Angioplasty, reg vs oversized

[mavis]

So there you have it. If this little thread is anything to go by, you will hear just as many or more anecdotal reports (remember they're only anecdotes, whatever that means) of negative results as positive. The real rate of positive results, according to what Cece says, is much higher. That doesn't help if you are in the low negative end.

I would be REALLY careful if I based my decision to get the procedure done on the so called "positive reports". Everybody is different.

[DrCumming]

i don't think anyone has good data at this point.

i have seen 2 occlusions post ballooning and 3 severe restenosis out of about 80 veins treated.

the 2 occlusions were in hypoplastic veins (ie the patient had a dominant and vein and the non dominant system occlused). if the confluence of the saggital and transverse sinuses is intact then i do not think this is will turn out to be really important.

the 3 severe stensosis were in veins aggressive treated ie when the goal was to pop/crack the annulus. IVUS has changed mine (and Scalafini's) thinking about this concept. i believe in most instances, this is strictly a valve problem and that smaller balloons and lower pressures are better. the annulus is not the problem.

i have also seen severe occlusions in distal IJ's that have come to me that were treated elsewhere. this section of vein is a totally different animal. its very hard to get a good result in this segment.

there is no question, the IJ's a very different from any other vein we treat. much too learn.

don't take my numbers above too seriously, they are anecdotal at this point. the take away is that we can definitely make things worse by ballooning and we need to determine the way to minimize this complication. i am hopeful that careful balloon sizing with IVUS will offer better outcomes.

[1eye]

1. I think I have some kind of reflux happening, that makes my legs jump, big time. It ain't no fun.
2. I have foot drop and muscle atrophy all over the place on my left side. That's where I've been able to see some improvements but it's very slow, and my walking speed is still the pits. I was worried today because I am still prone to heat problems, and if it were not for the nice breeze I might not have made it across the big mall parking lot in the hot sun. As it was, I was very slow at the end (people asking if I needed any help), and had to ask for lots of help and a scooter, when I got inside the grocery store.
3. I feel different in my veins on the right side of my neck. I am not too worried because my left side is still improving slowly. I use my battery massager on it but I don't know what that does.
4. I live in Canada. I have no neurologist. My GP recommended looking outside of town. You-know-who has things all sewn up around this area. I don't know who to show my follow-up reports to. The problem is, the details might be familiar to all of you, but when CCSVI is not allowed any official existence, nobody can help you. Especially not neurologists, which is ironic, because they should be your best friends. Maybe bad chemistry, politics, or money-making has soured them, maybe it's from a century's worth of bad times. I don't know. Maybe it's the planets.

I have never believed surgery or intervention or whatever you call it will not ever make things worse. When she was 12 my wife had a bunion butcher job that left her with a hammer toe. A friend had a knee injury back in the 70s that has ended up permanent. I had a guy give me an approved procedure that was supposed to replace a vasectomy, but it didn't quite work. No, no unwanted pregnancies, but a pretty painful job was done with a conventional one later on, just to "make sure". My brother had his gall bladder out before laparoscopy, and the stitches are amazing. There are always things that can and will go wrong when you mess with the human body, chemically or not.

Sometimes it's a good idea, like when my brother was dying, or my friend broke her neck, or when I had my heart attack.

Some IRs work on victims with gunshot wounds. Do you feel like a congenital 'MS' shooting victim? Do you want a bandaid, do you just want to be stitched up and hope for the best? Maybe there is some problem in there you'd like looked at? I don't know. I was not looking, didn't see it go in. Maybe you were wearing a vest. Maybe it went right through and didn't even bleed much. You know how you are better than anyone else.

That's about how serious CCSVI is. It may be less pressing to a guy who has to decide on a tee-off time and take the Jaguar in to the mechanic. It is not something to be in despair about, but it is damn serious. So do it right because you don't get a replacement neck. Hard, when you don't have all your wits about you. Take deep breaths.

