CCSVI - Aussie Action!

[friday_fc]

Hi All

I am having my venogram this Friday at Edgecliff.

Should it prove that I do in fact have CCSVI, I was hoping someone could PM me the details of anyone doing the angioplasty procedure here in Sydney.

Any information would be greatly appreciated


Hope everyone is well
Sneaky P

I'm confused, the same people told my friend they will do a Duplex Doppler on her. A venogram injects dye and then takes X-rays - is this the external equivalent, if you will, to an angiogram (minus the baloon)?

[Algis]

MRV is 'Magnetic Resonance Venogram' that will make the "map" of your veins. My understanding is that obvious stenosis/blockage/collaterals might be visualized but is not entirely reliable. It should be completed by a TransCranial Doppler. (my MRV was negative, my Doppler is also negative).

Catheter phlebography seems to most suitable examination, because it is 'in' the veins. They then inject dye at certain places to visualize the flow of blood; which is the main concern in CCSVI.

Good luck

[sneakypuss_01]

I'm confused, the same people told my friend they will do a Duplex Doppler on her. A venogram injects dye and then takes X-rays - is this the external equivalent, if you will, to an angiogram (minus the baloon)?

Sorry my bad....I am having the MRV done at Edgecliff on Friday after a negative Doppler exam, which I dont believe was performed correctly.

Algis' explanation of the procedure is spot on

Will keep you posted on my results.

[Nean]

Hi Everyone
It's wonderful to read all your great reports, and it gives me hope that I too will be able to post something positve soon.

I have had MS for 21 years and have been told that I have had SPMS for a few years (I'm not sure how many) by my neuro. I walk short distances with a rollator and have recently acquired a scooter for longer distances. Fatigue is a problem but energy isn't if you get what I mean.

I have had no measureable improvement since my op unfortunately, but feel, that it may be "early days" still.

About a week ago I hurt my back at hydrotherapy so my moving around has been more limited and I have had more spasms(in my back and legs).

I am going for another doppler next week to check my veins. I really hope all is good there and it stays like that!.

Nean

[CureOrBust]

Will keep you posted on my results.

Don't hold your breath, I had it done there a few weeks ago, and have yet to get my results. I think he has sent the scan to the US for their opinion. Which is good, that they are being thorough.

[nico]

Hi Everyone
It's wonderful to read all your great reports, and it gives me hope that I too will be able to post something positve soon.

I have had MS for 21 years and have been told that I have had SPMS for a few years (I'm not sure how many) by my neuro. I walk short distances with a rollator and have recently acquired a scooter for longer distances. Fatigue is a problem but energy isn't if you get what I mean.

I have had no measureable improvement since my op unfortunately, but feel, that it may be "early days" still.

About a week ago I hurt my back at hydrotherapy so my moving around has been more limited and I have had more spasms(in my back and legs).

I am going for another doppler next week to check my veins. I really hope all is good there and it stays like that!.

Nean

nean,

l too have had SPMS for the last few years. l've been in a wheelchair full-time for nearly 2.5 yrs. l had my procedure 12 Mar and, like you, didn't notice any change at all for a good two and a half/three weeks. I have now regained some feeling in my feet. lmprovements for us l guess are jolly slow and probably seem really minimal when compared to some other experiences but hey, it's a start! hang on, buddy, you're not alone. cheers, nico

[lodgernz]

Folks, my friend Frances and I visited Melbourne Radiology last week, where Dr Julie worked her magic and found that Frances does indeed have stenoses in both left and right IJVs as we hoped. We also managed a quick consult with the lovely Prof T before he went overseas, and he was most helpful and supportive.

Our next step is to get treatment for Frances. We won't be posting any info about this anywhere, as I think we can all see the damage that too much publicity has caused to the few practitioners who are on our side.
We need to show some restraint in public fora, to ensure that our means of diagnosing the problem and finding a solution remain out of the public gaze. Basically we have to go underground to avoid spoiling it for everyone else.

Kiwis who suspect they might have CCSVI are welcome to contact me by private message only.

Cheers,
Roger...err...I mean, Agent X

[Opera]

Folks, my friend Frances and I visited Melbourne Radiology last week, where Dr Julie worked her magic and found that Frances does indeed have stenoses in both left and right IJVs as we hoped. We also managed a quick consult with the lovely Prof T before he went overseas, and he was most helpful and supportive.

Our next step is to get treatment for Frances. We won't be posting any info about this anywhere, as I think we can all see the damage that too much publicity has caused to the few practitioners who are on our side.
We need to show some restraint in public fora, to ensure that our means of diagnosing the problem and finding a solution remain out of the public gaze. Basically we have to go underground to avoid spoiling it for everyone else.

