We are all learning about this as we go along. I hope that I am helpful to the cause.
HappyPoet
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PostPosted: Sun Mar 14, 2010 2:43 am Post subject: Reply with quote
A few questions about venograms (I guess I'm high-jacking my own thread).
1. Is a CT venogram the same as a venogram?
2. How much contrast dye (gadolinium?) is used? Where exactly is the dye released?
3. Does the venogram catheter always, sometimes or never go into the brain?
Thanks.
~HP
[Edited to fix punctuation]
Last edited by HappyPoet on Tue Mar 16, 2010 1:31 am; edited 1 time in total
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Cece
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PostPosted: Sun Mar 14, 2010 2:46 am Post subject: Reply with quote
HappyPoet wrote:
3. Does the venogram catheter always, sometimes or never go into the brain?
It would never leave the veins. I am curious about the route too...since the internal jugulars return to the heart, how do they avoid going through the heart?
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HappyPoet
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PostPosted: Sun Mar 14, 2010 3:23 am Post subject: Reply with quote
Cece,
Thanks for answering. I understand the catheter would stay within veins -- I should have been more specific, sorry. I want to know if the catheter can be threaded through the veins inside the brain.
My MRV-head shows missing segments of some of the veins/sinuses inside my brain -- since recently reading here about problems with MRVs, I want to know if a second opinion using a venogram would be of help.
Good question about the heart -- I wish I knew the answer.
~HP
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Cece
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PostPosted: Sun Mar 14, 2010 4:56 am Post subject: Reply with quote
HP, sorry, I was wondering what you meant by that question! I am not sure then of the answers to any of your questions...maybe someone else will come along. Smile
I have heard that the very high up stenoses, mostly found by Dake, were hard to treat...I suppose because they were essentially in the brain?
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bestadmom
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PostPosted: Sun Mar 14, 2010 6:42 am Post subject: Reply with quote
The catheter must go thru the heart to get to the veins that drain into it from the head, neck, arms and spinal cord. It is not a big deal - you don't feel a thing. If they find stenosis, it is the right time to do a balloon or stent, since they are in there anyway. That's the point. The catheter can only go until it hits a "dead end".
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drsclafani
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PostPosted: Sun Mar 14, 2010 3:36 pm Post subject: i am outed Reply with quote Edit/Delete this post
Perhaps it is not appropriate to write a reply, but now that i have been outed as a physician treating CCSVI, I thought I would read what is discussed and see whether anyone would want to hear from someone on the other side of the catheter.
It was clear from reading a few posts that there are great misgivings and lots of unfamiliarity with these tests, their methodology and their use.
This evening I heard some discussions about catheter venography and thought I would try to help sort this out.
Catheter venography is the gold standard test for viewing vein anatomy. It is performed under local anesthesia. All the veins connect, so we try to enter in a safe, simple area where the vein is readily available. We would not want to enter in the neck, because it is more difficult to work from there, the vein is very close to the carotid artery and we need to see the entire vein, so putting the tube there would miss part of it.
The leg is the best location up near the groin, because the vein is just an inch or two deep to the skin and readily hit by the small needle that is used. Since we are below the veins involved in CCSVI, the jugular veins and the azygous vein, we must traverse the right atrium of the heart to get to them. Sounds scary but actually that is a relatively easy part of this generally easy procedure. The catheter (tube) we use is very thin, measuring less than a twelfth of an inch in diameter. It is visible on xray so we can find our way. The catheters have different tips with varying curvatures that help get into the veins. Because there are no pain fibers on the inside of the vein, moving the catheter in the veins is painless.
The venogram is always the first part of a treatment of CCSVI. it provides the roadmap for reaching any abnormalities. It makes no sense to divide the procedure into a venogram test followed at another time by the treatment part. They should always be done at the same time.
The dye used to see the inside of the veins is a very safe iodine containing substance. Adverse reactions are very uncommon, less common, for example, than many antibiotics or pain medications. I recently reviewed 600,000 exams of which 100,000 had xray dye injected. There were two serious reactions and 17 moderate reactions in the 100,000 exams. I will take those odds.
