Long time lurker...my journey begins Tuesday

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

Re: Long time lurker...my journey begins Tuesday

Postby Cece » Fri Apr 27, 2012 11:21 am

Just saw this and you're probably in recovery or back at the hotel by now! Congrats, tilt! A 20 mm jugular will carry so much flow once that valve is dealt with.
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Re: Long time lurker...my journey begins Tuesday

Postby David1949 » Fri Apr 27, 2012 11:40 am

Best wishes to you Tilt. It seems we have similar jugulars and somewhat similar symptoms. Lets compare war stories when you feel up to it.

Dave
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Fri Apr 27, 2012 1:20 pm

I had a "wow" results experience.

Hadn't felt the bottom of my left foot in years, no more tingling or numbness.
Tingling in my hands is gone.
My left leg was essentially a sack of potatoes for the past 6 years and I went in with a cane. I walked out without my cane. First negative Rhomberg in 6 years. Balance is back.

Other symptoms will take time to evaluate, but my mother breaking down into tears when I walked out says it all.


Let's hope it stays, or lasts as long as possible. I am tired and need some rest. Will update and post some vids later.

Thanks for the support folks :)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Fri Apr 27, 2012 1:22 pm

Donnchadh wrote:
tiltawhirl wrote:OK folks! I met with Dr Sclafani today for my pre-procedure briefing and Neuro bashing session. God that was therapeutic! ;)

my left Jugular is 20mm(like Daves!) and my right was non-existent. Malformed valve that is elongated in the left and not closing but just flapping in the breeze.

I am on the table at 9am and hope that all goes well. I shall report my progress when possible.

Thanks for the support guys and gals!

tilt
(having trouble sleeping..gee I wonder why?)



Are you saying you do not have a right IJV?

Donnchadh


It was not visible on the doppler ultrasound, but when they went in to do the venogram they found it to be 4mm at it's widest. He used a very long ballon to stretch it out to 6mm and it did improve flow, but if there was anything he would think about retreating it would be that one, but I was in agony and he didn't want to be too drastic.

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Fri Apr 27, 2012 3:08 pm

Fantastic news, tilt. Just fantastic.
You can wish for even more than the improvements staying for as long as possible: it might get even better. (I had wow results, and three months later I improved more, and eleven months later, I improved more.)
If anything fades, it could be due to restenosis, and they know how to treat that.
And your mother gets to be a part of this and see you walking without the cane!
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Re: Long time lurker...my journey begins Tuesday

Postby David1949 » Fri Apr 27, 2012 9:01 pm

That's great news Tilt. I hope you continue to improve.

Dave
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Re: Long time lurker...my journey begins Tuesday

Postby Robnl » Tue May 01, 2012 3:28 am

Its great, so many placebos :lol: :lol:

I'm very happy for you!!
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Re: Long time lurker...my journey begins Tuesday

Postby Robnl » Tue May 01, 2012 5:06 am

saw your video, fantastic
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Tue May 01, 2012 10:57 am

Robnl wrote:saw your video, fantastic



Thanks Robnl! I am posting the link to the video here as a wrap up to this thread. Full circle. From not knowing if I had CCSVI, to resolution.

A great big middle finger to the Neuros who refuse to look at cases and outcomes without relegating them to the placebo farm.

Thanks everybody for your support and input over the past couple months! It's still shocking to think that just 4 days ago I had an EDSS of 5. It is now .5. As I gain muscle strength back and coordination in my left side again it should become a zero.

Before and after video
http://www.youtube.com/watch?v=guEgfwYbcNo&feature=youtu.be

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Tue May 01, 2012 12:25 pm

tiltawhirl wrote: It's still shocking to think that just 4 days ago I had an EDSS of 5. It is now .5.

Are you serious.
Wow.
So not everyone gets the best-outcome response. What is different about your CCSVI or your treatment or your MS that you had such a response. Getting fully treated? Having a really big jugular that, once fully opened, can carry a lot of flow? (Both my jugulars combined can't carry as much outflow as a 20 mm vein can carry.) Having had damaged neurons but not destroyed neurons, so that when flow was restored, the neurons recover?

I wish we could predict when a patient is going into the procedure what outcome they can expect. It would make the decision a lot easier for some people.

Amazing video.
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Re: Long time lurker...my journey begins Tuesday

Postby mazza » Tue May 01, 2012 5:08 pm

Yes, absolutely amazing.

I have been sitting on the fence since I joined this forum but am getting closer to jumping off. I have similar left sided issues to a lesser extent. The fear of maybe making things worse holds me back.

Please keep us posted on your progress.
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Re: Long time lurker...my journey begins Tuesday

Postby David1949 » Tue May 01, 2012 5:17 pm

Amazing Tiltawhirl!

Congratulations to you and Dr. Sclafani!
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Re: Long time lurker...my journey begins Tuesday

Postby allynz » Wed May 02, 2012 2:00 am

Congratulations - sounds like an amazing result.

I too am a long time lurker. Last night my husband was officially diagnosed with PPMS. First suspicions in 2003 but we've both been in denial ever since but finally sought an official result. As expected the neuro (best in the country) stated categorically that CCSVI was a croc but we are not put off. My husband seems to have all the classic symptoms but my question for all you 'experts' is about lesions on the brain vs the spine, the neuro says the spinal ones are our real problem - do you think it makes a difference in regards to CCSVI. Has anyone had any experience with Dr Varcoe in Sydney?
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Re: Long time lurker...my journey begins Tuesday

Postby DougL » Wed May 02, 2012 5:06 am

allynz wrote:...lesions on the brain vs the spine, the neuro says the spinal ones are our real problem - do you think it makes a difference in regards to CCSVI.

i am by no means an "expert". i am just a guy who loves a pwCCSVI. so this is just my opinion about crocs.

fixing CCSVI will not fix the lesions on the brain or the spine so i don't think it makes a difference.

the hope is by fixing CCSVI you allow the body to heal the lesions. hours, days, months, years???

if not, then the hope is by fixing CSSVI you don't get any new lesions and the ones you already have don't get worse.

the last hope is that by fixing CCSVI, you don't cause any injuries and thus cause more problems. that is why i am a firm supporter of the thread Gold Standard here at TIMS.

i would take these words of hope to your neuro and ask what his hope is for the drugs he will likely suggest. i am not saying you shouldn't follow his advice about taking the drugs. just asking his opinion about crocs.
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Re: Long time lurker...my journey begins Tuesday

Postby elliberato » Wed May 02, 2012 6:48 am

another interesting aspect of this wonderful condition to further screw with this board is the fact that lesion load does not correlate directly with disability.
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