CCSVI - Aussie Action!

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

Postby kezzcass » Thu Mar 04, 2010 2:21 pm

Hi Adolfo,

2.5 hours! Now I am nervous!! But good to know the Prof is being so thorough.

Thanks so much for sharing and I look forward to hearing how you fare in the coming days.

Kerri
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Postby elaine » Thu Mar 04, 2010 3:11 pm

well done Aldofo
even my kids have been asking me if i had heard anything yet, so yes there is alot more people than you can imagine thinking of you.I can't wait to make my appointment to see Proff T then when we all have the procedure done us Melbournians should get together and have a Liberation party.
Hope you get better soon
Elaine
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Postby friday_fc » Thu Mar 04, 2010 4:04 pm

can someone pm me prof. t's contact details please? I take it he is in melbourne. is he a VS? Sorry, about my vagueness.
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great news Adolfo!

Postby nico » Thu Mar 04, 2010 4:15 pm

v glad to hear all went well, Adolfo. l'm down for next Friday, at this point, all l'm looking for is pain relief and being able to type! l am sooo happy for u Adolfo, please do keep us posted. cheers, nico
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Postby Salvatore24 » Thu Mar 04, 2010 6:09 pm

Awesome news Adolfo, let the good times roll now :)
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Postby avantitech » Thu Mar 04, 2010 8:13 pm

Hi folks, just a few more observations regarding Prof Thomson & the endovascular procedure:

The venogram is a very much a straightforward and routine procedure at the Alfred Hospital and has been applied in many complex clinical settings.

My procedure took longer as the team needed to familiarise themselves with the clinical setting, the procedure application & hardware required. The average procedure is expected to be considerably less and you'll likely spend more time waiting rather than on the op. table so please do not stress.

Prof did have look at my azygous vein and found it to be in good order with normal appearing flow and will investigate it in every patient.

Prof is a leading expert in the development and use of the awesome multi mil$ angiography technology and is highly experienced in complex procedures eg ask Prof about the Glen Campbell case (no not the singer)

Prof & his team use the angiography suite equipment & tools with great dexterity and care. The nursing staff were also very good in pre and post care. I wish and hope everyone will have a positive experience and excellent outcomes in their forthcoming procedure.

I've been given a CD containing snapshots of the venography completed during my procedure. I will post images and descriptions soon.

All the best to Elaine, Kerri, Nico, Jennifer, Helen, Daniel, Matt, George, Mark, Katzi and wish to acknowledge the inspiration of Phil who as Brainteaser started the ball rolling with the Aussie thread.

Cheers,
..adolfo
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Postby Downunder » Fri Mar 05, 2010 7:10 pm

Aventitech,

Don't forget you are our pioneer too!!
Without you, I wouldn't be getting treatment soon.

Best wishes
Jennifer
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Postby avantitech » Sat Mar 06, 2010 2:03 am

Hi Jennifer...cheers
come to think of it I did watch a lot of Daniel Boone when I was a little tyker...where's my Coon hat?

I'm feeling a bit more feisty...headache all gone.
Neck discomfort gone but sides are sore to the touch..
Will report more on Monday.

Can I just offer 2 pieces of advice for next venogramers ..

1. Aspirin - just check with preop nurse or Prof about being prescribed aspirin just in case you may have an unknown clotting response post venogram.

2. OT Air Con Set High to Cool theatre & equipment - a little uncomfortable. On the Op table ask attending staff if you could have an extra blanket on your chest & arms unless you like the cold or don't shivering the whole time...just a thought.

Go Aussies
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Postby friday_fc » Sat Mar 06, 2010 6:56 pm

congratulations on the procedure with Prof T, is your report in the 'tracking' thread? So much to go through there, lol.

Regarding Prof T, he sure is known not only here but overseas too - we're in good hands - what a relief!! I got this response from FalseCreek clinic in Canada when I gave them our Prof's contact details:

falsecreekcare: Dr Cooperberg has made contact and so will Simka. Cooperberg knows him well.
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Postby Downunder » Sun Mar 07, 2010 5:31 pm

Our very best wishes to Daniel for tomorrow's procedure.
You are in very safe hands.

