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Dr. X and I went through everything looking for answers. And he is one smart man.

1. I do not think this is doctor error. He has been doing this for 25 years, is well known in his field, has headed several IR/vascular intervention national organizations, and has been chief of an IR dept. at a top medical school. Dr. X is close friends with Dr Dake--for 25 years now. They have worked together.

2. What Dr. X performed on me was not really "rocket science" either. He made the incision in my groin, fed the catheter up to my lower jugular veins, and released the contrast dye to watch the blood flow before getting ready to go on to the ballooning. He released dye several times, having me hold my breath, release my breath, tighten my neck, change my neck position etc. and could not find the lower jugular vein blockages. As I said, I saw the video later--there was no blockage! The blood was flowing perfectly. He then pulled up my MRV scans from Stanford and pointed out the severe blockage that had been there 10 weeks earlier. He said there was no doubt the MRV showed pancaked lower jugulars (about 90% blockage).

3. Dr. X noted that I was in the same exact position during the MRV scan and the procedure he did.

4. I have not changed my diet, my exercise routine, added or subtracted new supplements or meds. I went from no exercise to no exercise. I don't eat much dairy or even gluten. Dr. X quizzed me about changes. The only difference is in Dec. I was taking Tysabri every 4 weeks. Shortly after I switched to every 8 weeks because of infections--which even persisted until the end of Jan.

5. Dr. X speculated that if stenosis actually comes and goes then perhaps instead of treating immediately, you wait 2 months and check again. And maybe check 2 months later again. It is interesting that almost every one of Dake's patients had the procedure the next day after the scans. But Dr. X also said he has no answers--just speculating about new surprising evidence. I don't think he had ever seen a stenosis "go away" before.

The only consistent thing is that the milder stenosis in my upper left jugular vein (which has a tiny little collateral vein system) was evident on the MRV from Dec. and evident during the procedure when the dye was released. Dr. X said that area would need a stent. But we had agreed beforehand to only use balloons and fix the glaring lower jugulars.

Anyhow.......very perplexing.

I will be interested to see what he comes up with or what he sees in 2 months.

prof8
Sorry if this has been asked before . . . . but can your remember how you were feeling (MS wise) when you had the testing done and there was stenosis vs now when they couldn't find it? Just wondering if your MS was worse when it was there.
tx
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Good question annad. I feel pretty much the same now as I did in December. Weird, huh?

.

WOW.

It might explain the odd unexplained recover. For example, the report last year of the wheelchair bound girl who became a wheel chair basketball star (I think) and then, over a period of time, made a complete recovery from MS. A stenosis which disappears, never to return. Perhaps yours will never return either. Let's hope so.

Prof8,
Really interesting. Were you on tysb before the test in Dec?

Yes, I had been on Tysabri for more than a year when I got the MRV in Dec.

mangio wrote:Prof8,
Really interesting. Were you on tysb before the test in Dec?

Prof8-

Thank you for sharing this information with all of us. So important, and so puzzling! Will be curious to hear what the next tests show in 2 months...

Pam

Again, no medical training, just trying to make sense of it.

If your vein was "pancaked", that would mean that from one perspective it would appear normal, and from anolther it would appear thin / flat. Without being told specifically otherwise, I assume the flouroscope used during the procedure does not rotate the view. A flat vein I would guess would look wide and ok in one of the planes of view.

shye wrote:so then Cure or Bust, what do you think accounted for the discrepency in your MVR's??

I "think" there is many different variations on MRI settings and techniques. There is one sequence from memory, where at one point the veins just appear to appear and it's not a slice.

CureOrBust wrote:Again, no medical training, just trying to make sense of it.

If your vein was "pancaked", that would mean that from one perspective it would appear normal, and from anolther it would appear thin / flat. Without being told specifically otherwise, I assume the flouroscope used during the procedure does not rotate the view. A flat vein I would guess would look wide and ok in one of the planes of view.

