Those with positive results face significant challenges

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

Those with positive results face significant challenges

Postby tiltawhirl » Tue Jun 12, 2012 5:28 pm

Well the last couple of months have been interesting, to say the least.
To suggest I got anything other than my 'old' life back completely wouldn't be true. Yet this outcome has significant challenges.

For example, I have been wanting to get my pilots license. That dream got shelved a decade ago with a number of other dreams that simply wouldn't be physically possible. Progressive forms of MS are recognized by Transport Canada and rule me 'unfit to fly'.

Now I am left with zero symptoms of the disease I have been diagnosed with yet at the same time, the 'medical baggage' still languishes under the heat-lamp of life for all to see.

What does one do now that they no longer have ANY of those symptoms, yet the very procedure that has fixed them is not recognized in Canada?

Am I cured? Certainly the symptoms have dissappeared very quickly after the procedure. How will this status be evaluated by both my Neuro and the medical community?(I can't WAIT to see the look on his face next visit actually...I slinked off to the U.S. unbeknownst to him and his ilk.)

What options do Neuros have with people like me? The way I see it he will either have to admit the condition exists, and correcting it has fixed the issues. Secondarily he can say he made a mistake(Fat fucking chance :lol:) and the diagnosis should have been RRMS and I am now in remission.

I would be interested in hearing others thoughts on this matter.


tilt
Last edited by tiltawhirl on Thu Jun 14, 2012 5:45 pm, edited 1 time in total.
...and I for one, welcome our new Neurologist overlords!

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Re: Those with positive results face significant challanges

Postby Cece » Tue Jun 12, 2012 6:23 pm

If you appear to be in remission (and dramatically in remission, so it's not just a little bit that can be fudged over), I think you can make a case for the diagnosis to be changed either to relapsing remitting or to progressive remissing. It will depend on the neuro whether he'll be reasonable or not!

I remember early on, a gentleman who had experienced a remarkable result after venoplasty ended up having his disability social security income jeopardized.

RR and SP and PP are clinical ways of describing the disease course but we have no descriptions of the disease course post-venoplasty. There's RR with moderate, mild or no improvements; SP with moderate, mild, or no improvements; and PP with moderate, mild or no improvements. And CIS with moderate, mild or no improvements. If I'm in the "RR with moderate (wow) improvements" category, then that affects my future MS disease course differently than someone with RR with no improvements. The wow improvements themselves indicate that I may experience continued healing due to the better oxygenation and blood flow. This might be off track from the topic you posted but if your disease course is now "PP with wow improvements," that is certainly different than "RR with untreated CCSVI" which is what we're proposing your neurologist may re-categorize you.

Keep us posted about the pilot's license, I hope you get it.
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Re: Those with positive results face significant challanges

Postby 1eye » Tue Jun 12, 2012 8:52 pm

That is something everyone who once had a diagnosis of "MS", making them part of the underclass, will have to face when they are in what seems like a permanent remission. How long before it is declared by the world a remission, and not placebo? How long after that that the remission is considered permanent?

I never had a sudden attack when I was driving. Mine all came after sleep, except the Sept. 11 one. It was a worsening of my vision. I was sitting at my desk. If it had been bad enough, I could not have driven home. I guess we might ask people who have had improvements and then lost them if they have had any sudden, disabling attacks since then. I was already "SP", and didn't. It lasted over a year. Some symptoms got better and still are. I never got my walking back but I believe I can still drive, though not allowed to.

No, the people who have been treated without the blessings of their governments, insurance companies and doctor's associations, will still be considered sick. Even if we are declared RR, the threat of a relapse will not be considered gone. I have relapsed, but not suddenly at all, since I lost control of my left toes, in about 2004. They haven't returned my license, even though with my arms I lift 15 lb dumbbells, with my hands I play bad piano, with my legs I ride a tricycle fast enough to crash badly if I ever hit anyone (haven't), and my vision is not problematic.

I probably could get it back, but the test costs $1000. Not at all like the first time I got it.
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Re: Those with positive results face significant challanges

Postby jillMEnz » Thu Jun 14, 2012 3:59 am

Tilt,
It sure is a bizairre position you are in.
With ME we are told by the shrinks that CBT and graded exercise will cure us. Like hell! So in a weird way, I could get an all clear - despite disabling fatigue that my own brother wouldn't employ me because of the dumb cogfog mistakes I make.
You guys have the "respectability" of the diagnosis - but its gonna dog you forever because its been termed incurable - despite your experience. Until the neurologists are no board with CCSVI , I don't see things changing . It seems cruel that your "potential" is decided by some burk who doesn't even know you.
Strange times for you mate. Try not to dwell on it. But it is an interesting philosophical debate to be had = if only the neuro had the decency to debate it with you. I doubt that. Neuro are the speciality Al hates the most. He always says , they are the cop out speciality. The "sorry can't do anything for you " lot.
Let us know how you get on.
Wonderful to hear you doin so well.
Lara a nd husband Jon are coming over for treatment with Sal. I've told her to PM you if she has time. We are awaiting getting a MR venogram hopefully here at a facility in Auckland b4 making the huge decision. I know IVUS better - but having insurance here means easier to get a good indication anyways.

