yes, I know that the left entry is about more than just checking for May-Thurner. It also checks the status of the lumbar veins. Lumbar vein irregularities are not treatable at the moment.
Just do a page search on "May-Thurner", using the link I provided. Unfortunately, I couldn't seem to link to the exact entry on the facebook page...just the page itself. I'm pretty new to facebook - maybe I'm not working with is correctly.
CCSVI - Aussie Action!
So 2 weeks since my wife had the treatment at St Vincents. One side of the jugular was quite blocked as we seen at Newcastle where we got the referral. Ballooned and now flowing well. My wife was a bit sore for a couple of days but as the pain reduced we also noticed quite an improvement.
She is no longer sleeping half the day which she has done for years, has a lot more energy and is bright until we go to bed instead of half comatosed. Her mother and sister commented last night that she is a lot more coherent and on the ball, big difference. She actually managed to take the garbage bags out of the bins in the kitchen, first time in about 3 years yesterday which amazed her .. so some strength is returning.
So we are very lucky, she was going down hill rapidly from before Christmas and we were fortunate to get in for treatment which I found out about thru this forum. Now the tide has turned and she is the best we have seen her in years.
Both specialists were fantastic.
She is no longer sleeping half the day which she has done for years, has a lot more energy and is bright until we go to bed instead of half comatosed. Her mother and sister commented last night that she is a lot more coherent and on the ball, big difference. She actually managed to take the garbage bags out of the bins in the kitchen, first time in about 3 years yesterday which amazed her .. so some strength is returning.
So we are very lucky, she was going down hill rapidly from before Christmas and we were fortunate to get in for treatment which I found out about thru this forum. Now the tide has turned and she is the best we have seen her in years.
Both specialists were fantastic.
RE procedure at stvincence sydney
HI member this is very good news.CONGRATULATION. I had the same
balooned my both jugular veins at st vincene hospital on MAY.But no improments at all. same for my other friends those had the procedure, your improvements very good news for us. we all going back to newcastle for recheck our veins. if found blocked again we have to go for procedure once more.please let newcastle DR. PAUL knows your improments so he can tell us more about your improments. what kind of M.S you have and how long you having your M.S. please let us know more abut your conditions and the improments. we all very gratefull to you.
we are the first trail M.S people for DR. PAUL and DR. BESTER.
REGARDS
seeva :roll:
balooned my both jugular veins at st vincene hospital on MAY.But no improments at all. same for my other friends those had the procedure, your improvements very good news for us. we all going back to newcastle for recheck our veins. if found blocked again we have to go for procedure once more.please let newcastle DR. PAUL knows your improments so he can tell us more about your improments. what kind of M.S you have and how long you having your M.S. please let us know more abut your conditions and the improments. we all very gratefull to you.
we are the first trail M.S people for DR. PAUL and DR. BESTER.
REGARDS
seeva :roll:
Re: RE procedure at stvincence sydney
Seeva,seeva wrote:what kind of M.S you have and how long you having your M.S. please let us know more abut your conditions and the improments. we all very gratefull to you.
we are the first trail M.S people for DR. PAUL and DR. BESTER.
REGARDS
seeva
firstly the MS'er is my wife .. has had MS diagnosed for nearly 15 years but has had it before then. We have care 365 days a week to help her in the mornings. She is under Susan H at Liverpool and has been on Betaferon and now Avonex for a long time. Is progressive and on a urine bag for quite a few years now, ended up with spasticity with one foot which turned to the extent was wheel chair bound. Went thru botox treatment which helped a bit a couple of times but in the end we hit a brick wall. We then tried an operation to straighten it which was very successful. Has a brace like the old polio ones now and with her walker can move around the house, uses a scooter outside of the house. Also got misdiagnosed for months with appendix issues and it actually burst in hospital, was touch and go for 5 days but pulled thru and then we had 5 months rehab at Camden hospital which was successful (they are very good there).
She had very little strength and slept a lot on and off during the day. Evenings the worst with not much energy and slurred speech and poor thinking. Late last year started to get worst, quality of life was getting quite poor. Her sister (a nurse) heard about CCSVI and I researched it, used this forum to find Paul and saw him just after Easter. Was very clear on the scan the difference between sides with the jugulars. Professor Bester did the ballooning and the difference is very marked. She is bright, a lot more active and back to a normal sleep pattern. Its like somebody let the brain start functioning again, instead of it running on 50% or less ..
Not sure that this will help you .. but our case was very clear and obviously the unblocking was both accessible and successful. How long it stays unblocked worries me but not much I can do ...