I don't know quite how to explain this but when Dr. X showed me the contrast moving through the veins he took the videos from several angles so he was able to guage a multiple-dimensional understanding of the structure and flow. He was the first to point out in that looking at only one image straight on, the vein could still be flat but look open and full. Hence he took multiple videos from multiple angles to be sure the blockage was no longer there and the blood was flowing through a completely round and open tube (the vein). This is how he determined the stenosis was gone. Maybe this is why I spent 45 mins. breathing in, breathing out, holding my breath, tightening my neck and twisting my head as he shot dye through.

Maybe you need another MRI to see if it shows up there again. If it does then we know that sometimes MRI can be decieving.

Did he take pressure readings?

Been chewing on this thread in my head since it was posted and have a couple of questions and a couple of observations.

Questions:

1) Was the Aqygos vein looked at in either of your exams?
2) Did either of the doctors give you details on the more mild upper stenosis as to how occluded it was or what the implications were?

Observations:

1) Like Joan, I wonder if that upper stenosis is congenital in nature, and I wonder if that particular area could cause problems downstream. What doesn't make sense is that the upper stenosis was only on 1 side, yet BOTH of your lower jugulars were occluded in the MRV. This kinda make me wonder if they are unrelated.
2) Without going back to reference the exact posts, I seem to remember at least a couple of people on here who tested positive (or Negative) at one point to only show the opposite in another test. Everyone has been quick to blame operator/machine error; however, perhaps its just the way it is. I wouldn't be surprised if its found out that some individuals (and I would guess mainly those less progressed) veins may be opening and closing. Its a very fitting piece of the puzzle if thats the case and would give reason to those who experience attacks and then remit.

OK, so lets speculate that this is going to be a common finding, that the veins do in fact open and close. Do you think that is normal behavior (the reason control groups in buffalo showed signs of CCSVI?)? Does it turn into MS when the body stops being able to 'open' up the veins on their own or when other environmental factors make it impossible for them to open on their own (for example, enough iron accumulation over time causing inflammation that prevents the veins from staying open?).

Personally I keep coming back to the Oligodendrocytes in MS and think there is a clue there somewhere that hasn't been put together. If its the death of the Oligodendrocytes that are in fact the source of immune response (as has been theorized), then could this triggered immune response be damaging the blood brain barrier, which could in turn cause periods of inflammation in the jugular region?

This could also play into the diet theory, take a look at this article on Aspertame:

http://www.bio.net/bionet/mm/toxicol/20 ... 03491.html

Could it be that CCSVI truly is the driver behind MS progression, but that CCSVI is only 'treated' with Stents and Angioplasty, while the cause of CCSVI actually lies within the immune response triggered by the death of oligodendrocytes?

This definitely gets one thinking....thanks for the post Prof!

EDIT: Is it possible that the upper stenosis (that may be congenital) be the root cause of oligodendrocyte issues, thereby in essence being the root of it all?

EDIT EDIT: Iron accumulation could be substituted for Oligodendrocytes in this discussion. If the more mild upper stenosis is causing slow build up of iron, could that be the trigger of the immune response or inflammation causing the jugulars to open and close. I wonder if an SWI would show more iron accumulation around the area of the upper stenosis that was found in both the MRV and Ultrasound.

EDIT EDIT EDIT: Could it be that a congenital malformity such as a mild stenosis of the upper jugular area could be ground zero in regards to endothelial cell damage causing issues with the BBB that deteriorate over time? When the initial damage is done to the BBB is that perhaps when a virus gets in and starts doing damage to the oligodendrocytes that in turn snowballs the damage with combined with the already existing BBB problem?

So many questions still, but I think we're on the right path finally.

great thinking Johnnymac!

1.
I remember someone said before, that when there were 2 narrowings close to each other, dr Simka didnt treat the lower one. Ha said that one is because of the upper narrowing (no blood flow = no pressure to open up the wall of the vein downstream), and needs no treatment. cant remember the name of the topic...

2. it would be interesting to make another MRV with the same machine (1st attempt) to see the situation on MRV

3. there could be a difference when someone goes in, or just take an MR shot from the outside... maybe going in could cause the blood flow to behave differently

very interesting topic though...