This Is MS Multiple Sclerosis Knowledge & Support Community
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
Another quick question (darn I could ask questions all night):
While you are 'ballooning' that jugular; no any blood is flowing in it so that it would 'help and force the passage' since all the flow goes anyway to the collateral - Which I suppose is an easier way "out"
Therefore expending it will result in recoil since the flow 'use to go' throughout the collateral(s) ???
UNTIL THERE IS, A RANDOMIZED PROSPECTIVE TRIAL IS UNETHICAL IN MY MIND.
This makes my "support all our doctors" line a little harder to deliver.
not sure i understand this. I would not say that ethics are transferable from one doc to another. we each have our own ethical standards.
Yes, but as patient advocates, we have to choose our ethics too.
I've accepted what you've said about RCTs being too soon, but I have in the past several times linked to Denise Manley's fundraiser for Dr. Siskin's trial; I cheered along with others when it suddenly bumped from $5,000 to $15,000 raised when a large donation came in. Joan yesterday posted a link to CCSVI Alliance's donation page specifically stating that a donation will support the CCSVI trials. I know many people who have donated, names are even listed on Denise's fundraiser page. But if as patient advocates we realize that RCTs are unethical and at this time may work against us by backfiring through the use of not-perfected methods that show nonresults, then our energy or donations are better used in different directions.
There's not really a question here, just me exploring this.
Dr. Sclafani
Many years ago I had hernia surgery. Plugs were installed in the tears in the abdominal wall, one on each side about 3 inches either side of center and about 4 or 5 inches below the navel. I think they covered the plugs with a mesh which holds them in place. Would any of this stuff be in the way of the catheter for venoplasty?
Ok, assuming that accepting defeat is not the chosen option, how about:
drsclafani wrote:There is a technique which attempts to progressively dilate underdeveloped veins as part of the creation of an arteriovenous fistula for hemodialysis. I have begun to explore this option for hypoplastic veins.
Progressive dilation would just mean dilating it again and again? All in a row or does the patient get a break between rounds?
drsclafani wrote:looking at your mrv, i see lots of distended collateral veins and i do not see the central parts of either ijv. Nice to see the dural sinuses looking pretty good.. However i do not see well the truncular areas of the IJVs.
the MRV is nice to look at but does not change my approach at all.
Hi Dr. the what to do question. For me I have the thought until you are able to categorize types of flow restriction you are going blind on every one. Obviously you are very skilled and experience tells you what may be where. It's the unskilled IR who wants to up skill.
Pathological studies work for me because it gives a tangible idea of what structure etc you have, and you could explore the 'weak points' so that immobilizing the problem area would be more 'educated'.
IVIS may be helpful too.
There will be many IR's who are going to be lost with this as well as some old hands.
I am assuming that there are basic commonalities in malformations. Does imaging with MRI (Dr. Haackes skills) help with this. To write a Manuel on CCSVI techniques is what you are meaning?
Back to Jack, the way I look at problems I would tend to break it down into areas that are manageable. Look for the cause of collaterals and work from the top down, remembering that the lower flow problems are still needing investigation, they will not go away on their own.
1. It appears the vein is not wanting to stay open, too small.
2. Re-opening via balloon only leads to more scarring and worse narrowing.
3. Every time you go back in it's further trauma to veins.
4. I vote covered stent.
Yes, it has issues of its own, including risk of clot, etc., and will have to be closely monitored but how else are you going to keep it open?
JoyIsMyStrength wrote:Well this oughta start a debate...
now what?
1. It appears the vein is not wanting to stay open, too small.
2. Re-opening via balloon only leads to more scarring and worse narrowing.
3. Every time you go back in it's further trauma to veins.
4. I vote covered stent.
Yes, it has issues of its own, including risk of clot, etc., and will have to be closely monitored but how else are you going to keep it open?
Pretty extreme, but how about vascular surgery, opening and restructuring the vein or grafting in a patent vein? If the blockage is important enough, would be worth it. How do we know if the blockage is that critical? How about diverting the veinous flow to another route? Is that sometimes doen?