[logan]

Thank you very much, this is exactly what I was looking for from all of you, Cece, Diana, Munchkin, Vivavie, 1eye, Hopeful2, mavis, wewillbeatms, Dr Cumming, and happypoet. You guys are really great, I mean that. And Diana is not scaring me, this is what people need to hear to make this choice at this time, some of us can hold off a little longer to get the best results, and maybe a one shot deal! I do not see any responses as negative ones, you guys went out and used your bodies to test this out, and some of you have not done well, and we need to know this, and learn, so we can weigh the choices we need to make. Thank you for risking your health so we can learn from this. And I am truly sorry for those who didn’t turn out so well.

I am truly touched at the responses from all of you.

I am on 30, mg of Prednisone and 200 mg of azathioprine daily and I think the meds are really bad for me. I had the blood test for NMO and I was the lucky 40% that didn’t test positive.

My early symptoms in May of 2002 were pins and needles, numbing from right side to left and within two months, I was numb from the nose down and in a wheelchair, and my right eye was blurry. I was sent to St. Michaels in Toronto. After a week, MRI’s invoked potentials, and a LP, which showed elevated protein and high white blood cell count, MRI showed relatively few lesions in the brain, but inflammation and lesions around the T2-T4 area, and DXed in august with PPMS, and or Devic’s, Diagnosed and iaudiosed!

Lucky me I have an appointment to see them in June!

I am relatively stable, but I get attacks several times a year, sometimes bad footdrop on a daily basis when I push myself too much. I try to stay active, not sure what I was tested for, but I had a battery of tests done at the beginning to rule a lot of stuff out, Diabetes, Aids, ect! My GP told me last week, that if he had what I have, he would be getting angioplasty tomoro, but he also told me to be very vigilant with this and do what all of you have suggested, to be on guard, because I can afford to hold off until more data comes in, I am deteriorating, but slowly, and I could be a lot worse, I saw what Richard Pryor went through, and I am lucky right now. Kinda like one step forward, two steps back, day to day, and a battle every day.

The report from Barrie was
“ Conclusion Venous reflux/insufficiency is noted in the internal jugular veins at 0 and 90 degrees. Abnormal flow is noted in the deep cerebral veins. B mode abnormalities noted bilaterally. Criteria met for CCSVI: 3/5 (qualifying factor for CCSVI 2/5) The findings on this study supports the diagnosis of CCSVI based on Dr. Zamboni’s published literature.

On that note I would like to take this moment to properly thank the Angel that tested me In Barrie, I have never met, a person who affected me like she did, and I cannot put into words on how a professional can be so down to earth, she changed my life.

Thank you all for everything, this is exactly what I needed to hear from all of you.

Henri

[eric593]

You can tell by the broad range of experiences that little is settled about CCSVI treatment or treatment prognosis. In fact, if you would have asked Cece late last year or early this year, she also was a supporter of aggressive treatment. If her insurance had gone through just a little earlier, she too would have been the recipient of the aggressive treatment she now cautions against. She has only changed her tune because her doctor did after causing thromboses with aggressive treatment techniques. You might find her also changing her mind on stents now too since her doctor has begun using them if needed.

There is still much to be learned about how to safely and effectively treat this, things change quickly as you can see by Dr. Sclafani's changes just over the past few months. It is not settled. And remember, you still pay whether you have a good outcome or a bad outcome and whether you end up improved, unchanged or worse. You will still pay even if the doctor learns the week after your treatment that your treatment method wasn't the best and there might be a better way.

Happy Poet had lots of good thoughts. If you can wait for CCSVI treatment, I'd wait. Your doctor may think this is just straightforward angioplasty, but it has become anything but 'routine'. Remember, Cece only had a .25 EDSS that she says dramatically improved, but she also adores her doctor and focused on mainly the positive outcomes before she was treated, making a strong placebo effect even more likely. Even then, some of her early reported improvements haven't persisted, according to her.

