This Is MS Multiple Sclerosis Community: Knowledge & Support

Yes, there are many things attempted

angioplasty
ultrasound surveillance followed by earlier aggressive repeated angioplasty
stenting
resections
covered stents
funnel shaped stents
reducing the number of synthetic grafts used.

While dialysis graft and shunt problems are different from ccsvi, they are also long term problems that require ongoing treatment....remember loss of all the veins leads to inability to perform dialysis and that is not compatible with life. We are constantly searching for answers for old and new questions.

no reason to thing anything different for ccsvi

Yes, certainly. Many thanks!

Deleted my silly question. found a pic that makes it obvious. It is the IJV's that drain blood from the cervical spine.

Forgive me.

Thank you.

I'd sure like to send a few neurologists your way for some lessons on "patient care". I think they could learn a lot from you.

Dr Sclafani, I am wondering if you have done any looking in the lumbar plexus area yet. Dr Zamboni has mentioned a problem in some PPMS patients regarding veins down there that have never developed at all, thus there is no way to treat. What do you think about this problem and have you seen it yet?

Wow Dr Sclafani thank you so much! I only just discovered this thread...
I have two questions:

1. My doppler exam in Katowice(A) and Ferrara(B) gave the identical result:(A)"the left internal jugular vein is occluded by pathologic valve in the junction with the brachiocephalic vein"(B) "si evidenzia a carico della vena giugulare sx stenosi a carico della valvola terminale prima dell'ingresso nel tronco comune." I think to have understood from the discussions two doctors had during my doppler that my valve is malformated and floating around in a "floppy" way, obstacling blood flow a bit like an irregular sieve, but not really stopping the flow completely and causing reflux(but I'm not sure). The diagnosis as described above would however suggest occlusion/stenosis...

=> Interesting you said: "If you have resistance to outflow from the brain, you will develop reduction of inflow. Inflow to the brain is a good thing." But I still do not understand, if no reflux (= underlying theory of CCSVI), what could be the damaging impact for MS of such a condition?
Would you think that intervention in this case can bring chances for improvement?

2. I have a similar question as Jak7ham9 below.
Would be interested in your view on the following strategy:
(FYI, I know my jugular issue, but I still do not know if maybe have azygos problem in addition, since had no MRV yet):

- step1: go to Poland for MRV, venography and if they find stenosis only angioplasty (without stent) as a first step
- step2: monitor potential improvements
- step3A: in case none, well at least I tried
- step3B: should improvements be vanishing after a while, when going for check-up to Poland after 6 months they would detect whether restenosis has occured, and if so, only then go for a stent.
- step3C: should improvements not be vanishing or only be vanishing in around 1-2 years , get later-on as soon as it's my turn within the 1200 people Bologna/Ferrara waiting list follow-up in Ferrara... although do not know...probably in 3-5 years will unfortunately be more realistic...so might need to go back to Poland or elsewhere....

Thanks so much for your views!

Steffi

Thank you Dr. Sclafani for taking the time to answer our questions! I've been lurking and finally felt compelled to say thanks. Your presence here makes it more comfortable for me to research and act on what I need to do. Would it be inappropriate to send you a virtual hug??

Patrice Wagner
RR dx'd '88

Dear Dr Sclafani, just to explain sthg. You may be wondering why I address these questions to you and do not seek advice locally. I have really tried my best to get local advice, but in Ferrara they are very busy (even to answer questions) and also my attempt yesterday at my local hospital in RN failed to get expert advice, as the angiology department had never heard of Zamboni and CCSVI (they obviously did not have the protocol). This, despite them not being far off from Ferrara...

The concluding message they provided in the report of my angiologic visit was that they could not perform on issues still under research and that "follow-up is recommended for specific therapy at the University centre". It's not that I blame anyone for this, it just illustrates that the experts in Italy are few and that as long as there will not be other supportive Drs/hospitals giving Zamboni a hand, he is obviously overloaded with too many requests...the University clinic of Ferrara can obviously not include all Italy in its intervention studies and find time to answer questions to all MS patients...I fully understand that.
That I managed to get a doppler-exam start Feb there was already an exception. I only got it since had proof of jugular valve issue from Poland. And unfortunately was not prepared at that moment to ask specific questions...I was told after the visit that I should be patient and not call them. That they would ask Zamboni to insert me in waiting list for the next step angio-/venography - he would call me for that once my turn, but that the list would unfortunately be loooong...and that I had external status.

This is why I cannot really express how much I appreciate your dedication and time to provide us with such helpful expert advice here!

Zeureka
those are complicated questions. I have committed to answering questions in a general way rather than a personal one. It is far too complicated to make specific recommendations on individual patient issues without knowning a great deal about your history, presentation, progression, imaging, neurological assessment, age, attitudes, etc.

