About 1/3 see no improvement at all?

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

Postby welshman » Wed Jul 28, 2010 11:12 am

I hope everyone who posted earlier has come back and read the later comments. I believe that both bretzke and Enjoying are absolutely right - 66% positive results way better than any drug therapy, and yes we should all know and accept that CCSVI treatment is NOT A CURE, and really the best we should hope for is that getting that good clean oxygenated blood flowing again might just slow / stop progression. That over time, it might well result in improving the symptoms that have taken years to develope.
"Enjoying" sorry that the treatment didn't work right away, I truly do believe it might take some time for you (my wife is SPMS) but hang in there, because as this research gets going even more good things will happen.
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Postby Rieja » Wed Jul 28, 2010 12:05 pm

Based on severity and time, it reminds me of people that have a stroke. There are so many different degrees and locations. I have heard this from one person: "Yeah I was a stroke victim but I am ok now".

One day I want to look back and say "Yeah I was an MS victim but I am ok now".
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Postby Cece » Wed Jul 28, 2010 12:20 pm

Rieja wrote:Based on severity and time, it reminds me of people that have a stroke. There are so many different degrees and locations. I have heard this from one person: "Yeah I was a stroke victim but I am ok now".

One day I want to look back and say "Yeah I was an MS victim but I am ok now".

This gave me some chills...great comparison.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby sgriff » Wed Jul 28, 2010 1:17 pm

Thank's everyone for chiming in on this. My husband is having this procedure (if he does in fact have CCSVI) in two weeks in Florida and after 30 plus years of watching him suffer, I SO SO SO SO SO hope that he will see at least a cessation of disease activity!

I am very relieved that the doctor's statement of "1/3 see no improvement" doesn't necessarily mean no improvement at all, but maybe slower improvement or only possibly halting of disease activity. We would take either of those - thank you!!

Tommy has been on Tysabri for over 2 1/2 years and we are scared to take even one more infusion, so we are really hoping for some results. He took Copaxone for about 10 years before that.

To Brian - your "get real people" comment was a little harsh. I was just expressing my honest feelings about what I thought the doctor meant. Forgive me for wanting this for my husband more than any thing in my life!!



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Postby silverbirch » Wed Jul 28, 2010 1:17 pm

There is alot of good to be said about statins and asprin a wounder drug lets hope the pharmo can do the same for ms if research shows CCSVI +

I had read some were that over 40's should be on statins /asprin as part of good health if they had showed signs of previous or inherited certain illness.

If my colestrol is even a little on the high next time I have bloods done Im going to ask for it armed with my limited kneoledge of ccsvi understanding.

Dr thought I had a stroke prior to DX of MS it seems that alot of MSERS get DX with stroke first seems to make sence now in light of ccsvi !!! a connection there
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Postby concerned » Wed Jul 28, 2010 1:43 pm

Diet and exercise are much more effective and safe than statins at controlling cholesterol.
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Postby bretzke » Wed Jul 28, 2010 3:29 pm

sgriff wrote:
Tommy has been on Tysabri for over 2 1/2 years and we are scared to take even one more infusion, so we are really hoping for some results. He took Copaxone for about 10 years before that.

To Brian - your "get real people" comment was a little harsh. I was just expressing my honest feelings about what I thought the doctor meant. Forgive me for wanting this for my husband more than any thing in my life!!


Sgriff-

I'm sorry if my comment seemed like an attack on your hopes for Tommy. I wish you both the best in your quest to find some relief.

Many neuros prescribe Mitoxantrone after Tysabri treatments are no longer safe. Patients taking Mitoxantrone have recently been shown to develop leukemia in one out of every 135 patients. Mitoxantrone was approved by the FDA for RRMS, SPMS and PPMS in 2000. The Mitoxantrone leukemia risk is greater than Tysabri's PML record.

I still maintain it's important to have realistic expectations for the Liberation procedure. We also need to focus on comparing CCSVI/Liberation effectiveness and safety with currently approved drug treatments.

Brian
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Postby sgriff » Wed Jul 28, 2010 3:39 pm

Thanks Brian. And thanks for that info. If Tommy appears to have benefited by the procedure, we are going to try to forego any DMDs and see how that goes. After all, there's a little poison in every medicine.

And yes, you are so right - it is important to keep expectations realistic. It's just difficult because this is sooooooo exciting!
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Postby Trish317 » Wed Jul 28, 2010 4:04 pm

I'm going to ask what will probably sound like the stupidest question anyone has ever asked here but....