If you have limited funds, with the 50% restenosis rate, you might want to wait if you would not be able to be retreated. The stories here of retreatments are commonplace - just ask Drs. Sclafani and Cumming how many of their patients are not arriving for their first treatment. With the prices being charged, this is not a cheap, one-time endeavour, you have to be prepared physically, financially and psychologically to have repeat procedures. Most especially when the doctors are still trying to figure out how best to treat, yet charging patients for their learning curve and even learning failures. We in Canada are not used to the 'profit medicine' paradigm, but remember, doctors in the US will be happy to accommodate a patient in their request for treatment for a price, regardless of whether they think it will provide a benefit or not. It's not something we're used to, but we need to keep that in mind that it adds a new dimension. Even the ultrasounds are being charged at double or more the price of those in Canada except for False Creek who has also jacked up their price.

There's money to be made at this, and doctors are more than happy to provide the service for a nice price, far more than Dr. Sandy McDonald in Canada has said it would actually cost in the Cdn system. Capitalism is alive and well in the CCSVI treatment business.

Remember, veins are damaged with each procedure. If you can wait, I would suggest you do, because you want your veins to be in as good a condition as possible when the doctors figure out the best and safest way to treat, and whether enduring patency is even possible...or efficacious. Usually much of this is resolved in experimental trials on mice and men, but if you want to skip ahead of scientific method, just know that the learning curve will be done on your coin and possibly at the expense of your health, like many others here. Yes, you could have a great benefit that may or may not last. Or you could find yourself unchanged but lighter in the wallet. Or worse, worse off than before with damaged veins that prevents you from taking advantage of what doctors will learn in the next year or two.

Even some of the US insurers are refusing to cover this because of its experimental nature. The Globe just published many articles on CCSVI that try to put this into perspective and dampen the hype that has exceeded the science, which is conflicting, like treatment results. Hopefully the real life stories above will help you make this decision carefully and soberly for yourself.

Good luck.

[1eye]

Of course I have to reply to that. I tried LDN, after a long struggle and a tempest in a teapot. The result was, I think, the nocebo effect, and I progressed a lot, with foot paralysis I had never seen. Meanwhile, I had gone off DMDs, and my doctors refused to represcribe, I got steadily worse after that until my CCSVI procedure.

Forget the details. The lesson I learned from all that is I will never, never, never, never, never advise anyone what treatment not to take. Including CCSVI procedures. It ain't my business, I couldn't live with the possible results, and can't control those individuals you may be depending on for good treatment.

Same goes for advising you to do it, really. I ain't no doctor.

[Cece]

slanderous!

Except for the part about me holding Dr. Sclafani in high esteem.

As for my low EDSS, I am grateful for it, but please do not demean the effects of 'cerebral' MS. Severe fatigue, disabling cogfog, constant ill-being...I wouldn't wish it on anyone. And I really hope it does not come back.

[1eye]

MANY are afraid of being attacked if they post any negative outcome.

If you are attacked, tell the moderator immediately, please. We are all better off hearing as much of the truth, good or bad, as we can get. Everyone has their own filters that tell them what is true and false. Being here long enough I think helps develop very good accuracy.

[Cece]

I wonder if my immediate improvements are because of the severity of my occlusions. 80% and 100% closed jugulars.

Maybe I just never believed enough in my Copaxone injections or I could've been cured ages ago....

Remember, Cece only had a .25 EDSS that she says dramatically improved,

I have never said my EDSS improved. I have said that my severe 'cerebral' MS symptoms improved. They are not measured on the EDSS.

[eric593]

Thanks for your clarification, Cece that your EDSS remains unchanged despite CCSVI treatment. Of course, the EDSS Kurtze scale includes 8 Functional Systems that are evaluated and rated and would contain a variety of neurological defecits. One of the Functional Systems evaluated in EDSS IS cerebral effects. The scale may more heavily weight mobility issues, but it by no means excludes other important and significant Functional Systems that impact daily living.

[Cece]

Thanks for your clarification, Cece that your EDSS remains unchanged despite CCSVI treatment.