Its sad that it didn't work for you and I hope Paul can help identify why, I was very impressed with him but as I learnt a long time ago, there is a lot we don't know .. at least with this treatment its physical, you can see and treat it and then review it.
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hwebb
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helen - 2nd procedure
Hi all,
just thought I'd post an update, now I've had my second liberation procedure. My left jugular restenosed after the first procedure, but my azygos stayed open. So yesterday's procedure focused on re-opening my left jugular.
It all went smoothly, and was so unlike the first procedure....where there was major pain around my jugular bulb/transverse sinus area. This time, they used more x-ray angles (moving the x-ray machine), and tilted the operating table to more angles too. I was being x-rayed at a 30 degree angle at one stage. The operating table has a shelf you can stand on at the bottom.
They entered through my left side, checked for May-Thurner syndrome...could see my azygos was still performing well after the last angioplasty
. They reballooned my left jugular, and used longer balloons, which were a different brand. They revisited the left jugular several times as it kept re-closing. Finally, it stayed open (hope it keeps open).
No tenderness in my head like last time (everytime I turned my head left or right last time, it felt raw). So far...no signs of relapse (I relapsed straight away last time). I was given heparin during the procedure several times, and am on baby asprin for the next month or so. Prof T supervised, but his skillful protege Dr P. (also a qualified radiologist) did the whole procedure. It's good to see they are scaling up with their staff, and can keep providing this procedure all year as they have several specialists performing it now.
Afterwards, I had warm hands, rosy cheeks, and more sensation in my lips (the right corner had gone numb after I restenosed last time). Even this big blue vein running down my left cheek has subsided. I still have a tight section on my left scalp though - which concerns me. I'll post again in a few weeks time.
Helen
just thought I'd post an update, now I've had my second liberation procedure. My left jugular restenosed after the first procedure, but my azygos stayed open. So yesterday's procedure focused on re-opening my left jugular.
It all went smoothly, and was so unlike the first procedure....where there was major pain around my jugular bulb/transverse sinus area. This time, they used more x-ray angles (moving the x-ray machine), and tilted the operating table to more angles too. I was being x-rayed at a 30 degree angle at one stage. The operating table has a shelf you can stand on at the bottom.
They entered through my left side, checked for May-Thurner syndrome...could see my azygos was still performing well after the last angioplasty
. They reballooned my left jugular, and used longer balloons, which were a different brand. They revisited the left jugular several times as it kept re-closing. Finally, it stayed open (hope it keeps open). No tenderness in my head like last time (everytime I turned my head left or right last time, it felt raw). So far...no signs of relapse (I relapsed straight away last time). I was given heparin during the procedure several times, and am on baby asprin for the next month or so. Prof T supervised, but his skillful protege Dr P. (also a qualified radiologist) did the whole procedure. It's good to see they are scaling up with their staff, and can keep providing this procedure all year as they have several specialists performing it now.
Afterwards, I had warm hands, rosy cheeks, and more sensation in my lips (the right corner had gone numb after I restenosed last time). Even this big blue vein running down my left cheek has subsided. I still have a tight section on my left scalp though - which concerns me. I'll post again in a few weeks time.
Helen
Second Procedure
Helen,
Thanks very much for the update. Hope everything goes well for you.
Thanks very much for the update. Hope everything goes well for you.
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Brainteaser
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Well done on your second treatment Helen - and thanks for the info on May-Thurmer. MT sure sounds like me - big legs, spinal lesion, PPMS, but why hasn't anyone picked it in the past?
Your second treatment included a check for MT. How did they do this, do you think they did the check satisfactorily and what was the outcome?
I see the CCSVIhusband thread discusses a 4.5 hour check of many veins. Could we be heading the same way?
Phil
Your second treatment included a check for MT. How did they do this, do you think they did the check satisfactorily and what was the outcome?
I see the CCSVIhusband thread discusses a 4.5 hour check of many veins. Could we be heading the same way?
Phil
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hwebb
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- Location: Melbourne, Australia
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my impression
Hi Phil,
Prof T has diagnosed and treated May-Thurner syndrome (iliac vein compression syndrome...compressed by iliac artery ...affects left leg) often over the years. He's also treated other vascular abnormalities, including one called the "nutcracker" (renal vein caught between the aorta and the superior mesenteric artery).