love as alway, Jill & Al
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Re: Those with positive results face significant challanges

Postby FLJhawk » Thu Jun 14, 2012 9:15 am

In the US, one with MS can obtain a Special Issuance medical certificate if their the neurologist writes a letter that states you have been stable for some period of time (one year?). You have to reapply each year but, if you remain stable, you can keep the certificate.

Also, if you have never had a medical certificate revoked, you can fly Light Sport with a drivers license.

I don't know how the Canadian system differs from the US system in this regards, but check with a local flight school to see what your options might be.
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Re: Those with positive results face significant challenges

Postby David1949 » Fri Jun 15, 2012 6:38 pm

"Those with positive results face significant challenges"

Almost makes me glad I didn't have positive results... almost. :-(

Tilt I'm glad you're having such good results.
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Re: Those with positive results face significant challenges

Postby drsclafani » Sun Jun 17, 2012 8:20 am

David1949 wrote:"Those with positive results face significant challenges"

Almost makes me glad I didn't have positive results... almost. :-(

Tilt I'm glad you're having such good results.



Tilt asked me these questions less than a month after treatment. I advised him against flying because i do not think one month is sufficient to see how svi will progress, although tilt is on the far end of the curve in terms of response.

We need to be cautious as we gloriously ask these new wonderful questions

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Re: Those with positive results face significant challenges

Postby frodo » Sun Jun 17, 2012 10:53 am

tiltawhirl wrote:
For example, I have been wanting to get my pilots license. That dream got shelved a decade ago with a number of other dreams that simply wouldn't be physically possible. Progressive forms of MS are recognized by Transport Canada and rule me 'unfit to fly'.

Now I am left with zero symptoms of the disease I have been diagnosed with yet at the same time, the 'medical baggage' still languishes under the heat-lamp of life for all to see.

What does one do now that they no longer have ANY of those symptoms, yet the very procedure that has fixed them is not recognized in Canada?


Try to get rid of the MS label.

The current standard says that CCSVI does not fix MS problems and your symptoms have clearly dissapeared. Therefore you could try to explain that you never had MS, but a malformed vein instead. Therefore your MS diagnosis was a misdiagnosis.

This way the door to Transport Canada is open for you again.

You could even try to demand your clinic and claim money for the misdiganosis. It can be funny to see neurologists trying to explain in a court the opposite views that they hold in their clinics.
Last edited by frodo on Mon Jun 18, 2012 1:59 pm, edited 2 times in total.
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Re: Those with positive results face significant challenges

Postby tiltawhirl » Sun Jun 17, 2012 10:21 pm

drsclafani wrote:

Tilt asked me these questions less than a month after treatment. I advised him against flying because i do not think one month is sufficient to see how svi will progress, although tilt is on the far end of the curve in terms of response.

We need to be cautious as we gloriously ask these new wonderful questions

DRS


Just to clarify: I actually asked on June 12th, 2012. Nearly 2 months post-procedure. It's important to note also that there is a waiting period before the test of another 8-10 weeks so by the time I would be tested it would be close to 5 months post procedure.

That said, I agree about the waiting, Dr S. :)

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: Those with positive results face significant challenges

Postby Cece » Mon Jun 18, 2012 8:07 am

I think people with 'wow' results are the ones who keep on getting more. So waiting may bring even more improvements.
Future looks bright...
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Re: Those with positive results face significant challenges

Postby mandamurr81 » Thu Jun 28, 2012 9:28 am

Wow. I am scheduled to go for the procedure at Synergy Health Concepts in Californis, July 11th. I REALLY hope I have this kind of problem after! lol. Right now I have a limp and foot drop, fatigue, poor balance, cog fog etc. I am not expecting any improvement in walking, since I have had problems with that for 2 years, but after watching your video, I will be super happy if there is even slight improvement in that area.

Do you mind if I ask how long you were limping before? I am just assumed that I must have nerve damage by now because it has been so long. Initially I had an intermittent limp starting almost 6 years ago, but now it has been a pretty steady gait disturbance for about 2 years.
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Re: Those with positive results face significant challenges

Postby tiltawhirl » Thu Jun 28, 2012 11:25 pm

mandamurr81 wrote:Do you mind if I ask how long you were limping before? I am just assumed that I must have nerve damage by now because it has been so long. Initially I had an intermittent limp starting almost 6 years ago, but now it has been a pretty steady gait disturbance for about 2 years.