Kiwis who suspect they might have CCSVI are welcome to contact me by private message only.

Cheers,
Roger...err...I mean, Agent X

I fully agree that information re the location in which CCSVI treatment is conducted or the names of practitioners who do this should not be posted in the forums as it appears that there is a force that wants to shut it down. If any one wants specific information about where to go for treatment they could request that the information be sent by PM.

[Brainteaser]

Just an update following my treatment 3 weeks ago on 1 April with Prof T -

Prof T ballooned at five points within my two jugular and azygos veins, including within the stent in my right jugular. I had slight soreness in the neck area for a day or so, following the treatment. Then for about the next week I experienced some fairly significant improvements including greater energy, less spasticity, improved balance and an improvement in general well-being. I was able to exercise for about three hours per day, rather than the usual half an hour. However, the most significant improvement I noticed concerned my legs which are normally quite large and swollen. On the Saturday morning (two days after the treatment), the edema had basically gone and my legs were, for the first time that I can remember, quite shapely and athletic. My wife could not believe her eyes and commented that it was the first time she had seen me with ankles! There is no doubt in my mind that the treatment was effective and validates CCSVI as a condition that can be corrected.

However, after the first week, I felt that the effects of the treatment had subsided and many of the original improvements were lost. My legs became swollen again, less energy, greater spasticity and my balance deteriorated. I then had a doppler scan by Julie Gregg last Thursday. She is a terrific find - skilled and personable. She said she had done 60 tests of MSers and all but one showed stenosis. Basically, the results show that I have significant stenonis of both jugular veins which suggests that the veins have collapsed again. Julie's report shows that there is greater than 50% stenosis of both jugular veins. I think that whilst the Prof T treatment was effective for the first week, following this there was probably a return to the status quo of my venous flows which has existed for many years through the collaterals. This would suggest that I either need the angioplasty treatment again or some form of treatment which will keep the jugulars permanently open such as additional stents in both jugulars or surgery of some form.

Phil

[dmccue]

Hi Guys
I am new to this forum but we are looking to see if we can find any assistance for my wife in Gold Coast or Brisbane area.
Our GP after discussion with our Neuro would not even give us a referral to a radiologist or anyone else so if anyone knows who someone who is helpful we are prepared to see them.
Worse case I guess we will have to travel south but surely there is someone in Qld who could do this

Thanks
David

[Downunder]

It appears that I too have re-stenosed. I saw Julie last week and the tests again said >50% stenosis, although the figures are completely different from the first test.
I don't see Prof T for another couple of weeks, so don't know what is to happen next.
Must admit I'm quite happy though, as I know I can only get betterer!! Most of my improvements seem to have held though, so if it was the dreaded placebo, you'd have thought that news of the re-stenoses would have brought about the lack of function!!
Seeing my neuro on Thursday so we'll see what he says!!

Regards Jennifer

[Trickenzie]

I have watched this thread with great interest, cheering all you pioneers madly from the sidelines. Sadly I am here in the most isolated capital city in the world, and my neuro is very cautious and almost dismissive of new treatments that are not well known. I don't really mind that, I WANT my doctor to be cautious, but I also think that CCSVI exists and whether or not it is related to MS, it can surely be treated on separate grounds?

Does anyone know of any vascular surgeons and/or neuros interested in this in Western Australia?

Please contact by pm.

[hwebb]

All,

Seeva posting an exciting update regarding the new Sydney CCSVI Clinic

http://www.thisisms.com/ftopict-11388.html

[Opera]

I have watched this thread with great interest, cheering all you pioneers madly from the sidelines. Sadly I am here in the most isolated capital city in the world, and my neuro is very cautious and almost dismissive of new treatments that are not well known. I don't really mind that, I WANT my doctor to be cautious, but I also think that CCSVI exists and whether or not it is related to MS, it can surely be treated on separate grounds?

Does anyone know of any vascular surgeons and/or neuros interested in this in Western Australia?

Please contact by pm.

Pl see your PM

[Brainteaser]

Hi Jennifer,

The puffy legs seems to be something you and I have in common. For my whole life I thought my legs were 'deformed'. After all, my mother and grandmother had the same. However, now I know that it is just a pooling of blood - and underneath, my legs are not that different from anyone else's. Along with the other changes I experienced for the week after Prof T's treatment, this gives me great and tangible belief in this treatment for the future, as it seems to have with you also. After Poland, I wasn't so sure, because I was #3 and the doctors were very conservative, doing only one stent. Now I know that with more treatment at key venous points to keep the veins open, the positive benefits should be lasting. Good luck to you too.

Phil