CCSVI - Aussie Action!

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

Re: mixed feelings

Postby Opera » Fri Mar 12, 2010 7:58 pm

hwebb wrote:am curious to see your videos...but a bit scared too as my procedure is on Wednesday. I was planning to not look at anything during the procedure...and take a sedative if offered. I want to pretend it's not happening. Not sure how successful this approach will be. My family want to come along to the procedure - they think it's a show!

Helen


Good Luck and all the best for Wednesday Helen
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Postby Opera » Fri Mar 12, 2010 10:37 pm

All the best to Downunder and Taxi's wife who will under go the procedure on Wednesday . Good luck once again.
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Postby CureOrBust » Sat Mar 13, 2010 12:20 am

Thank you for uploading your video, and glad to hear it all went so well.
kezzcass wrote:Checked RIJV and there was stenosis at the jugular valve (which was inverted). He ballooned this no probs. Then checked the LIJV and it was almost completely blocked at the inverted valve
The inverted valve, did Dr T discuss with you what would happen there? and ballooning at a valve?

kezzcass wrote:in fact it was an 'anomaly' in that the blood had found a lesser vein to drain to.
I think "Collaterals" to use the common lingo.
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Postby taxi » Sat Mar 13, 2010 1:06 am

hey cure,

katz also has an inverted valve (according to the doppler) and prof. T wasn't fazed, he said they would pull a balloon through it and it would "pop" back into the right direction. i'm not sure that he used the word "pop" but i'm also not sure that he didn't :)

do i remember correctly that you haven't found any specific stenosis in your JVs or azygos? i was thinking about this and nico's results and wondering if you could just come down to melbourne and have the venogram here... seems like they can tell an awful lot more with the wire than they can see in the doppler?

i thought that you might be able to convince prof T to help you... he said to he was happy to do the operation because he didn't want people spending their life savings flying to poland to do something that was so easy to do here. the alfred is the premier medical institution in victoria and they do bazillions of them ("all the time", he said, "especially for transplants").

cheers
mark
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exploratory venogram

Postby hwebb » Sat Mar 13, 2010 3:31 am

my impression, from discussions with prof T, is that the venogram is exploratory surgery..where more analytical info is obtained. If a stenosis is found, he will balloon. If no stenosis is found, at least he's explored those veins internally so has a clear picture of their interior structure.

I wish i understood this earlier. I wouldn't have got so hung up on getting a Haacke protocol MRV and cranial Doppler. At the end of the day, the interventional radiologist doesn't decide what to do until he's done the internal exporation (venogram). Dr Simka says this also in his presentation at the recent CCSVI workshop.

Helen
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Postby Brainteaser » Sat Mar 13, 2010 3:56 am

Thanks to the terrific work of Adolfo and others in Melbourne, I had a consultation with Professor Thomson, this week. He is a very down to earth, easy going medical practitioner, very much in the mould of Professor Zamboni, himself. Prof Tee was very interested to see my venogram and MRV from Poland and the venogram from my Melbourne October procedure. He has arranged to do a venogram on me, April 1 when he'll check me over, check the RJ stent and see if he can do anything further, including my azygos which Prof Zi thought might have a membrane growing over it.

You guys have done well to get Prof Tee involved with CCSVI and Kerri's videos really help to demystify the whole process. One thing people noticed immediately after my op in Poland was that my face was smoother with more colour. Just looking at Kerri's videos before and after her op, am I seeing a healthier complexion?

One aspect of CCSVI in Oz which is important is to make sure that we don't get a situation like in San Francisco where Dr Dake was the only one operating and he got closed down, probably after complaints by neurologists. By getting other medical practitioners involved, this won't happen here. Prof Tee gave me the name of a Sydney IR who will also be able to do procedures. Interestingly, the Melbourne VS who did my October procedure rang me the other day and said that they had set up a committee of Australian and NZ vascular surgeons to advance CCSVI here. It was good to learn that the committee includes doctors who flatly refused to talk to me last September and they hope to bring Prof Zamboni out here soon. So the situation in Oz is starting to look pretty good.

