This Is MS Multiple Sclerosis Community: Knowledge & Support

I sent Dr. Dake my CT scans last week, and received a call from him today. Although the radiology report that came with my CT scans concluded that everything was "within normal ranges", Dr. Dake says that he detects that the very tops of my jugulars, at the C1-C2 level, are almost completely occluded, "pancaked" in his jargon. He spent quite some time with me on the phone, and explained that while he could not guarantee that there would be any positive effect on my MS, he would recommend my getting these occlusions corrected, via stenting. This would involve a trip to Stanford, since there's nobody doing the procedure here on the East Coast.

As I do with all such serious medical decisions, I intend on getting second and third opinions. I spoke with my Dr. down at the NIH, and she cautioned me to be a bit skeptical. Occlusions such as the ones that Dr. Dake is describing shouldn't have been missed by the radiologist who originally read my scans, she said. I'm due to go back down to the NIH for further testing on August 20 and 21st, and she's scheduling some time with one of the NIH radiologists to read my CT scan and give their conclusions. She's not ruling out the possibility that the occlusions that Dr. Dake is seeing exist, but is urging some judicious caution.

In the meantime, on Monday I'm going to see my PCP, who ordered the CT scan after consulting with Dr. Dake. I'd like him to get in contact with the local radiologist who made the initial report, and have him take another look at the scans as well. I tried to get in touch with the local radiologist myself , but the hospital informed me that he could only speak to the Dr. who ordered the test. Probably bullshit, but why fight the bureaucracy when my PCP can just pick up the phone and speak to the radiologist directly.

I'll try to keep everybody updated as to how this all progresses...

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Marc
www.wheelchairkamikaze.com

I'm in a similar situation Marc...Dr D saw occlusions that other dr's at this time can not verify or see. I hope they scan lots of controls and start comparing them so we can see for sure if the occlusions are found only in MSers or are found in normal healthy people. I am going to have my veins looked at internally soon so I will hopefully be able to say for sure whether I have stenosis or not.

Thanks Marc, please keep us updated. It will be VERY interesting to see how the varying doctors observations/opinons will come to a mutual consent.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

Yes, please keep us informed as you find out more ... this subjective element is rather unnerving, when facing permanent surgery.

Thanks for posting, Marc. Is the position where the occlusions are adjacent to your one lesion?

Look at the roster of attendees for the meeting in Italy inearly Sept. The doc who runs the MS center at Stony Brook is going as is a vascular guy from Harvard. Hopefully there will be people on our coast doing this procedure in the near future.

With you being methodical and cautious, the timing might just work if the surgery should be done.

Michelle

Hi Marc -

I don't blame you for being cautious. It will be interesting to hear from the others if they spot the occlusions in your tippy top juglars. Bestadmom has a good question re: are the occlusions adjacent to your one lesion? That could be a significant clue.

Holly

Marc,

I really like your approach to things like this - getting various other opinions from knowledgeable people. From my limited experience, it can be a pain and requires a fair amount of energy. But by doing this, I think your helping with this research in a necessary way.


As for the question about whether the blockage was adjacent to the lesion. Remember that Zamboni's idea was that the blockages were causing reflux back into the brain or along the spinal cord, so the the damage to the CNS does not have to be near the venous blockage. In fact, this was one argument for why the MS disease process is not causing the stenosis, instead of the other way around. The nervous system damage is (relatively) far away from the stenosis, so it seems unlikely that whatever is causing the lesions is causing the blockages (and Dr Dake stated as much to me).

Marc...
interesting. Thanks for coming on and sharing. That "pancaking" effect is apparently what is causing confusion. Dr. Dake explained it to us while looking at some MRVs last visit. You can move the computer image 360 deg. From one side (often looking straight ahead), the veins look fine, open, BUT, when you shift the angle, suddenly you see that they are rail thin and crushed down flat, like a pancake, causing reflux back into the brain.

So, just wishing you luck getting this looked at in further detail. Bestadmom is right...more universities and doctors are getting involved everyday. Good news for everyone.
all the best,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

As it happens, my lesion is adjacent to where the supposed stenosis is, but this is really of almost no significance, as Dr. Dake confirmed. The jugulars drain the blood from the brain and central nervous system, and it's not as if a stenosis at one place in the jugulars would correlate to a lesion that corresponds to the location of the occlusion. It's unlikely that blood would be leaking from the spot of the stenosis back into the central nervous system to cause a lesion at that precise location.

Trying to make such a black-and-white relationship is really too simplistic way of looking at this thing. If there is something to the CCSVI theory, then reflux caused by the jugulars could be responsible for MS type lesions in various parts of the CNS, but expecting to see lesions in the spinal cord directly adjacent to a spot of stenosis in the jugulars is unrealistic.

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Marc
www.wheelchairkamikaze.com

Good Luck Marc.

Actually, the thinner, weaker collateral veins that form around the stenosis to take the load can leak and deposit plasmic particles (re:haemosiderin deposits in Zamboni's Big Idea paper). This can be another mechanism of local injury in the CNS by stenosis- maybe not applicable in your case, Marc...but we're seeing it in others (like Jeff)
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

He must be seeing that alot as that's how he described my left one on the MRV before he saw my weird collateral over there. He even used the "pancake" terminology.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Thanks for taking the time to share these details.

Can you see the "pancaking" Dr Dake saw, after speaking with him?

Also, did Dr Dake comment on the methods taken for your CT Venography? ie anything that could of been done better? I also plan on getting one done locally, and wish it to be done correctly. So any info will be a great help.

I cannot see the occlusions that Dr. Dake referred to, but I'm having a hard time making heads or tails out of the CT scan images. I'm pretty good at reading MRIs, but CT's are a different animal completely.

Dr. Dake didn't say anything about the quality of the CT venography itself. From what I understand, there isn't as much room for variation in CT scans as there are for MRV's.I think as long as you get a CT venography from the head to the diaphragm, with contrast, you should be okay...

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Marc
www.wheelchairkamikaze.com

Please do not stone me to death but there seems to be numeorus people on thid board with "pancakes" that can only be seen by Dr. Dake.
quotes:

Although the radiology report that came with my CT scans concluded that everything was "within normal ranges", Dr. Dake says that he detects that the very tops of my jugulars, at the C1-C2 level, are almost completely occluded, "pancaked" in his jargon.

He must be seeing that alot as that's how he described my left one on the MRV before he saw my weird collateral over there. He even used the "pancake" terminology.

I'm in a similar situation Marc...Dr D saw occlusions that other dr's at this time can not verify or see,

Thanks for your persistance Marc!!!