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Now I'm wondering what to do?

I have valve issues on both sides and I don't really understand how they are resolved anyway? With Angioplasty somehow?

But, will 'repairing' them cause more problems?

I'm glad you are ok Rici and it's great to see your website. Very interesting development!

Claire

ClaireParry wrote:Now I'm wondering what to do?

I have valve issues on both sides and I don't really understand how they are resolved anyway? With Angioplasty somehow?

But, will 'repairing' them cause more problems?

I'm glad you are ok Rici and it's great to see your website. Very interesting development!

Claire

Contact our good guardian angel. www.ms-info.net . Dr Franz von Schelling. In my case, all predicted. Particular complication. He is the best specialist in the world, and a very good man. I have solved the problem.
Regards
Rici

ClaireParry wrote:I have valve issues on both sides and I don't really understand how they are resolved anyway? With Angioplasty somehow?

I think valve issues are dealt with by angioplasting the valve (so that the valve no longer functions). The exact figure is on here somewhere but I think it is around 10% of people are born without vein valves in their jugulars...so it should be okay...but maybe we will find out differently. I am hoping that my own CCSVI is simple and treatable. Valve issues has been said to be one of the better issues to have (because it is easily treatable with angioplasty and does not recur).

Dr. Schelling's wrote
" Spread of Acute Rises in Central Venous Pressure into the Brain?
Any momentary excess central venous pressure tends to revert the flow in any venous drainage which is not guarded by competent valves. If a venous drainage system lacking competent valves is not vented by venous anastomoses (lacking opposing valves) and its pathways are nowhere compressed, regurgitant blood can most easily and rapidly be pushed back in any affluent vein as far as its outermost tributary vessels.
But so long as its circumvallation is intact and nowhere substantially yields to pressure, the craniovertebral space can accommodate regurgitant blood volumes only as long as a commensurate venting, i.e. evacuation of blood from separate venous drainages of cranial cavity and spinal canal, is possible. If back-jets into different cerebral or spinal venous drainage systems compete, length and flow resistance of the respective venous pathways will also influence the pressure load to which walls and neighborhood of the involved veins will be exposed.
Skull radiographs of supposed victims of multiple sclerosis, showing striking widenings of the main venous passageways out of (and into) the cranium first stirred the present author's particular interest in the diverse anatomical pathological specifications of multiple sclerosis (119). A closer scrutiny of the truly unique post-mortem observations of multiple sclerosis led him to the conclusion that the specific cerebral changes evolve under the following circumstances and in the following ways:
The first prerequisite for plaque veins' injurious activities appears to be a disproportionately severe valvular incompetence of that internal jugular vein by which these plaque veins are specifically drained (Plate XIV , figg. A, B). Via this vein regurgitant blood then must be conducted into a relatively minor intracranial catchment area – meaning, in a classic instance of cerebral multiple sclerosis, directly up into the straight sinus affluents. Provided there are no venous anastomoses strong enough to provide for the involved venous pathways' sufficient venting, venous regurgitations of injurious intensities into the straight sinus’ affluent veins must occasionally result (119,120).
The remarkable functional isolation of the straight sinus system of venous drainage has been consistently illustrated not only anatomically (9,120), but also – more dramatically -- in the literature on the disastrous effects of (especially thrombotic) straight sinus occlusions. The evidence presented demonstrates that, if the venous outflow through the straight sinus is blocked, the collateral venous drainage from the brain's central parts tends to decompensate under the mere perfusion load of blood circulation (). It becomes clear that the potentially far more massive overloading of the straight sinus affluents by intense venous back-jets can certainly not be expected always to be dissipated in a harmless fashion.
Apart from their typically being limited to affluents of the straight sinus, the brain plaques of multiple sclerosis expand from only certain small section(s) of a plaque vein's surface. The question arises as to what may limit and localize the particular venous regurgitation effects. A consideration of the acute, both absolute and relative rises in intra-abdominal and intra-thoracic pressure reveals the existence of a number of factors which can limit a spread of venous regurgitation into particular cerebral veins. The primary limiting factor against a strong retrograde venous invasion of a particular part of the brain lies in the rapidity with which the thrust of any correspondingly localized venous regurgitations is counterbalanced by separate competing venous regurgitant and ordinary arterial flows into the craniovertebral space. A regurgitation into particular cerebral veins may also end precipitously, due to an exhaustion of its own volume or, in cases involving a larger intracranial venous domain, because the veins providing for a venting of the craniovertebral space are emptied too quickly. Finally, the ordinary course of trans-diaphragmal pressure gradients makes it probable that venous regurgitations into the brain will often be stopped by competing venous back-jets from intra-abdominal collecting veins into the epidural vein plexus of the lower spinal canal.