Anyway, Prof T indicated that May-Thurner can be imaged using a right-entry. I suspect that treatment would be preferred using a left-entry...but I'm not sure about this. They possibly did a left-entry on me just to comply with the protocol Zamboni has recommended....or maybe just to humor me?? Anyway, given Prof T's experience, I do believe he knew what he was looking for. He took 5-10 minutes at the end of the procedure to pop down "south" and check my iliac had no irregularity. Dr P. did the earlier part of the procedure, with minimal advice from Prof T (he didn't need much advice, as is a qualified radiologist also).
My second procedure took about twice as long as the first...even though they knew just where they were the "problem spot" was....and had more experience treating MSers. They still checked my right vein, though they'd been there once before. An MRV showed a suspicious area on the right...which looked OK in the first venogram. They check it more thoroughly the second time (tilting x-ray angle...tilting bed with catheter still in me and x-ray on me). Was nothing unusual there. They also revisited my azygos, which was ballooned last time. Blood was still flowing freely here. The left problem jugular vein was revisited several times on the second procedure...to make sure it was staying open. Even during the second procedure, it needed several balloon-attempts.
I get the feeling that the team are open-minded, talk to other experts in the world, and are evolving their treatment as more information comes to hand. Certainly, whenever I come across an interesting paper...I email it over to them (with an executive summary - I do the same for Julie at Melb Rad.). They spend long hrs performing the diagnosis/treatment - I doubt they get much time to surf the net!
Helen
Prof T has diagnosed and treated May-Thurner syndrome (iliac vein compression syndrome...compressed by iliac artery ...affects left leg) often over the years. He's also treated other vascular abnormalities, including one called the "nutcracker" (renal vein caught between the aorta and the superior mesenteric artery).
Anyway, Prof T indicated that May-Thurner can be imaged using a right-entry. I suspect that treatment would be preferred using a left-entry...but I'm not sure about this. They possibly did a left-entry on me just to comply with the protocol Zamboni has recommended....or maybe just to humor me?? Anyway, given Prof T's experience, I do believe he knew what he was looking for. He took 5-10 minutes at the end of the procedure to pop down "south" and check my iliac had no irregularity. Dr P. did the earlier part of the procedure, with minimal advice from Prof T (he didn't need much advice, as is a qualified radiologist also).
My second procedure took about twice as long as the first...even though they knew just where they were the "problem spot" was....and had more experience treating MSers. They still checked my right vein, though they'd been there once before. An MRV showed a suspicious area on the right...which looked OK in the first venogram. They check it more thoroughly the second time (tilting x-ray angle...tilting bed with catheter still in me and x-ray on me). Was nothing unusual there. They also revisited my azygos, which was ballooned last time. Blood was still flowing freely here. The left problem jugular vein was revisited several times on the second procedure...to make sure it was staying open. Even during the second procedure, it needed several balloon-attempts.
I get the feeling that the team are open-minded, talk to other experts in the world, and are evolving their treatment as more information comes to hand. Certainly, whenever I come across an interesting paper...I email it over to them (with an executive summary - I do the same for Julie at Melb Rad.). They spend long hrs performing the diagnosis/treatment - I doubt they get much time to surf the net!
Helen
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hwebb
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maybe no correlation?
BTW - prof T has not found May-Thurner in any MSer before (not now...and not in his history of treating people). However, he reckons he may as well check for it while you're having a venogram. Really doesn't take much extra time, and the wire is already in you!
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CureOrBust
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taxi
- Family Member
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hey everyone! long time no see.
Just thought i'd pop in and give you an update. my wife Katz is doing really well, recently had a MRV to check for restenosis (after a confusing report from Melbourne Radiology) and it's all good news. The fatigue is still gone (as much as possible for someone currently travelling abroad with a toddler!) and Katz and my life has improved immeasurably. her vision hasn't returned in her eye and her arm is still not right, but some days it gets better which is probably a good sign.
Cure - awesome news! you have had so many problems getting this far. so glad I happened to log in to see that you got an appointment.
Anyway - I also wanted to say thanks once again for everyone's support and for the existence of this forum.
cheers
Mark
Just thought i'd pop in and give you an update. my wife Katz is doing really well, recently had a MRV to check for restenosis (after a confusing report from Melbourne Radiology) and it's all good news. The fatigue is still gone (as much as possible for someone currently travelling abroad with a toddler!) and Katz and my life has improved immeasurably. her vision hasn't returned in her eye and her arm is still not right, but some days it gets better which is probably a good sign.
Cure - awesome news! you have had so many problems getting this far. so glad I happened to log in to see that you got an appointment.
Anyway - I also wanted to say thanks once again for everyone's support and for the existence of this forum.
cheers
Mark