As I see it if there is a consensus on balloon size and pressure then a one time procedure is the goal, and not having to leave any thing behind e.g stent.
Experiment to find a simple fix that has the least risk and restriction in the future.
Cece wrote:If "which side first" is one of the questions, there are at least a hundred questions of that degree of specificity. What a job our IRs have before them.
Dr. Sclafani, you must know I have been reading here for eight months and have envied everyone else presenting their MRV images, even when the images were dismissed as "crappy"! If you were inclined to share your thoughts on mine, it is here: http://www.thisisms.com/ftopicp-146167.html#146167
You have HIPAA permission to comment on this or any aspect of my case now or in the future.
Patient is a 35-year-old female presenting with severe fatigue, a history of foot drop (now recovered) and numbness (now recovered), slight cognitive dysfunction, general daily malaise, "heavy arms," EDSS 0 - 0.5.
actually, i would not think there is hippa issues discussing something on a public forum if the patient writes about it on a public forum.
looking at your mrv, i see lots of distended collateral veins and i do not see the central parts of either ijv. Nice to see the dural sinuses looking pretty good.. However i do not see well the truncular areas of the IJVs.
the MRV is nice to look at but does not change my approach at all.
This begs my question ... is MRV just a pretty picture, or is it useful to see where collaterals start? And IF there are collaterals, does that imply stenosis, or do we all have collaterals CCSVI or not?
in my opinion at the current technology, its just another pretty picture. Collaterals are interesting but its the main veins that are critical and mrv just does not show what needs to be shown, webs, duplications, the annular area, the azygos, the ascending lumbar.
Can I say I'm tired a lot and get an MRV or doppler and be a "normal" tested? To prove a point that I don't have CCSVI to some ...[/quoute]
i wouldnt get an mrv at this stage. i would get a doppler. if i had more than one abnormality i would want a venogram if i had symptoms.
Another topic, you've said May Thurner would not be an issue unless there was blockage of the azygous (as was the case with my wife) ... can you speak just briefly as to why? I assume because blood would go through the ascending lumbars to the azygous and then become stagnant due to azygous stenosis(due to the illiac being narrowed).
actually if the azygos is obstructed, flow would have to exit the spine through other vessels. these would include the ascending lumbars and the lumbar veins. as well as hemiazygos to accessory hemiazygos, etc.
David1949 wrote:Dr. Sclafani
Many years ago I had hernia surgery. Plugs were installed in the tears in the abdominal wall, one on each side about 3 inches either side of center and about 4 or 5 inches below the navel. I think they covered the plugs with a mesh which holds them in place. Would any of this stuff be in the way of the catheter for venoplasty?
drsclafani wrote:looking at your mrv, i see lots of distended collateral veins and i do not see the central parts of either ijv. Nice to see the dural sinuses looking pretty good.. However i do not see well the truncular areas of the IJVs.
the MRV is nice to look at but does not change my approach at all.
It's unusual to have problems in the central part of the IJVs, isn't it. I hope it proves to be treatable. Thank you for your thoughts.
cece, its irrelevant. pay it no mind. The image is not worth looking at and trying to assemble some conclusion. Its like doing a tasting of carrot juice right before drinking the champagne
There is a technique which attempts to progressively dilate underdeveloped veins as part of the creation of an arteriovenous fistula for hemodialysis.
First angioplasty, the doc used a 5mm balloon on my hypoplasic left jugular. The treatment of this vein was unsuccessful at this stage (immediate elastic recoil...I even relapsed). The next treatment, he used an 8mm balloon. I had sustained improvements after this treatment...though my vein is not as good as it was in the first few months after the 2nd angioplasty. I suspect the "annular" region of this hypoplastic vein is problematic also...but it's just too darn small for the doctor to closely inspect.
how small does a vein need to be to fall into the hypoplastic category? My right IJV was 8mm at its largest (and was down to 7mm after one month) I have seen good improvements despite this small vein. (it took an 18mm balloonto open the stenosis that existed in the small vein)
I need to go look at my reports and images again to ask better questions.
always look on the bright side of life
Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