Phil
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Postby kiwi » Sat Mar 13, 2010 1:03 pm

@Brainteaser/Phil That is good news about getting some NZ vascular surgeons on board. Any idea of time frames? Haven't had much luck on this side of the ditch yet getting anyone very interested. It is early days for us as far as getting the word out there, tho I know Muse has been working on people over here for quite some time. Have had great e-mails from Prof T in Melbourne and have followed up on a lead he gave me on Friday for a NZ interventional radiologist in Chch, just waiting for him to get back to me now, and waiting is hard!!
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great advocacy

Postby hwebb » Sat Mar 13, 2010 3:50 pm

this is wonderful Phil. Even though you had your stenosis treated in poland, you have had such a positive influence on the advancement of CCSVI in Australia.

Anyone in Melbourne who has had treatment overseas should touch base with Prof T cause he will likely be able to provide valuable post-operative care.


Helen
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Postby Brainteaser » Sat Mar 13, 2010 7:42 pm

Talking to Prof Thomson and looking at Kerri's operation video my 'gut feeling' of Prof Thomson is that he is very comfortable and confident about the treatment he is performing - he seems like he's done this procedure many times before. More so than the VS in Melbourne and the team in Poland who were finding their way. I'm not criticizing but just making an observation. Everyone needs to start somewhere and in time, many IR's and VS's will be up to speed and helping patients.

My point is to Kiwi that if Prof Tee gave you the name of an IR in Christchurch who could do your procedure, I'd rely on his judgement over any other practitioner at ths point.

Helen - thanks for your thoughts but CCSVI is a joint effort. Thank God for the internet! All the best with your procedure.

Phil
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Postby kezzcass » Sat Mar 13, 2010 10:30 pm

Brainteaser wrote:Thanks to the terrific work of Adolfo and others in Melbourne, I had a consultation with Professor Thomson, this week. He is a very down to earth, easy going medical practitioner, very much in the mould of Professor Zamboni, himself. Prof Tee was very interested to see my venogram and MRV from Poland and the venogram from my Melbourne October procedure. He has arranged to do a venogram on me, April 1 when he'll check me over, check the RJ stent and see if he can do anything further, including my azygos which Prof Zi thought might have a membrane growing over it.

You guys have done well to get Prof Tee involved with CCSVI and Kerri's videos really help to demystify the whole process. One thing people noticed immediately after my op in Poland was that my face was smoother with more colour. Just looking at Kerri's videos before and after her op, am I seeing a healthier complexion?

One aspect of CCSVI in Oz which is important is to make sure that we don't get a situation like in San Francisco where Dr Dake was the only one operating and he got closed down, probably after complaints by neurologists. By getting other medical practitioners involved, this won't happen here. Prof Tee gave me the name of a Sydney IR who will also be able to do procedures. Interestingly, the Melbourne VS who did my October procedure rang me the other day and said that they had set up a committee of Australian and NZ vascular surgeons to advance CCSVI here. It was good to learn that the committee includes doctors who flatly refused to talk to me last September and they hope to bring Prof Zamboni out here soon. So the situation in Oz is starting to look pretty good.

Phil


Hi Phil - that is fantastic what you are saying about a committee. I have had similar concerns about putting too much spotlight on Prof T but he was more than happy for me to 'tell my friends' and clearly knows we are all 'talking.' Every new procedure promotes more discussion and questions for debate which is a good thing.

As for my complexion... not too sure - think it was the better camera I was using!! hahaha. Look forward to hear how you go on April Fools Day! Kerri
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Postby kezzcass » Sat Mar 13, 2010 10:49 pm

Hi Friends,

Just wanted to give you a little update on how I am going three days after procedure. I have had a tender neck (every day I can turn my head a bit better) and discomfort along the vein from the groin but nothing to stop me from going shopping (fatigued after about 1.5 hours which is about my limit normally) or spending time with friends. I have no bruising whatsoever around the groin - that is amazing really. I do have some discomfort when taking in deep breaths but have noticed this has improved.

I definitely have less pressure in the back left side of my head (which I have complained about for years - I will be honest I used to think I had Trigeminal Neuralgia but I suspect this pain was due to the pressure in the left juglar, in time I will know for sure if this pain does not return). This is a positive thing. I have felt clearer in the head in general.