Regards
Jennifer
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Postby avantitech » Sun Mar 07, 2010 10:26 pm

Folks,
Saturday I saw my street replaced by a Deliverance type raging river and my backyard transformed into Niagara Falls. I had to siphon away water 3 bricks high sitting against the house. Ceiling light transformers gone from water damage, telephone out of service. Yesterday helped in cleaning up inside and out and then I attended a family function. Still more cleaning up today. Thus I've had a Long Weekend full of opportunities to push myself and find my limitations.

Improvements Post Op + 4 days

1. A more relaxed throat and my voice appears stronger.
2. I can empty the bladder more completely & less frequently.
3. Pronounced reduction in fatigue.
4. Less tremor in arms/hands (can hold a full cup of coffee or drink without spill).
5. Less right leg spasm at night.
6. Waking up refreshed rather than tired.
7. Clearer & quicker thinking.

Folks, I've had MS for many years now and consequently neurological damage has accumulated as well as losses in muscle conditioning & fitness, and this being reflected in reduced physical activities.

Realistically functional losses relating to balance, motor skills and muscle coordination cannot be regained quickly and will need rehabilitation such as appropriate and sustained exercise over time. I intend to stay on Tysabri for the time being in order to control any ongoing inflammation processes.

I'm hoping Prof Thomson will find a solution for the network of collaterals high in the Right IJV. If not I may be stuck with this primary vein abnormality. We'll see in a month's time at my next appointment. I will try to post venogram images tonight for illustration pre and post procedure.

Wishing you all the best tomorrow Daniel!!
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Postby Salvatore24 » Sun Mar 07, 2010 10:35 pm

avantitech wrote:Folks,
Saturday I saw my street replaced by a Deliverance type raging river and my backyard transformed into Niagara Falls. I had to siphon away water 3 bricks high sitting against the house. Ceiling light transformers gone from water damage, telephone out of service. Yesterday helped in cleaning up inside and out and then I attended a family function. Still more cleaning up today. Thus I've had a Long Weekend full of opportunities to push myself and find my limitations.

Improvements Post Op + 4 days

1. A more relaxed throat and my voice appears stronger.
2. I can empty the bladder more completely & less frequently.
3. Pronounced reduction in fatigue.
4. Less tremor in arms/hands (can hold a full cup of coffee or drink without spill).
5. Less right leg spasm at night.
6. Waking up refreshed rather than tired.
7. Clearer & quicker thinking.

Folks, I've had MS for many years now and consequently neurological damage has accumulated as well as losses in muscle conditioning & fitness, and this being reflected in reduced physical activities.

Realistically functional losses relating to balance, motor skills and muscle coordination cannot be regained quickly and will need rehabilitation such as appropriate and sustained exercise over time. I intend to stay on Tysabri for the time being in order to control any ongoing inflammation processes.

I'm hoping Prof Thomson will find a solution for the network of collaterals high in the Right IJV. If not I may be stuck with this primary vein abnormality. We'll see in a month's time at my next appointment. I will try to post venogram images tonight for illustration pre and post procedure.

Wishing you all the best tomorrow Daniel!!


Hahahah. Fortunately my area didn't get flooded Adolfo, how were those massive hail balls though? I am very happy for you, and I hope you see more improvements by the day.
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congratulations Adolfo!

Postby nico » Sun Mar 07, 2010 10:57 pm

l am so very happy for you!

Daniel, all the best for tomorrow too. We're all cheering u on! cheers, nico
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Postby elaine » Mon Mar 08, 2010 12:24 am

Aldofo
that's great news hopefully there will be many more improvment's with time.
Good luck Daniel all us aussie's are behind you.
Elaine
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CCSVI

Postby Opera » Mon Mar 08, 2010 1:01 am

Adolfo
Great news. Trust we will receive regular updates and reports of continuing improvements.

All the best to Daniel and the others who have booked in for treatment.
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