The Development of Venous Back-Jets into the Brain
The conditions predisposing to injurious venous back-jets via one internal jugular vein into the brain are rather complex, and research must be initiated to directly determine when and how such potentially disastrous events take place. If the venous drainage of the straight sinus is critically isolated and the other venous tributaries of the large collecting veins of the trunk are guarded by competent valves, potentially disastrous back-jets of central venous blood will begin as soon as the valve of the straight sinus-related internal jugular vein has been burst through, become too distended, or if its valve-leaflets have critically shrunken.
However, this is only one requirement for the occurrence of potentially disastrous venous back-jets into the brain. The presence of opportunities for sufficiently massive venting effluxes out of the craniovertebral space is equally necessary. As soon as the venous back-jet has become established, it will always tend to become more severe -- simply because of its continual "washing out" of its own pathways into, and of the channels of concurrent venting effluxes out of, the craniovertebral space. Thus initially harmless venous regurgitations may, sooner or later, reach injurious intensities.
The physical impacts causing "Dawson's fingers" and "Steiner's splashes" thus appear comprehensively accounted for."
http://www.ms-info.net/evo/msmanu/956.htm#level_5_1
Regards
Rici

Thanks Rici, this is very interesting to reflect upon. I will ask my local hospital angiologists next week about how they think valve problems can be treated and if angioplasty as applied now is with limited risk.

I have a left jugular valve problem (and you mention that Schelling pointed out problems in particular to right jugular valve issues). I would really love to ask Zamboni's team this question of whether opening that valve could bring unwanted imbalance to blood flow in other veins, but problem that difficult to get through with such questions to them... maybe the body is already so used to the valve blocking blood flow in one jugular that indeed a change can bring positive effects, but also some other unexpected side-effects?

Lets hope the specialists in my local hospital are specialists enough to be able to give me an answer...they might say: this is why more research is needed and you should wait !

Steffi

Thanks Rici,

I found Dr Schelling's article and work very interesting. He's way over my ability to completely understand all that he wrote, but I did glean some good information from reading it.

I'm still waiting on a clinical write up from my diagnostics MRV and the flow report from my venogram. But I was told that I had Congentially Malformed Valves, which could be treated by angioplasty.

I was excited about that diagnosis as it meant no "stents in my veins" but now I'm wondering about the complications Dr. Schelling addresses when he spoke with you. "He told me I won't be the last one affected by complications caused by eliminating jugular vein valves. Two other people have similar problems after right vein angioplasty."

Currently I'm on the list to be included in the Stanford Trials, should they indeed procede. Now I'm wondering if that is such a good idea. Maybe I should just "cool my back-jets" until more research is done on how to correct the valves without causes additional or new problems.

Am I understanding Dr. Schelling correctly Rici?

Thanks for all of that information, Rici.

It is a lot to think about while heading into the treatment room, and a lot of questions in the consultation. I can hear myself now - Okay Doc, I'm hoping that you can just do a balloon job. I don't want stents, unless the vein won't stay open. If I need a stent, I want the inert carbon 7 cell slotted with struts bio-degradable number with the bovine pericardium sleeve and heparin infusion. You do have those in stock, don't you? Oh, and leave my valves alone, unless they are facing North, where they should be facing South...

They will probably kick me out of the OR.

Johnson,
lol that's funny!
I doubt they'd kick you out but they may just put you under to shut you up! lol
best wishes!

Yep Johnson post, I also start to get confused on this...I think IF one goes for it now, probably one has little choice all depending on the circumstances.

I describe my current situation, so others can use my experiences, learned on my pitfalls and drawn conclusions.
Regards
Rici

Rici wrote:I describe my current situation, so others can use my experiences, learned on my pitfalls and drawn conclusions.
Regards
Rici

Thank you so much Rici - your posts are really VERY helpful ! And "in bocca al lupo" (= wishing good luck in Italy) on further improvements!