In general I am feeling well and eagerly wait to hear how this week's lot go with Prof T. Thoughts are with you. Kerri
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I'M BACK

Postby avantitech » Sat Mar 13, 2010 11:19 pm

G'day Folks,

My apologies for not replying to PM's or postings, as I was laid out for 3 days/2 nights getting treatment for another deep vein thrombosis.

This is my third leg DVT in 10 years and countless blood pathology tests over the years (and recently), not to mention opinions from haemotology experts, have been unable to find an actual cause for my pre-disposition to blood clots.

In any case I've had the clot completely removed and am on blood thinning medication for a few weeks. The previous clots were initiated in some unknown fashion by the use of a particular anesthetic during surgery and the administration of prednisolone to treat and MS attack. Both were unexpected and idiopathic, certainly peculiar to me and very uncommon.

In short and to be honest I've had a thoroughly unenjoyable time being poked, prodded, punctured, catheterised, cannulalised, and ...vacuumed. However, Prof Thomson removed the clot quickly and expertly and am eternally grateful to him and the Alfred medical services teams.

So of course my friends you will understand when I say that I'am glad to be back home from hospital, I do feel good after rest & refreshments and have bounced straight back.

What's next on the agenda?

Cheers,
..Adolfo

P.S. ...I will reply to all messages shortly
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Postby Opera » Sun Mar 14, 2010 12:07 am

Thanks Kerri and Adolfo for the updates. Really appreciate the time you take to keep us posted.

Wish you continued improvement and speedy recovery.
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trigeminal neuralgia caused by enlarged blood vessel

Postby hwebb » Sun Mar 14, 2010 12:57 am

Hey Kerri,

your pain may well be due to both an enlarged blood vevssel, and trigeminal neuralgia. The two are not necessarily mutually exclusive.

According to papers referenced on Wikipedia:

Several theories exist to explain the possible causes of this pain syndrome. It was once believed that the nerve was compressed in the opening from the inside to the outside of the skull; but newer leading research indicates that it is an enlarged blood vessel - possibly the superior cerebellar artery - compressing or throbbing against the microvasculature of the trigeminal nerve near its connection with the pons. Such a compression can injure the nerve's protective myelin sheath and cause erratic and hyperactive functioning of the nerve. This can lead to pain attacks at the slightest stimulation of any area served by the nerve as well as hinder the nerve's ability to shut off the pain signals after the stimulation ends. This type of injury may rarely be caused by an aneurysm (an outpouching of a blood vessel); by a tumor; by an arachnoid cyst in the cerebellopontine angle[6]; or by a traumatic event such as a car accident or even a tongue piercing.[7]

I get head tightness/pressure and pain too...so it'll be interesting to see if the procedure relieves any of this.

Helen
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Re: trigeminal neuralgia caused by enlarged blood vessel

Postby kezzcass » Sun Mar 14, 2010 1:43 am

hwebb wrote:Hey Kerri,

your pain may well be due to both an enlarged blood vevssel, and trigeminal neuralgia. The two are not necessarily mutually exclusive.

According to papers referenced on Wikipedia:

Several theories exist to explain the possible causes of this pain syndrome. It was once believed that the nerve was compressed in the opening from the inside to the outside of the skull; but newer leading research indicates that it is an enlarged blood vessel - possibly the superior cerebellar artery - compressing or throbbing against the microvasculature of the trigeminal nerve near its connection with the pons. Such a compression can injure the nerve's protective myelin sheath and cause erratic and hyperactive functioning of the nerve. This can lead to pain attacks at the slightest stimulation of any area served by the nerve as well as hinder the nerve's ability to shut off the pain signals after the stimulation ends. This type of injury may rarely be caused by an aneurysm (an outpouching of a blood vessel); by a tumor; by an arachnoid cyst in the cerebellopontine angle[6]; or by a traumatic event such as a car accident or even a tongue piercing.[7]

I get head tightness/pressure and pain too...so it'll be interesting to see if the procedure relieves any of this.

Helen


That's is excellent information, thank you. Kerri :)
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