QUESTION ONE:
So let me address the first issue you ask, namely the confusion about flow and reflux
REFLUX. Slow flow or no flow leads to vicarious drainage of the brain's blood through different pathways. The theory suggests that this large flow leads to harm to smaller vessels in the brain and that this leads to exposure of brain tissue to immune cells and to iron, leading to brain damage that leads to demyelinization and inflammatory plaques. This leads to electrical conduction problems that lead to symptom complexes called MS.
SLOWFLOW If there is resistance to outflow from the brain, this may lead to reduced inflow to the brain. That may lead to reduced oxygen delivery to the brain and cellular function may be compromised without oxygen. and it may ultimately be the cause of deminished brain size. Perhaps it is improvement in blood flow after angioplasty that explains the very rapid improvements in neurofunction that some patients experience. Clarity, return of sensation, etc sometimes are seen before leaving the hospital. Of course it could be placebo, but it could also be improved brain function because of improved brain flow.
QUESTION2
namely the debate of stenting and angioplasty. Firstly, we do not have ideally designed stents, there are concerns about migration because of the dynamic and considerable ability of these veins to dilate, and we do not have clarity of their long term outcome. It is therefore reasonable to attempt angioplasty first as it is safe and relatively simple. Repeating it is not a problem as the risk of the procedure is low.

Therefore I am inclined to treat by angioplasty alone first. See how things go. if symptoms recur, if stenosis recurs, then comes the decision making process that must be a plan devised by patient and doctor. If a patient's symptoms have imroved after angioplasty, cog fog, numbness, etc, then the decision is really a quality of life issue.

I have not really focused on lumbar veins yet. I have seen some abnormal veins there but not complete absence of these veins.
I think that the drainage of the lower spine is very diffierent from the upper spine and am studying this area more closely to answer someone's question but I don't want to speak about this yet

costumesnation
your silly question led me to read about this yesterday. It appears that you are NOT correct. See, that is why I joined this forum, to try to clarify, modify and correct some of the ideas patients have.

The spinal cord has an interesting venous drainage. There are small veins that exit the spinal cord and enter venous plexuses that surround the spine and vertebrae. (A venous plexus is a tangle of very small venous channels and lakes. )These plexuses connect up and down the spine. Some then drain out into larger more defined veins. These veins can drain upward into the brain and then back down the venous sinues to the jugular vein. There are also veins that connect the cervical plexuses to the upper jugular vein itself. The cervical venous plexus also drains into the vertebral veins and they connect to the subclavian or innominate veins. lower down in the thoracic spine these plexuses drain into veins that connect to intercostal veins and hemiazygous and azygous veins. Lower down still there are veins that connect the vertebral veinous plexuses to lumbar veins, ascending lumbar veins, and the inferior vena cava and lots of other veins.

thats me, joe the plumber

your feeling is correct. Stents are designed to go into straight tubes that taper gently as they go to the periphery. First designed for to bridge bile duct narrowins caused mostly by cancers around the liver, they expanded their application into arteries in the heart, extremities, kidneys and more recently the carotid arteries as a treatment of arteriosclerosis in those arteries. Applications also extended into veins, notably for dialysis grafts and fistulas designed to enable hemodialysis for kidney failure and more recently for the treatment of deep vein thrombosis of the legs and abdominopelvic veins.

The technique of stenting is to pick a diameter of stent that is about 10-20% larger than the diameter of the blood vessels. The stents stay in place because they exert radial force against the blood vessel wall.

Since atherosclerosis occurs in older people whose life expectancy is not that long, very long term performance of stents is not as critical as in MSers who, we hope, will live long, albeit challenged lives.

Now look at the problems in the jugular veins. The vessel gets larger as it goes in the direction of flow. The vessel can expand in diameter by 50% or more because of pressures applied in the venous bloood, or increased flow.....it is what we call a high compliance vessel. Also there is a lot of movement in the neck and this bending and twishing is a lot of force to apply to a stent for a long time. Will the metal fatigue. Will that lead to failure?
Finally stents become incorporated in the wall of the vein by growth of the inner level of blood vessel cells called endothelium over the wire mesh. ENDOTHELIALIZATION takes a couple of months. It ain't coming out If the stent clots off.

Yes funneling the stent so it enlarges as it gets closer to the heart sounds like a good idea, but we will probably see a lot of good ideas on how to keep the stent in place.

So, as a work in progress, i prefer to treat by angioplasty for the time being and rework with stents after angioplasty failure or stenosis recurrence, especially if symptoms worsened. More work, but a bit more cautious. If I find down the line that Zamboni's outcomes were better than mine, then i might change my mind.

Dear DrSclafani,
Thank you so much for the reply...this is MORE than an answer to a personal question to me and I promise to try to stick to technical questions now. You and Dr Schelling are the only CCSVI expert docs/professors I encountered so far that are committed to direct patient dialogue. You give me a lot of hope in the future treatment, since you seem to discover new things via your research every week (or even daily?!) !! This is fantastic! I'm missing the emotions smiley holding panel: GRAZIE! (and 3 times at least!!!)

Steffi

Dear Dr. Sclafani,

Do you know if any md, researcher or pharmaceutical company is working on developing stents specifically designed for venous use in ms? I suspect that because the potential market for this is potentially huge someone is doing this already. If so, after how long to you think they will be in clinical use.

Also I read of stents for arteries being developed that are resorbed completely after a number of years. Do you think these may be useful in CCSVI? This may alleviate the concern of stent fracturing and who knows, maybe the vein will remain open even after the stent is dissolved.

If I have the procedure done, I would want angio but not stenting. One significant concern I have is that a stent will have to immediately be inserted either because of thrombosis, rupture or signicant worsening of thrombosis. Are you able to give me, as a percentage, what the chances are of this happening? If angio is unable to relieve the obstruction and the vein immediately returns to its previous state, I would be content to not have a stent and wait for results of further research.


Thank you for answering my previous questions.

North