If i overstepped my bounds, let me know and i will lurk
ciao for now[/quote]
Answer:Someone asked::
Could it be that the neck is dense and tightly packed with muscle, jugulars, carotids, throat, etc. and that contributes to the CT/MRV/ultrasounds being unreliable? The more I've read about CCSVI, the more I'm impressed with necks....
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It is true that some of the narrowings seen on MRV do not prove to be stenoses on the catheter based venograms. While the narrowings are a sign of CCSVI, some of them are not necessarily the cause of CCSVI. If you looked at the jugular veins while standing, you would see that they are always narrowed, even in the absence of CCSVI. That is because the blood of the brain drains through the vertebral veins, not the jugular veins, when standing.
Imagine you had a flat soft hose and you ran a lot of water through it. It would distend and change shapes as it filled. If you slow the flow, the hose would partially collapse, perhaps becoming oval in shape.
The same thing happens to the jugular vein in CCSVI. Obstructions that increase resistance to drainage through the jugular veins drive the blood through the vertebral venous system. Thus as flow is reduced in the jugular vein it collapses and appears narrow. These narrowings seem to occur next to the carotid bulb and the second cervical vertebra
Nonetheless, the narrowing is a “sign” of CCSVI, even if it is not the cause of the CCSVI. Other signs include lots of small collateral vessels and large branches bypassing the areas of resistance. Big thick valves, reversed valves and poorly developed narrowed veins are other signs.
So MRV has value in screening but catheter venography is the gold standard.
PostPosted: Sun Mar 14, 2010 9:03 pm Post subject: Reply with quote
Dear Dr. Sclafani,
Thank you very much for taking the time to post here on TiMS. I have already made an application to have angioplasty done with you and would be very appreciative if you could answer a few questions about complications.
Most of what I have read indicates that angioplasty is safe with few complications. If this is the case angioplasty (not stenting) is a no brainer for me even without more rigid clinical evidence of efficacy. Although early in the study process, I am quite convinced that CCSVI is the root cause of much or most of MS. When I asked a reputable interventional radiologist in the Montreal area if angioplasty was safe for CCSVI, he was not too reasssuring. He said that if you dilate a vein there is a significant risk of restenosis (which we already know is about 50% in IJV's) but also a risk that the restenosis gets worse than it was initially. Do you think this is true. If so, what would the magnitude of this risk be? If this is truly the case I might have second thoughts.
The second part to my question is how often can we do angio on the same vein? Can we repeat the procedure regularly, for eg every 6 months if it restenoses. This might be costly, but something that I would be willing to endure and pay for if it could keep my MS progression at bay.
Thanks,
North
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jak7ham9
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PostPosted: Mon Mar 15, 2010 1:46 am Post subject: sclafani ccsvi Reply with quote
Hello Dr. Sclafani! So excited to hear from you. I am scheduled to have surgery with you on week of March 22nd. I am delighted to see you interacting online there are so many of us that are looking desperately for help! The operation has always sounded quite understandably basic to me. My father a surgeon and probably will be in to see you as a patient too always comments that he thinks vein graft would be good if you are still concerned about various stents. He has alway used vein grafts to good avail in neck esp reconstruction. I am becoming quite adept at dealing with the insurrance aspect of the congenital vein blockage and I am going to posting all my info and suggestions to help others .Even those under disability from different states with non participating etc etc.
I look forward to meeting you soon! Barbara
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Cece
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PostPosted: Mon Mar 15, 2010 2:12 am Post subject: Re: sclafani ccsvi Reply with quote
jak7ham9 wrote:
I am becoming quite adept at dealing with the insurrance aspect of the congenital vein blockage and I am going to posting all my info and suggestions to help others.
Can't wait to read this!