How does one determine if progression has been slowed or halted? I know that symptoms will tell alot, of course, but how is it possible to know if someone is no longer getting worse? Is it a matter of no more lesions developing? Do existing lesions heal?

Since the day my darling man got the PP diagnosis in June 2007, I've researched non-stop. But there are still so many things I don't know or don't understand.

When he got the diagnosis, the doctors told him he has two lesions in the cerebellum. I think there have also been discussions about lesion location, symptoms, and location of stenosis. I guess I'll have to do a search and see what I can find.

But I'd really like to know what people have experienced and how, other than worsening of symptoms, would someone know if the disease is progressing. Because if someone does not see symptom improvement after the procedure, how long will it take before they know if the progression has stopped and how will that be determined?

Obviously, I still have alot to learn.

sgriff, I understand exactly how you feel. I want improvements for my darling man more than I want anything in life.
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Postby Rokkit » Wed Jul 28, 2010 4:44 pm

Trish317 wrote:How does one determine if progression has been slowed or halted? I know that symptoms will tell alot, of course, but how is it possible to know if someone is no longer getting worse? Is it a matter of no more lesions developing? Do existing lesions heal?

Unfortunately, that's the $64K question right now. I was treated almost 10 months ago and I can't tell if I'm getting worse or not.
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Postby 1eye » Wed Jul 28, 2010 4:47 pm

I don't know the official way to assess progression. I was 2+ years on a trial that included testing of your walking speed and endurance. It also included a 9 hole peg test, and PASAT. I think these are as good as any, and I'm sure someone can point you to the details. They are tests that seemed to me simple enough that anyone could run them. I think basically you should know if you have progression over 2 years. I am expecting Liberation to slow down my progression. After the trial I graduated to a wheelchair. I have my own system that's kind of out of steps:

1 need cane some of the time'
2 need cane all of the time
3 need walker some of the time
4 need walker all of the time
5 need wheelchair some of the time
6 need wheelchair all of the time

I am at 6 but since I know it is still progressing I don't know what's next. It may even mean I can't use the computer any more. I have lived with MS long enough that I think I would know if progression stopped. You stop it, I'll do the rest. Sorry but that's the best I can do.
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Trish317 » Wed Jul 28, 2010 5:35 pm

Thank you Rokkit and 1eye. Aside from CCSVI, are there medical tests that a doctor performs on a person with MS....MRI's, spinal taps, etc. that determine progression?

I apologize for my dumb questions. My darling man and I had a conversation the other night and he mentioned something about one of his doctors telling him, when he was first diagnosed, that he should have periodic tests (I think it was MRI's) to determine the progression. He didn't see the point in having the test.

I guess I'm really wondering now because once he has the procedure, obviously, we want to see symptom improvement and, of course, progression stopped. I guess I'll be asking that 64K question for quite awhile.
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Postby EnjoyingTheRide » Wed Jul 28, 2010 5:49 pm

Trish317 wrote:Aside from CCSVI, are there medical tests that a doctor performs on a person with MS....MRI's, spinal taps, etc. that determine progression?

I apologize for my dumb questions. My darling man and I had a conversation the other night and he mentioned something about one of his doctors telling him, when he was first diagnosed, that he should have periodic tests (I think it was MRI's) to determine the progression. He didn't see the point in having the test.


Trish,

For PPMS there is a very poor correlation between MRI and disease progression. My MRI has barely changed in 9 years, and I've progressed from a limp to fulltime wheelchair user. I find that my doctor can't really tell me how I'm progressing. I tell him, based on how well I can accomplish my "activities of daily living" today versus 6 months or a year ago.

Good luck.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby gothicrosie » Wed Jul 28, 2010 5:56 pm

MS Progression is measured by your disability level and by lesion load seen in regular MRIs

Here is a good Disability Status Scale

Move from no cane to using a cane...to a walker...to a wheelchair...all progressive levels of disability.

Consider your health levels and mobility levels...are you worse than you were when you were diagnosed? Are you getting worse each year? Do you have new lesions in your MRIs?...then you are progressing.

My neuro has me do a MRI once a year...but I have not been progressing until just recently...my recent scan with the Hubbard Foundation unveiled two new lesions not seen in October...which can possibly explain why I need a cane now when I did not last year...sigh.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby Trish317 » Wed Jul 28, 2010 6:05 pm

Thank you, Mitch and Rosie. You've all helped me alot.
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