Received another opinion, and off to NIH tomorrow

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Received another opinion, and off to NIH tomorrow

Postby marcstck » Tue Aug 18, 2009 6:47 pm

With what's going on with Holly, this seems incredibly unimportant, but I'll be gone for a few days and wanted to post this before I left.

Just to review, the report that came with my CT scan said that everything was "within normal ranges". Doctor Dake reported over the phone that he saw rather severe occlusions (pancaking) in both upper jugulars. I asked him to send me a written account of his impressions, and received the following:

I reviewed the CD of your CT scan of the neck from July 23, 2009. The images show a dominant right jugular system with bilateral narrowing of both jugular veins at the C1-C2 level adjacent to the base of the skull. The narrowing on the left is more severe. These findings are consistent with the degree and location of jugular vein narrowing noted in other individuals with MS.


My dad is friends with the head of radiology at a hospital on Long Island (Winthrop Hospital), and he read my CT venography scans, specifically looking at the upper jugs. He said that there was a significant narrowing of my left upper jugular, but that the right appeared normal. He told me that the narrowing in the axial scans appeared striking, but was much less so on the sagittal scans. Still, he said, this was definitely an odd finding.

He also commented that if he weren't looking specifically for such abnormalities, he would never have seen them. A typical radiologist looking at a scan of the neck would very likely miss such narrowing.

He did find the research I forwarded to him very interesting, and thought that the theory definitely warranted further investigation.

I'm off to the NIH tomorrow, to be seen by the government doctors on Thursday for yet another full day of poking, prodding, scanning, and examinations. Along the way I'm supposed to spend some time with one of their radiologists looking at the CT scan.

I'll report back when I return...
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Postby Lyon » Tue Aug 18, 2009 6:59 pm

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Postby marcstck » Tue Aug 18, 2009 7:23 pm

Lyon wrote:That's nothing like unimportant regardless of when you post it.

I hope it later proves out to be right but I honestly feel congratulations are in order at this time.


Bob, are you congratulating me because the narrowing of the left jugular was confirmed, or that the narrowing of the right jugular was refuted?

Seems to me that this was a mixed report. This radiologist made the narrowing of the left jugular seem less significant than Doctor Dake did in his telephone comments, but he did say that there was abnormal narrowing. He also commented that he would have a hard time recommending stents being placed that high up in the jugulars, but didn't go into details...

I'd say the jury is still out regarding my scans. I'm hoping the NIH doctors will give me something definitive...
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Postby Rokkit » Tue Aug 18, 2009 7:24 pm

Good luck, Marc. It seems you have some consensus building regarding stenosis. That has to be encouraging. It will be very interesting to hear what the NIH drs have to say.

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Postby Lyon » Tue Aug 18, 2009 7:33 pm

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Postby marcstck » Tue Aug 18, 2009 7:40 pm

Lyon wrote:Hi Marc, I'm just super sympathetic to your progression experience and atypical "MS" and I can sympathize that you dearly would like reasonable answers.

I don't have anything personally invested in Stanford or Dake so I could care less who's right or wrong regarding where the stenosis are, but it sounds like your NIH person found stenosis and, regardless of what remains to be proven about CCSVI on another level, it's believable that inefficient removal of the body's poisonous byproducts is capable of creating the problems you're noticing.

With all that in mind, the sum total of what I was saying is that finding something "bad" right now, is good.

Bob


Bob, mucho thanks for your sympathies. They're very appreciated.

Just to be clear, this last opinion was not from the NIH radiologist, but from the head radiologist of a hospital here in New York. I'm off to the NIH tomorrow (Bethesda Maryland, about a 5 Hour drive from home), and will be seen by them on Thursday...
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Postby Sharon » Tue Aug 18, 2009 8:35 pm

Safe travels, Mark. It is going to be interesting to hear what the NIH doctors have to say.

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Postby prof8 » Tue Aug 18, 2009 8:54 pm

Marc, thanks for sharing with us. Did you get a sense of why the radiologist in NY would not recommend stents be placed that high up in the jugulars? Do you think he thinks it is dangerous? That it wouldn't be useful? Have a safe trip to the NIH. Looking forward to your report.
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Postby dignan » Tue Aug 18, 2009 9:03 pm

I hope the poking and prodding isn't with anything too pointy.
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Postby marcstck » Tue Aug 18, 2009 9:46 pm

prof8 wrote:Marc, thanks for sharing with us. Did you get a sense of why the radiologist in NY would not recommend stents be placed that high up in the jugulars? Do you think he thinks it is dangerous? That it wouldn't be useful? Have a safe trip to the NIH. Looking forward to your report.


He wasn't specific, but my sense was that he thought there might be some sort of danger involved...
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Postby marcstck » Tue Aug 18, 2009 9:47 pm

dignan wrote:I hope the poking and prodding isn't with anything too pointy.


oh, don't worry, it will be...
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Postby bibliotekaren » Tue Aug 18, 2009 10:21 pm

Marc,

Safe travels and hope your NIH experience is very productive in spite of sharp pointy objects. I too wonder about the concerns on high IJV stents.

Look forward to your report.

Donna
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Postby IHateMS » Wed Aug 19, 2009 4:49 am

Good luck Marc. I am at the point that I prefer sharp, pointy objects than latex-covered digits. :oops:
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Postby bestadmom » Wed Aug 19, 2009 5:26 am

Marc,

Good luck tmw at NIH, and today with the drive - hopefully not much traffic.

Involving your dad's friend is great - not only does he have a vested interest in doing the right thing for you and your family, but it helps our grass roots effort to get the word out, although if the NIH gets behind this, it will be explosive.

Michelle
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Postby LR1234 » Wed Aug 19, 2009 5:27 am

good Luck Marc x
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