Sure. After a couple of months of incontinence I woke up one morning in 2006 and had a limp. It progressively got worse and from 2007 until April 27th 2012 I used a cane. From 2008 until the procedure date I also used a wheelchair for any distance due to fatigue and the foot drop problem.

At some point during the procedure something changed and I could feel my left foot and leg normally for the first time in years. I was moving my foot back and forth on the table in wonder.
Two months post procedure now and all results are holding. The only thing that seems to have not changed, and this was and still is an intermittant problem, is with swallowing. Thankfully it isn't anything too serious at present time. I just have to be careful when I eat.

It's very important to note that my results aren't typical. I most certainly wish you the absolute best outcome, but I went in to the procedure having minimal expectations in case I didn't see immediate or long term results. I think that is the best way to approach the decision to have it done as they still don't know why certain people have better results than others.

Again, all the best and keep us updated on your progress, positive or negative, as any and all information helps those of us in the community battling this bastard of a disease. :)

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: Those with positive results face significant challenges

Postby CureOrBust » Fri Jun 29, 2012 5:28 am

Have you seen your neuro yet?

Make sure to see him with your improvements. I have had 3 treatments with the last by Dr Sclafani, with no measurable benefits from any of them. So, when I saw my neuro he was very clear to point out that he has had a few patients have a CCSVI treatment with no benefits. The neuros see each other at conferences and in hospitals, and they talk. This is a way to start an undertow from their side. I so wished I had improvements to show (not just for the obvious), but I also have 2 unrelated neuros who are very highly respected in Australia, and one has a worldwide reach.
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Re: Those with positive results face significant challenges

Postby tiltawhirl » Fri Jun 29, 2012 5:41 pm

CureOrBust wrote:Have you seen your neuro yet?

Make sure to see him with your improvements. I have had 3 treatments with the last by Dr Sclafani, with no measurable benefits from any of them. So, when I saw my neuro he was very clear to point out that he has had a few patients have a CCSVI treatment with no benefits. The neuros see each other at conferences and in hospitals, and they talk. This is a way to start an undertow from their side. I so wished I had improvements to show (not just for the obvious), but I also have 2 unrelated neuros who are very highly respected in Australia, and one has a worldwide reach.


I decided not to see my Neuros immediately(I have my regular Neurologist, and then the guy I see at the MS clinic at St Michaels Hospital).
I felt it best to wait to see if the improvements are going to hold, rather than going back immediately to demonstrate the progress only to have to eat humble pie in front of my Neuros in the future. That would be the absolute worst thing to have happen as it psychologically reinforces the negative image the procedure has in the eyes of most Neurologists.

So, my regularly scheduled 6 month is coming up in late October. I hope that my results hold and then when I strut my shit back at my Neuros, there will be absolutely no doubt that it's long term, and that it couldn't possibly be placebo/mental results. It will be a tough pill to swallow for them, but after spending time helping people exit cults from a psychological perspective, sometimes it doesn't matter what the facts are. Some will argue black is white in the face of white being black. It will be fascinating to see how his mind justifies an EDSS of 5.5 changing to 0. Magic? :lol:

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: Those with positive results face significant challenges

Postby CureOrBust » Fri Jun 29, 2012 6:43 pm

tiltawhirl wrote:I decided not to see my Neuros immediately(I have my regular Neurologist, and then the guy I see at the MS clinic at St Michaels Hospital).
I felt it best to wait to see if the improvements are going to hold, rather than going back immediately to demonstrate the progress only to have to eat humble pie in front of my Neuros in the future. That would be the absolute worst thing to have happen as it psychologically reinforces the negative image the procedure has in the eyes of most Neurologists.

So, my regularly scheduled 6 month is coming up in late October. I hope that my results hold and then when I strut my shit back at my Neuros, there will be absolutely no doubt that it's long term, and that it couldn't possibly be placebo/mental results. It will be a tough pill to swallow for them, but after spending time helping people exit cults from a psychological perspective, sometimes it doesn't matter what the facts are. Some will argue black is white in the face of white being black. It will be fascinating to see how his mind justifies an EDSS of 5.5 changing to 0. Magic? :lol:
FILM YOURSELF NOW! An EDSS of 5.5 to 0 will show up on film and is hard to argue as placebo. Even if you do digress a little (and I TRULY hope not!) It can still be explained under CCSVI as requiring a secondary treatment.

Another option is to set up an appointment ASAP, and on the day before, cancel if you have regressed. At least then there is even more chance of not regressing, and the regular appointment will be the neuro's chance to see, confirm and reinforce that the improvements have lasted.

I truly cannot image being a 0 again, I cant even imagine an average non-ms person with an EDSS of 0.
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