I have never said that either.

My EDSS was said to be "less than 0.5, although greater than 0" at my winter 2010 appt. Prior to that it had been 0.5 in 2009, 0 in 2007 and 0.5 in 2006.

In the spring of 2010, following a vacation, I had an MS relapse. It passed on its own, with one new symptom, and an increase in fatigue.

Ideally I would've had an EDSS test done after that relapse and before my CCSVI treatment, but when I went for a neuro exam, all my neuro did was rant about CCSVI. *sigh*

At my most recent appointment, he did not tell me my EDSS score. So it is unknown whether it has stayed the same, improved, or worsened since CCSVI treatment.

[Johnson]

I should also mention to Logan that I too had treatment but did not experience any benefits, but fortunately no negative effects either, thank goodness. To be honest, it makes me wonder more about placebo effect because I went in skeptical, but open-minded, but did not see any benefits. It seems suspicious to me why that was when so many others claim improvements, yet I, with my skepticism and lack of expectations, did not. I do wonder why. Maybe it's just a coincidence.

Hey Eric,

That sucks that you had no benefit. I'm sorry. Who were you treated by?

I had the same frame of mind as you did when I went for my first go, although I was more agnostic than sceptical. I had more of the "science" - or better, my own understanding of what was proposed by Zamboni - and hadn't read so many of the wondrous reports that we read now. I was #508 or something like that. I have never had cold feet, nor a lot of the symptoms (pain, drop foot, "MS Hug", bowel/bladder issues, etc.) it was mostly fatigue, cognitive issues, balance, and such. If I was expecting anything, it was HD vision - which did not happen. For me, the fatigue and balance relief were the most marked and blessed, and the brain fog definitely dissipated, but my mind was not as sharp as I had hoped. I had other things change that I had never noticed a problem with, and thus had zero knowledge nor expectation of. I know from experience that I am a difficult subject to placebo.

The second time, I really hoped for the wow of the first. I expected it. I had about 10% relief, where the first time was about 90%. I was thankful also that I did not get worse, as those more sober reports were piling up.

In ten days, I go for round 3, this time with IVUS. I hope that IVUS will resolve things more permanently, and I hope that my request for big balloons and high pressure did not damage my veins in October. I am glad that I took no stent, although for three days after the 2nd try, I wondered if I was nuts for saying "no".

I have never raved about how fantastic angioplasty of the jugulars is, I think I only really wrote "It works!" the day after the first PTA, and described what I felt. I have also written here that I had no real benefit the 2nd time (although, I have become reasonably adept at seeing things on venogram and US thanks to professional contributors here, and I can see where the doc's didn't finish the job). I will give an honest and concise account again. I am as hopeful as I always am, but have no real expectations - just the hope that nothing goes sideways.

I don't believe that we are just seeing placebo. I don't think that your scepticism might have had the opposite effect either. It's odd that you got nothing, and I wonder what might have been missed.

[HappyPoet]

I am on 30, mg of Prednisone and 200 mg of azathioprine daily and I think the meds are really bad for me. I had the blood test for NMO and I was the lucky 40% that didn’t test positive.

My early symptoms in May of 2002 were pins and needles, numbing from right side to left and within two months, I was numb from the nose down and in a wheelchair, and my right eye was blurry. I was sent to St. Michaels in Toronto. After a week, MRI’s invoked potentials, and a LP, which showed elevated protein and high white blood cell count, MRI showed relatively few lesions in the brain, but inflammation and lesions around the T2-T4 area, and DXed in august with PPMS, and or Devic’s, Diagnosed and iaudiosed!

Lucky me I have an appointment to see them in June!

