Search found 18 matches

by kiwi
Sun Oct 28, 2012 10:55 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2937163

Re: DrSclafani answers some questions

I'm here too. Reading and learning
by kiwi
Tue Dec 07, 2010 12:35 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2937163

Hi Dr Sclafani As one who has been lucky enough to get another procedure soon, should we be asking our IR to go through the left side to check for May Thurner? Are you still of the opinion that cutting balloons shd be used? Any other techniques that you would use that may have changed in the last 6 ...
by kiwi
Wed Dec 01, 2010 8:29 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Baclofen
Replies: 28
Views: 5426

So... the bar of soap, does it have to have the packaging off? Do you have to be touching it?
by kiwi
Wed Dec 01, 2010 10:25 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI and CCVBP
Replies: 4794
Views: 1016045

Thanks Doctor Flanagan. Have sent a copy of his x-rays to you. It is great to have the experts so willing to help us. Very very grateful that you have come to this site. Partway through your book.
Cheers
by kiwi
Tue Nov 30, 2010 11:46 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI and CCVBP
Replies: 4794
Views: 1016045

Husband had first adjustment today. Very gentle as Chiro was a little scared after hearing his history and seeing the x-rays we had had done. Apparently the atlas is twisted and higher than it should be? and wedged up around the occipital? maybe I have this right... Doc Flanaghan, tried to get xrays...
by kiwi
Tue Nov 30, 2010 6:43 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Baclofen
Replies: 28
Views: 5426

My husband used to take it, but stopped as he was told that it increased fatigue, which is a big issue for him. Trying to get off all prescription meds anyway so this was the kicker. Didn't seem to increase the spasticity that he had at the time noticeably, but 18 mths down the track there is defina...
by kiwi
Wed Apr 28, 2010 11:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2937163

Hi Dr Sclafani Thanks for all the time you take answering all our questions. It is much appreciated, I have followed this thread from the beginning, fantastic information for us all. My husband has PPMS, full time in chair. He has been tested and found to have narrowings in veins, LIJV 10mm down to ...
by kiwi
Wed Apr 28, 2010 11:44 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Smaller jugular vein than the other anyone ?
Replies: 15
Views: 8364

When my husband had his tested they found that the left had a maximum diameter of 10mm with a narrowing to 1.7mm and the right a maximum of 6mm with a narrowing to 1.4mm. does anyone know what the normal parameters are? We have gone this alone and feeling our way as we go, not really sure where to g...
by kiwi
Fri Apr 16, 2010 7:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Should I avoid IBT prior to Doppler?
Replies: 1
Views: 1871

My husband has been doing IBT for about 2 months. He had his doppler done on Monday. He was still diagnosed with narrowed jugular veins and query on azygous. Can't say in your case, but in his the narrowing was still visible. Hope you get a good result.
by kiwi
Mon Apr 12, 2010 6:22 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Primary Progressive and accidents
Replies: 34
Views: 12242

Had ultrasound yesterday and both right and left IJV have narrowings. Not sure how much yet, have to wait for the report to be sent to us, however we were told that there are definitely abnormalities in both veins. We were so happy to be told that they was abnormal - seems so wrong to be pleased, bu...
by kiwi
Mon Apr 12, 2010 5:31 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in New Zealand
Replies: 16
Views: 6946

Had the ultrasound done at CRG yesterday. Narrowing found in both right and left internal jugulars in the middle. No more info at this stage. The report is going to get written up and sent to our GP, who happens to be away for the week - so we have to wait ... but we are getting images on CD sent to...
by kiwi
Sun Mar 21, 2010 5:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in New Zealand
Replies: 16
Views: 6946

Sorry didn't answer your question. It is for doppler ultrasound. If stenosis is found we will move straight onto venogram and ballooning, once we get accepted by a surgeon, but the guys at CRG are very encouraging.
by kiwi
Sun Mar 21, 2010 5:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in New Zealand
Replies: 16
Views: 6946

Went to the GP. Chose a GP from our local medical centre who was open to new things. Haven't spoken to the Neuro at all. GP was a bit doubtful about it but said a diagnostic can't hurt, so gave referral. Is keen to get feedback about it. Chch radiology group (CRG) is who we have the test with, appar...
by kiwi
Sun Mar 21, 2010 3:10 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in New Zealand
Replies: 16
Views: 6946

The ball has started rolling in NZ. Already some people have had testing done, and stenosis found and we are going for first test 12/4. Can't wait, So excited!!
by kiwi
Fri Mar 19, 2010 10:56 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI - Aussie Action!
Replies: 851
Views: 252101

@Phil/Brainteaser Can you let me know where/who in NZ is doing the ops/testing. I have had not much luck at all in getting anyone interested
Cheers

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