Steffi

Ruthless67 wrote:Thanks Rici,

I found Dr Schelling's article and work very interesting. He's way over my ability to completely understand all that he wrote, but I did glean some good information from reading it.

I'm still waiting on a clinical write up from my diagnostics MRV and the flow report from my venogram. But I was told that I had Congentially Malformed Valves, which could be treated by angioplasty.

I was excited about that diagnosis as it meant no "stents in my veins" but now I'm wondering about the complications Dr. Schelling addresses when he spoke with you. "He told me I won't be the last one affected by complications caused by eliminating jugular vein valves. Two other people have similar problems after right vein angioplasty."

Currently I'm on the list to be included in the Stanford Trials, should they indeed procede. Now I'm wondering if that is such a good idea. Maybe I should just "cool my back-jets" until more research is done on how to correct the valves without causes additional or new problems.

Am I understanding Dr. Schelling correctly Rici?

"Am I understanding Dr. Schelling correctly Rici?" <- Yes

We should be thankful there is dr. Schelling, so he can point us to the right direction and depict the issues nobody else would. He discussed the solution with me so I have the way out now.
Regards
Rici

Rici,
Thank you for sharing your experiences with us. It seems there is still much more CCSVI research to be done by doctors regarding the treatment.

I think this only serves to emphasize that there is still much to be learned about how to treat vein stenoses and that it may be premature for people to even be considering this at this time. I am still so surprised at how many people so early in the disease process with little to no disability are undergoing this given how many unknowns exist.

All the more reason for us to keep our voices heard so that research picks up and treatments can be developed that minimize risks of further injury to us.

hope410 wrote:I think this only serves to emphasize that there is still much to be learned about how to treat vein stenoses and that it may be premature for people to even be considering this at this time. I am still so surprised at how many people so early in the disease process with little to no disability are undergoing this given how many unknowns exist.

All the more reason for us to keep our voices heard so that research picks up and treatments can be developed that minimize risks of further injury to us.

Just some spontaneous thoughts on this (I change my view every day!):

I think one needs to be aware that if going for it, it is like participating in a trial. This is never without risk. However, trials are necessary to move forward in research. Weighing the risk against potential personal benefit for participating in a trial (and paying for it out of your own pocket, in a way I now understand that this is how it works outside Italy!) is then a personal decision. For example, Vogl claims he does it under research conditions, but when one calls to participate in a trial, the answer of his Secretary is that they only do it upon payment. In Italy they do it within an approved research trial arrangement approved by an ethical committee.

However, that Zamboni did the ballooning on his own wife as the first patient in the history of CCSVI (and she wasn't at worst status of disability either) makes me think that he at least strongly believed the risk of ballooning in veins to be minimal. Stents is another issue...and also completely new issues (unfortunately like Ricci...I'm really sorry for this) may still occur.

But problems did not as yet, it seems, occur in Zambonis patients that only got ballooning. And this after some years now. Also Zamboni continues his research due to improvements in his patients after ballooning. He said in a recent interview that the effect of intervention does not depend on RR or other form of MS, but that the chances for perceived improvements are higher at a lower level of disability. The logic behind this would be that symptoms caused by more recent damage may have more chances to repair, as larger already long-term damages, which are more difficult to repair. Not excluding improvements of certain symptoms in more disabled persons though!

Maybe this explains why less disabled persons (including me! Still walking, but not that I am feeling great though...) have hope as have those that are more progressed and obviously them, as feeling worse, feeling the need more urgently. There is hope for all for improving our quality of life, even if maybe only minor by getting rid of fatigue, improving some motoric functions and sensitivity issues, and most importantly: reducing the incidence of relapses for the future !

... and time in MS is precious. The diagnosis of MS inevitably can cause anxiety of progression and an uncertain future. I would think, at whatever stage. I live with it the best I can, trying to think it positive, doing diet/exercise and other things. And thanks god, seem to have a relatively mild form of RR MS (with fatigue and permanent hand/feet insensitivity issues), so still working and my MS is still invisible.

But CCSVI is just part of the positive thinking part now ! And do not know if can wait 2 or more years to pick this chance...