I am relatively stable, but I get attacks several times a year, sometimes bad footdrop on a daily basis when I push myself too much. I try to stay active, not sure what I was tested for, but I had a battery of tests done at the beginning to rule a lot of stuff out, Diabetes, Aids, ect! My GP told me last week, that if he had what I have, he would be getting angioplasty tomoro, but he also told me to be very vigilant with this and do what all of you have suggested, to be on guard, because I can afford to hold off until more data comes in, I am deteriorating, but slowly, and I could be a lot worse, I saw what Richard Pryor went through, and I am lucky right now. Kinda like one step forward, two steps back, day to day, and a battle every day.

The report from Barrie was
“ Conclusion Venous reflux/insufficiency is noted in the internal jugular veins at 0 and 90 degrees. Abnormal flow is noted in the deep cerebral veins. B mode abnormalities noted bilaterally. Criteria met for CCSVI: 3/5 (qualifying factor for CCSVI 2/5) The findings on this study supports the diagnosis of CCSVI based on Dr. Zamboni’s published literature.

Thank you for replying, Henri

Your case is a bit unclear to me. You were told you're Primary Progressive, but you still have relapses every year. At one time, "Relapsing Progressive" was an official category, and I wonder if it still is. I hope the daily prednisone and azathioprine (Imuran) help.

I see you meet the "deep cerebral veins" criteria, the criteria which was removed, but since you still meet two other criteria, you still qualify for the diagnosis of CCSVI, I was sorry to see. I wonder if Barrie will amend your report using the updated Zamboni qualifying criteria of 2/4.

I'm glad you were tested for NMO and are not a diabetic nor have AIDS. Remember to find out what other diseases/conditions you were tested for, especially Lyme disease. Also, be sure to request/read all reports of all tests and follow up with questions for your doctors.

Also, ask for new blood tests for Vit D3, magnesium, and zinc (jimmylegs can help you in this area; she's a moderator here, and will be happy to answer your questions).

Best of luck.

[HappyPoet]

Henri,

Here are two more things for your consideration:

1) If you haven't received a second opinion re your PPMS diagnosis, you might want to consider doing so.

2) You might want to check out some of TIMS' other forums: http://www.thisisms.com/forums.html

[HappyPoet]

To be honest, it makes me wonder more about placebo effect because I went in skeptical, but open-minded, but did not see any benefits. It seems suspicious to me why that was when so many others claim improvements, yet I, with my skepticism and lack of expectations, did not. I do wonder why. Maybe it's just a coincidence.

Eric, here are some possible scientific explanations for your lack of improvements:

1) You have unknown intracranial venous malformations (shown on MRV).

2) Your doctor didn't use IVUS and missed a problem(s), especially in the azygos.

3) You were undertreated: balloon size too small, pressure too low, # of dilations insufficient, # of minutes/dilation insufficient, IJ vein ballooned instead of IJ valve, collateral ballooned instead of IJV, and/or lack of proper post-op anticoagulation protocol.

4) You were overtreated: balloon size too large, pressure too high, too many dilations, and/or too many minutes/dilation; less likely than #3 because my understanding is that you haven't restenosed (recoil, collapsed vein, thrombosis (blood clot), and/or intimal hyperplasia (can also cause thrombosis)).

5) You went to a clinic that uses substandard imaging equipment (Dr. Cumming mentioned seeing such cases), or to an inexperienced doctor, or to a faraway location (stress of travel), and/or you have undiagnosed MT.

She has only changed her tune because her doctor did after causing thromboses with aggressive treatment techniques. You might find her also changing her mind on stents now too since her doctor has begun using them if needed.

Eric, you might not realize this, but you added the element of unnecessary snarkiness to your posts by using such phrasing as, "changed her tune." Techniques will ALWAYS be changing and evolving as the best doctors keep working toward finding the best practices. Also, Dr. Sclafani has always said he would use stents only if absolutely necessary.

Regarding "context," everyone would, of course, agree with you that it's important which is why it should be noted that Dr. Sclafani has performed over one hundred procedures and has come upon ONLY one case in which a stent will be needed, which is less than 1% of all his cases. With AAC (American Access Care) overall, Dr. S just reported on TIMS that the rate of stent usage is 3% in over 600 cases.