka....below is my communication to them and their reply on Twitter:
(@bickie68 is ME lol)

@bickie68 ...Please Give Dr Simka a BIG hug from me :) and ask him to PLEASE come to Australia and shake things up with our media/doctors?


Falsecreekcare @bickie68 I will ask but send me a contact to pass on to him i will be with him tomorrow and friday.
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Postby avantitech » Thu Mar 04, 2010 5:00 am

Hey Folks!

I'm just checking in to let you good folk know I'm still with you and in good working order - just minor headache and neck pain, moderate, bearable and treatable with a couple of your fav paracetamol brand.

Jennifer & Helen,
I'm glad to hear the good Prof continues to impress with his real professionalism, sensitivity, tact, intellect and you can add good humour as well.

Yes, confirming that PwMS in Qld will hopefully soon be able to access similar services there but it might be a bit longer in NSW. Also the ballooning procedure itself is straightforward and safe but every individual may present with unique problems to address with regard to vessel structures and locations.

My procedure was 2.5 hrs long but Prof T is confident that it will be shorter for most people in forthcoming procedures @ the Alfred. The venography identified 4 areas of reduced blood flow, 3 of which were treatable by ballooning using gradual upsizing of sequentially larger diameter balloons.

My veins were very narrowed/stenosed at those 3 locations - bilaterally the valves were occluded and at a location midway up the Left IJV. The RIJV valve ballooned fairly well with minimal pain, but the LIJV valve and its midway stenosis were more difficult, the latter being the most painful.

I chose no sedation as it's better to be more alert to instructions of inspiring/hold (valsalva) and viewing the imaging on screen. It is a fact that some pain is associated with the balloon inflation but it lasts a minute or two if that, and if it is very painful then it is only an instant or so.

I had a few v.painful instances with the LIJV and it just did not cooperate today and I may very well need to return for a second ballooning. We'll see if today's widening is sufficient and a second attempt may be necessary down the track to keep the LIJV open.

On the Right IJV the location which could not be treated was very high up near the transverse sinus and consisted of a up to dozen small diameter collateral veins eventually joining to the upper RIJV. There may be a solution for this later on but I may have to accept that it is too risky at present to inflate such small veins and perhaps it may not be easily achievable.

Improvements so far are subjective of course and I'd like to wait a few more days before confirming. I will try to provide better clarification in the next few days or week or so depending on how I progress in recovery mode.

I want to thank everyone who included me in their thoughts today and I feel thereby contributed to a positive personal outcome and have collectively shown a way forward for all PwMS in Melbourne and farther afield.

All the best.
...adolfo
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Postby kats » Thu Mar 04, 2010 5:15 am

Very Happy for you I hope you have some great improvements please keep us posted . I have been checking every few minutes to see your update . Well Done . Dr sounds great cannot wait to meet him
Please keep us posted regularly with all your results from procedure :D
Good luck Adolfo!
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CCSVI treatment

Postby Opera » Thu Mar 04, 2010 5:24 am

Adolfo

It is great to hear from you and that the procedure went well. All the best to you the Aussie pioneer who has set CCSVI treatment in motion here.

Pl take care and keep us informed.
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Postby taxi » Thu Mar 04, 2010 5:54 am

great news my man! can't wait till tuesday week for katzi to go in and have a go.

sounds like you've had some positive experience already .. might just be the endorphins tho.

do you have fatigue? will be interesting to see how you sleep tonight.

cheers
m.
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