CCSVI - Aussie Action!

[elaine]

Hey Adolfo
I don't know what i can do, but i am more than happy to help with the fundraising.
cheers Elaine

[hwebb]

Marigoldrobyn,

I'm glad to hear the cutting ballon is being used in Melbourne now. I suspect they'll use it on me in my next procedure.

hwebb

[Opera]

Adolfo/Kerri

Thanks for sharing information and good luck.

Re fund raising, any thoughts of having a paypal account on the forum for any one wanting to contribute towards fund raising. My understanding is that the fundraising is specifically towards assisting with the purchase of equipment in the Melbourne Hospital. Is that correct?

[hwebb]

that may be a good idea (Paypal account on TIMS, or the facebook site). If there are CCSVI pamphlets being handed out at the MS Walk in Melbourne, we could include a reference to where donations can be made.
One thing I reckon, we need a list of email addresses of Aussies interested in ccsvi. That would be one good way to get info to them - as not everyone logs on to Facebook or TIMS. Need somewhere people can register their email addresses.

[Val1964]

Hi Everyone,
I don't mean to sound ignorant but what is & does the cutting balloon do ?
Val

[Lyon]

.

[Val1964]

Thanks for that lyon, because I will be having my procedure done again maybe they will use that?
val

[Lyon]

.

[Val1964]

thanks for that but I see Prof. T I'll ask him
val

[hwebb]

Thought I’d share a recent experience with my friends at TIMS…which may also serve as an idea of how to raise funds for extra equipment at our favourite CCSVI treatment venue. Let’s call it hospital 1 ;)

Last time I went to my city-based neuro (at hospital 2), he requested I arrange an MRI so he can monitor my lesion load. As this will be the second MS- MRI I’ve had in 6 months since I was diagnosed, and I need my brain and spine imaged, I asked him if he knew of a clinic which bulk-billed the MRI service with a specialist referral. He said he thought there was one in Thomastown...which would be hard for me to get to as my license is temporarily suspended until my occupational therapist is convinced I am able to drive since I’ve been diagnosed with MS. Anyway, the neuro wrote an MRI referral for his preferred clinic (associated with the hospital he practices at)….and said it would cost only ~$150.

I made an appointment at his preferred clinic. When the time came closer, they called to confirm I would still be coming. I clarified the out-of-pocket expense. The said $350. I cancelled the appointment, and called the radiology department of my new favourite hospital…hospital 2…where they treat CCSVI and have a “no out of pocket expense” policy on all services. They could do my MS-MRI, and bulk bill. Great – I’m booked in.

While I’m letting my fingers do the walking…I call the MS Society and ask for advice as to how to get neurological treatment without it costing me an arm and a leg. I don’t see why I should pay top dollar for a specialist who didn’t know the name Zamboni until I told him. They were very informative. They said “go public” – you can see the same doctor, with no out of pocket expense. Sounds OK – so that’s what I’ve done. Just saved myself another $220, which I was shelling out periodically.

I dropped into the MS Clinic at hospital 2 to make my public appointment, and bumped into my neuro. He seemed agitated to hear I’ve gone public , and even more agitated to hear that hospital 1 has lost an MRI booking. Turns out they really could bulk bill – just he told me they couldn’t. So now they’ve lost a private MRI booking…and a public MRI booking too. They would rather have the public booking than let it go to another hospital.

The moral of the story – if you want to save yourself the recurring expense of a minimum of $570...follow my lead. I think I’ll donate this amount to the fundraiser going on at my favourite hospital ;)

[loulou]

i rang the melbourne clinic yesterday and the receptionist started talking about MRI when i said i wanted my azygous checked as well.
Surely she meant an MRV ?
By the way could somebody whose had imaging done in melbourne
and is wheelchair bound give me ideas about how you walk the 10 steps
to the table cos according to the receptionist no wheelchairs are
allowed in the MRI/MRV?room????
Thanks
loulou
ps id like to hear from H webb about her post proceedure

[nico]

i rang the melbourne clinic yesterday and the receptionist started talking about MRI when i said i wanted my azygous checked as well.
Surely she meant an MRV ?
By the way could somebody whose had imaging done in melbourne
and is wheelchair bound give me ideas about how you walk the 10 steps
to the table cos according to the receptionist no wheelchairs are
allowed in the MRI/MRV?room????
Thanks
loulou
ps id like to hear from H webb about her post proceedure

hi loulou,

l'm in a wheelchair and was told three times l couldn't have an MRV if l couldn't walk to the machine (at the Melb Rad Clinic). l asked them to repeat it 3 times because, quite frankly, l found the attitude of the woman (not Julie, she's really nice) who said this amazingly rude and dismissive. Someone, at some point, will undoubtedly sue if they persist with this unfortunate behaviour.

I discussed having an MRV with prof T and he said it was expensive and unnecessary as this scan only looks at the head, neck and upper chest, not the azygos. These areas are all explored during the ballooning procedure. l'll throw my oar in and suggest that a Doppler is an effective (in the right hands) indication of bloodflow only and the most accurate information is obtained during the actual procedure. l hope this helps!

cheers, nico[/b]

[hwebb]

Hi loulou,
I'll chime in here. I had an MRV done at Symbion Imaging, before I met Prof T. The procedure was not the full Haacke procedure, but I did get to see what my veins look like, and a radiology report stting my blockage was at the junction of the left internal jugular, mand transverse sinus. I then met prof t...who said MRV is udsually a bit of a waste of time - the venogram will give the best info (during a balloon procedure). I guess I'd say to most people "save your money"...but in my instance, knowing what my veins look like helped me and my family understand the problem better. The venogram indicated the same info as my MRV radiologist did - but also indicated my azygos was narrowed.

Thanks for asking about how I've gone post-procedure. A mixed bag for me. I felt good for a few days...cog fog lifted, pressure in my head gone, thinking sharply, warm fingers, toes and lips...rosy cheeks and chest, huge increase in energy, vertigo and nausea gone, eyesight sharper. My nasal sinus also cleared...I previosuly suffered from chronic sinus infections (on one side only). But many of these effects went away swiftly, and i relapsed after a week. Doppler confirmed my jugular had completely restenosed. I haven't been posting updates as I thought my veinous deformity is a bit irregular, and it's not that surprising I relapsed quickly. Don't want to put others off this valuable treatment.

I suspect my azygos is still performing OK though, as not all my previous symptoms returned. In particular, still no sinus infections, and no waking up each night at 3am with nausea and dead arms. So I can finally sleep. A big benefit for me - I was so tired.

I'm convinced that if my jugular is opened again, I'll experience improvements again. My jugular is extremely narrow, so any minor contraction is effectively a blockage. The good doc feels it's worth pursuing

Helen

[Val1964]

Helen,
I am so glad you wrote that because that is me too ,i am gonna have another procedure. My gp & husband don't beleive this procedure works I told them I know it does.
Val

[Algis]

about how you walk the 10 steps
to the table cos according to the receptionist no wheelchairs are
allowed in the MRI/MRV?room????

How would they give an MRI/MRV to an unconscious person? this is plain non-sense... I am entirely non-ambulant; I cant even do the transfer chair/bed alone...

They have beds in the service that can go in the room; and they transfer you first from your w/c to that bed, then bed to bed in the MRI room... Simple enough?

That is an hospital/clinic - you're most likely to see sick people in there...