Think Twice if you have mild MS

1eye · Post by **1eye** » Sat Apr 09, 2011 9:51 am

Yes. I would say it like this: RRMS and people still able have still got a lot to gain. The closer to not walking, the more critical it gets. The closer you are to suicide or death, the more absolute the necessity to do it. At the same time, the more disgusting the nay saying gets.

Liberation · Post by **Liberation** » Sat Apr 09, 2011 10:08 am

,,,,,,,,,,,,,

esta · Post by **esta** » Sat Apr 09, 2011 10:28 am

DITTO LIBERATOR AND EYE

CureIous · Post by **CureIous** » Sat Apr 09, 2011 9:39 pm

Like to point out for posterity, that the original poster hasn't been on this thread since Oct, 2010.

Still a good discussion regardless. Tracy makes an interesting point r.e. early intervention.

I honestly felt there was no reason to wait, that only more damage could occur, that my kids childhood would be replete with memories of a father who was nearly almost there some of the time and brain dead the rest of the time. And that was just the present, without anything progressing at all.

Last weekend after a long workweek, I dug a hole in the concrete and installed a tetherball pole, boy do the kids love that one! I put my boy up on one hand and do pushups in the air, head tilted back, then toss him up and catch him. Wouldn't have dreamt of such foolishness just 2 years ago. That whole slow brain eye-hand coordination thing can be a real show stopper sometimes.

Now we have tetherball Olympics on the weekend.

That being said, I also agree if you are mild MS with minimal symptoms, with minimal daily impact on QOL, why not wait? Can't hurt.

But if you are noticeably worse year over year, and in some cases month over month, then circumstances may make the decision a bit easier.

Since only the patient truly knows (without some clinical and inherently inaccurate EDSS scale) how their QOL has changed, and how quickly, only they can make the most educated decision on this, taken together of course with a professional (or two's) opinion...

MegansMom · Post by **MegansMom** » Sun Apr 10, 2011 4:39 am

Although I feel for the opening poster and can understand her warning, I would not warn people to wait. I would encourage pwMS to read everythi g they can on CCSVI and then make the decision they can live with, knowing the risks.

My daughter was diagnosed and treated approximately 1 month later. Her MS symptoms started and never really let up. It was early but she seemed to be spiraling fast.

Zamboni said that in general the earlier the treatment the better the outcome. This was our experience. Megan has no MS symptoms at all.
Her Azygos was completely shut due to a double candy wrapper twist. This would never have improved or gotten open on it's own.and when combined with her other impeded vein (L IJV) the flow in her brain and spinal cord were far from normal.

Could she have gotten worse, yes, of course. She could have developed an occlusion even bigger in her jugular and the twists in her Azygos could come back. All of her symptoms could come back at any time. But for her timing is everything. She couldn't wait for all the research.

she is a single mom raising an active 12 yr old and there is one time through his childhood with no "do-overs". Meg went from a mom on the couch to a roller blading, bike riding, kayaking mom. She was able to go to work everyday and not be depressed.

It was a risk but she had too much to lose to wait.

Everyone has to educate themselves, make an informed decision and live with their choice.

Again I feel for those that do not have good outcomes but to discourage others , hmmm, that's not so good either.

robbie · Post by **robbie** » Sun Apr 10, 2011 5:03 am

closer you are to suicide

Where you close 1eye before you had it done?

griff · Post by **griff** » Sun Apr 10, 2011 5:46 am

MegansMom wrote:
It was a risk but she had too much to lose to wait.

Everyone has to educate themselves, make an informed decision and live with their choice.

Again I feel for those that do not have good outcomes but to discourage others , hmmm, that's not so good either.

I am very happy if we see more and more successful cases; however, we all know that nothing is proven yet and we all see many problems and regrets after the operations. We can educate ourselves but we are not doctors; how can we make an informed decision when even IRs and neurologists can not? Do not forget that there are many IRs who are not sold for CCSVI.

I would be the happiest person on earth if CCSVI operations would work. So, I understand if someone who can afford to do so waits a few months or a year, but I also understand if someone is not in that position.

I remember, when first, dr Zamboni came up with the cure for MS and we said that neurologists' concerns are not warranted. Now, it turns out that CCSVI operation is not a single cure for MS and many of the neurologists' concerns about safty issues are legitimate. So, we have to be careful.

Blaze · Post by **Blaze** » Sun Apr 10, 2011 8:20 am

griff wrote:

I remember, when first, dr Zamboni came up with the cure for MS and we said that neurologists' concerns are not warranted. Now, it turns out that CCSVI operation is not a single cure for MS and many of the neurologists' concerns about safty issues are legitimate. So, we have to be careful.