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ozarkcanoer
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PostPosted: Mon Mar 15, 2010 2:25 am Post subject: Reply with quote
Dr Sclafani, thank you for posting some very interesting information. We here on TIMS often feel isolated from the doctors who actually perform angioplasty. I hope that CCSVI will soon be recognized as condition with standard diagnostics and treatment so everybody can benefit. And I hope that CCSVI is soon correlated with MS.
ozarkcanoer
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annad
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PostPosted: Mon Mar 15, 2010 2:37 am Post subject: Reply with quote
drsclafani wrote:
Perhaps it is not appropriate to write a reply, but now that i have been outed as a physician treating CCSVI . . .
Thank you for your information, it is greatly appreciated.
Your opening sentence saddens me. That should not be happening. We would get no where without doctors like yourself.
thank you!
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Cece
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PostPosted: Mon Mar 15, 2010 2:47 am Post subject: Reply with quote
I love forums, they're the best place to find out about a subject in obsessive complete detail...and when it comes to flying off to New York to undergo not yet proven surgical treatment, I needed this level of detail or I wouldn't be doing it. Smile
So for drsclafani to come along and have added to the pool of knowledge that we've been trying to gather here, it is much appreciated.
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zinamaria
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PostPosted: Mon Mar 15, 2010 4:32 am Post subject: Reply with quote
Okay, wow, so I am shocked and pleased all at once that we have a professional on board to enlighten us with some very needed facts! Thank you Dr Scalfani...you have in no way overstepped boundaries with us here, for we are all suffering and wondering and hoping. And I know I speak for many when we say how much we love Marc, and are looking forward to his update.
I am still surprised, frankly, that you took time away from your very busy schedule (I don't think I've ever been in a doctor's office where I didn't have to wait a very long time to see him/her).
Molto grazie, e spero che ci sentiamo presto,
Zina
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Rokkit
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PostPosted: Mon Mar 15, 2010 5:49 am Post subject: Re: i am outed Reply with quote
drsclafani wrote:
If i overstepped my bounds, let me know and i will lurk
ciao for now
Are you kidding??? Post away, my friend!
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Kacey
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PostPosted: Mon Mar 15, 2010 6:46 am Post subject: Reply with quote
Thank you, Doc! It's great to hear from someone who really knows! 'twas a good thing you did....
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HappyPoet
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PostPosted: Mon Mar 15, 2010 7:31 am Post subject: Reply with quote
Dr. Sclafani, Welcome!
It's wonderful you've joined TIMS -- in fact, you've made my day!
Thank you very much for the lesson on venograms.
No more lurking, okay?
Smile
~HappyPoet
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drsclafani
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PostPosted: Mon Mar 15, 2010 8:07 am Post subject: HOW IS THE ACTUALLY BALLOONING DONE Reply with quote Edit/Delete this post
After we get the first wire into the vein through the first needle, we thread a sheath over the wire into the leg vein and then all further manuevers and tool exchanges are done through the sheath. This reduces the wear and tear on the vein from multiple catheter exchanges, etc.
So once we identify a narrowing, we put a flexible guidewire through the diagnostic catheter and remove the catheter while leaving the wire in its place. We then thread a balloon catheter over the wire and position it with the center of the balloon in the middle of the narrowing.
The balloon catheter is a regular small catheter with a balloon attached to it. the balloon is wrapped tightly so it is a very low profile and easily goes through the sheath. The ballloon catheter has a small channel that goes from the outside of the patient, through the catheter and exits the catheter where the balloon surrounds it. Through the exterior port on that channel, liquids are injected and thus fill the balloon. The balloon is made of very strong materials that withstand very high pressures (about 30 atmospheres) that usually overcome any resistant to expansion.
Under fluoroscopic vision we follow the balloon catheter until it is in the exact proper position and inflate it. We can do this several times. Mark Stecker's blog shows a balloon inflated in the body.
When the treatment is completed. the balloon is devlated and then removed over the guidewire.
Then we exchange the balloon catheter for a regular catheter and do another venogram to see what effect we have had. Then we move on to the next vein evaluation.
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drsclafani
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PostPosted: Mon Mar 15, 2010 8:32 am Post subject: Reply with quote Edit/Delete this post
Quote:
When I asked a reputable interventional radiologist in the Montreal area if angioplasty was safe for CCSVI, he was not too reasssuring. He said that if you dilate a vein there is a significant risk of restenosis (which we already know is about 50% in IJV's) but also a risk that the restenosis gets worse than it was initially. Do you think this is true. If so, what would the magnitude of this risk be? If this is truly the case I might have second thoughts.
The second part to my question is how often can we do angio on the same vein? Can we repeat the procedure regularly, for eg every 6 months if it restenoses. This might be costly, but something that I would be willing to endure and pay for if it could keep my MS progression at bay.
Thanks,
North
Restenosis occured in 50% of Dr Zamboni's patients in the report. It is difficult to say what this means becasue he did not tell us details of what types of problems had recurrent narrowing.
This is a different entity that that for which angioplasty is usually used and we should not correlate the outcomes of two different entities. While it is true that veins tend to restenose with other reasons for veonplasty, the narrowings of ccsvi are very different in pathology. These abnormal veins have all kinds of bizarre narrowings unlike anything i routine deal with. Only time will tell.
The second part of the question is not how simple would it be to repeat the venograms. It is really how much time do we want to use to provide surveillance of failing vein angioplasty when there are so many patients needing definitive treatment. Using Venography to followup is going to clog up the treatment assembly line.
Look, I am coming around to thinking that venography is really the way to assess, not mri and not ultrasound. If vein problems are present in 60-90% of patients, how can you not test with the gold standard test. The reason i am doing these other tests is to determine whether US or MRV can be used as a screening test for followup checks, not to determine whether venography needs to be performed.
Perhaps a bit radical, but I am an angiographer, not an imager.
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Rokkit
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PostPosted: Mon Mar 15, 2010 9:32 am Post subject: Reply with quote
drsclafani wrote:
Look, I am coming around to thinking that venography is really the way to assess, not mri and not ultrasound. If vein problems are present in 60-90% of patients, how can you not test with the gold standard test. The reason i am doing these other tests is to determine whether US or MRV can be used as a screening test for followup checks, not to determine whether venography needs to be performed.
PostPosted: Mon Mar 15, 2010 2:26 pm Post subject: Reply with quote
Rokkit wrote: drsclafani wrote:
Either things changed, or the CT (or mri or ultrasound) isn't reliable.
Could it be that the neck is dense and tightly packed with muscle, jugulars, carotids, throat, etc. and that contributes to the CT/MRV/ultrasounds being unreliable? The more I've read about CCSVI, the more I'm impressed with necks....
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simone
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PostPosted: Mon Mar 15, 2010 4:40 pm Post subject: Reply with quote
Dear Dr. Sciafani,
Thank you so much !
Last edited by simone on Tue Mar 16, 2010 2:25 am; edited 1 time in total
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costumenastional
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PostPosted: Mon Mar 15, 2010 5:27 pm Post subject: Reply with quote
Dr. Sclafani,
thank you and i got to say : what you told us just makes sense.
God bless and please, please help as many patients as possible.
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msscooter
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PostPosted: Tue Mar 16, 2010 2:19 am Post subject: Thank you Dr. Scalfani Reply with quote
I am so grateful for your work and willingness to treat us. You Rock!![
That is exactly what I've been thinking. I know you can't discuss a patient, but lets say you had one whose CT showed a stenosis in one jugular, but the venography showed stenosis in the opposite jugular. Either things changed, or the CT (or mri or ultrasound) isn't reliable.
I really wish BNAC would take say 10 people from each of 4 groups from their study and do a venography. The groups being:
1. CDMS, CCSVI found
2. CDMS, no CCSVI found
3. Healthy Control, CCSVI found
4. Healthy Control, no CCSVI found.
I would really, really like to know what the venography would show for those groups.