Dr. Z has never said angioplasty for CCSVI is a cure for MS.

MrSuccess · Post by **MrSuccess** » Sun Apr 10, 2011 9:02 am

griff - as the preceding poster said ..... Dr. Zamboni has never said CCSVI treatment is a cure for MS.

Two other important Zamboni observations :

[ 1 ] MS is an autoimmune disease .

[ 2 ] If you are on MS medication ..... stay on it . As is his wife.

Most important of all ...... all newcomers to This Is MS and CCSVI must do a lot of background reading to understand all the information . If you do this ...... you will easily identify the valuable information posted by the exceptional people that provide TIMS with continual , valuable , CCSVI updates.

By all means ..... chime in ...... but it might help to do some homework first.

Mr. Success

Cece · Post by **Cece** » Sun Apr 10, 2011 9:21 am

robbie wrote:
closer you are to suicide
Where you close 1eye before you had it done?

I have heard this from others here and it is hard to hear. Miserable disease. I am so glad for CCSVI and for its breakthrough potential.

From all the discussion, I find it of note that even though you could place me in a category of mild MS, as my neurologist did, it had a huge impact on my day-to-day life. I think the severity of my CCSVI is why, since it was cogfog, fatigue, nausea, eye issues, constantly feeling not well and doing everything I could to get myself into a balance of feeling not unwell (not aiming so high as to feel well! Just not unwell!) which might last a very short time and then slip back to constant unwellness.

Since venoplasty, I am not 100% MS free, but I am not fighting that same battle against constant unwellness. I am glad I had it done. Despite my low EDSS and high stability, my MS was not mild.

For someone who truly has mild benign don't-hardly-know-it's-there MS, waiting might be prudent as the IRs figure out best practices. They gain in knowledge by the day. On the other hand, axonal damage is widespread even in early MS and relieving CCSVI obstructions creates a healthier brain environment. It is a decision we must make for ourselves.

EJC · Post by **EJC** » Sun Apr 10, 2011 9:44 am

Emma meets other pwMS at the centre she visits twice a week for oygen therapy.

The cross section there ranges from mild (no outward physical signs) to wheelchair bound and immoble and eveything in between.

People are interested to talk to Emma as she's had the procedure, there are a couple of people there who find the theory logical and fundamentally like the fact it's not treatment by pumping quantities of drugs into your system which the manufacturers often don't quite understand how or why they work.

These people have the wait and see approach and I have to say I understand that decision. Whilst you are in a situation where MS is mild compared to many others and is not really progressing or is progressing slowly then I think it's actually prudent to wait.

Emma didn't have the luxury of the time, she is RRMS bordering SPMS - we feel the procedure has kept Emma at RRMS and slowed progression - time will tell.

If she wasn't so seriously effected with MS we may well have waited.

1eye · Post by **1eye** » Sun Apr 10, 2011 12:59 pm

Quote:
closer you are to suicide
Where you close 1eye before you had it done?

Been 'close' lots of times, from swallowing pills at 18, through 'SPMS', but still here to annoy. Maybe that's what keeps me here: the enjoyment of annoyment.

I think my mother taught me that survival is the best trick of all.

Since venoplasty, I am not 100% MS free, but I am not fighting that same battle against constant unwellness.

That's it. You remember what it is like not to be so sick.

bruce123 · Post by **bruce123** » Tue Apr 12, 2011 5:05 am

I struggle with the question of waiting every day. My wife was treated in December. She had 2 months of incredible improvement and now she is has lost almost all of the improvements. Do we do this again or do we wait? So many things have changed in the CCSVI world that it is not as easy a decision as it was last year.

There is another thread here on TIMS called "Anybody Without Stents Not Restenoses After 1 Year". I notice that there are no candidates listed yet.

While we now feel that stents are to be avoided, I wouldn't be surprised that in the future CCSVI will always be treated with stents. It seems to me that the longest term success seems to be with those with stents.

Bruce.

Cece · Post by **Cece** » Tue Apr 12, 2011 5:10 am

It seems to me that the longest term success seems to be with those with stents.

What if this is true AND it is also true that the worst failures are the ones with stents?

bruce123 · Post by **bruce123** » Wed Apr 13, 2011 4:33 am

Cece wrote:
What if this is true AND it is also true that the worst failures are the ones with stents?

Wouldn't it be great if solutions to medical problems could be found as easily as they are on TV.

I would guess that the problems associated with stents will ultimately be easier to solve than the problem of veins wanting to naturally return to their original stenosed shape. Who knows, maybe big bad pharma will be involved in the solution to stent thrombosis.

Bruce.