Heard Back from the NIH

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Heard Back from the NIH

Postby marcstck » Thu Aug 27, 2009 11:58 pm

Just a quick recap: I've been going down to Bethesda, Maryland to be seen by the doctors and researchers at the NIH, to take part in a "Natural History of MS" study that they're doing. My case is so atypical that they've taken a special interest in it, and have done some additional testing (MRI SPECT, diffusion tensor scans, etc.).

Last Thursday I made my third trip down to the facility, and I had sensory evoked potentials, motor evoked potentials, and an MRI performed. In addition, I brought along my CT venography disc for the NIH radiologists to review.

After reviewing the disk, Dr. Dake told me over the phone that both of my upper internal jugulars were extremely narrowed, and in fact he used the word "pancaked". He recommended that I undergo the stenting procedure, although he made it clear that there were no guaranteed outcomes, and he couldn't even say that there was a direct correlation between the abnormalities and my neurologic disorder. The radiology report that came with my CT scan made no mention of any stenosis, and I consulted with the head radiologists of one of the local hospitals here, a family friend, who reported that my left internal jugular did appear to be strikingly narrowed, which which he thought was a very "odd" finding.

I spoke today to the NIH neurologist who is handling my case (one of the most impressive physicians I've ever dealt with), and she told me that my CT scans were generating a lot of interest down in Bethesda. My left internal jugular is indeed very narrowed, and though the right is slightly narrowed, it doesn't appear to be abnormal enough to be of any concern.

According to the NIH neurologist, upon first viewing my CT scans, the neuroimmunology team agreed that the left internal jugular was abnormal, but questioned whether this was of clinical significance. She explained that they discussed the wide variance in vascular system structure from patient to patient, which can be especially apparent when looking at veins, because they are much more pliable and apt to display variance than the much stiffer arteries.

Upon further examination and discussion, though, the NIH team decided that more investigation is necessary. My narrowed jugular is directly adjacent to the Cervicomedullary Junction, which is where my one troublesome lesion is located. The NIH neuro is very aware of the Zamboni research, and is going to consult with some other specialists, both inside and outside of the NIH, to try to determine the significance of my abnormal CT scan, and what, if anything, should be done about it.

I was advised that the narrowing of the jugular in question would be very difficult to stent, because it's located directly between two bony objects (I think one is a cervical disc, not sure about the other). This is in agreement with what the other radiologist I consulted with said, that he wouldn't recommend stenting that area of the vein.

I'm scheduled to go down to the NIH for at least one more visit, for a lumbar puncture and lymphopherisis (primarily for research, rather than diagnostic purposes), and the Dr. today told me that we should hold off scheduling that visit until she had made further consultations regarding my CT scan, because there was a chance that they'd want to do more imaging studies (most likely Dopplers, as they believe that MRV's are too prone to artifacting, especially when looking for areas of insufficient blood flow) to get a clearer picture of what was going on with my CNS vascular system.

In short, the doctors and researchers at the NIH are very interested in the abnormality that showed up in my CT scan, especially so since my case is very atypical to begin with. I was told to expect another call in a week or two to tell me what their continued consultations had suggested.

So, the saga continues...
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Postby Ernst » Fri Aug 28, 2009 1:45 am

This was interesting! Please, let the saga continue..
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Postby Loobie » Fri Aug 28, 2009 3:34 am

Marc,

It sounds like you are embarking on quite a journey of discovery. Man I hope you find something. Having MS is shit enough, but to have at atypical case? I mean we don't even know much about "regular" MS, let alone atypical. I really, really hope some answers are found that improve your quality of life.
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Postby bestadmom » Fri Aug 28, 2009 5:55 am

Marc, I've been wondering about you since last week and am glad I woke up to your post.

Knowing the docs at NIH are looking at your stenosis and running tests that aren't standard, make me feel they will help you. I bet you piqued their curiosity on CCSVI and it will broaden their research.

I hope they get to the bottom of your MS, if that is what you have, and help you. You've done everything you can to help yourself
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Postby cheerleader » Fri Aug 28, 2009 7:11 am

Thanks for the update, Marc-
Not sure if any of the docs at NIH would like to attend the conference in Bologna on Sept. 8th, but maybe they can get an invite and travel taken care of (even at this late date). They will have access to all the specialists looking at CCSVI in one location, and would be able to discuss the implications of your results with the doctors that have seen it and are treating it....plus it's Italy and there's a couple of nice meals planned :)

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tel. +39 051 19986650 - fax +39 051 19985661
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cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Fri Aug 28, 2009 7:21 am

.
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Postby Loobie » Fri Aug 28, 2009 7:53 am

Yes I do to a point. However, with my symptoms and their presentation, I don't think it's too atypical. It really did present that way as for about the first 5 I hardly knew I had it except when I would get hot. But that variant isn't that atypical as it's got a name: Uthoff's. So it was a bit weird at first, but seems to have settled into looking like pretty typical SP, ie no enhancing lesions but still progressing, albeit the progression part is not going on right now (Knock on BIG wood).
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Postby zap » Fri Aug 28, 2009 8:34 am

Any chance of some kind of response from Dr Dake about all of this? Or bringing him into the conversation with the NIH docs?
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Postby Loobie » Fri Aug 28, 2009 9:46 am

Loobie wrote:albeit the progression part is not going on right now (Knock on BIG wood).


Qualifier on the above statement. It isn't happening as far as I can tell, and for the last two years, I could tell!
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Postby mrhodes40 » Fri Aug 28, 2009 11:01 am

Wow Marc just as a recap of the opinions you've had on these CT scans are now 2 people saying normal including the original radiologist and a family friend MD, Dr Dake saying narrow and it is a fixable problem, now the NIH doc coming in saying narrow esp on the right and yes right at the damaged area, but probably not a good area for repair.

I am glad there is so much debate on the issue, that is good for all of us!
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Postby Jamie » Fri Aug 28, 2009 11:45 am

In my opinion if he has the blockages he has MS.
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Postby bestadmom » Fri Aug 28, 2009 11:58 am

[......, and I consulted with the head radiologists of one of the local hospitals here, a family friend, who reported that my left internal jugular did appear to be strikingly narrowed, which which he thought was a very "odd" finding.]

The family friend also found left jugular stenosis, so the only one who didn't is the original radiologist, who probably didn't know how to look for it or what to look for.

It would be amazing if the NIH people would go to Bologna. I hope Marc can get the invite to them.
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Postby marcstck » Fri Aug 28, 2009 5:11 pm

Loobie wrote:Marc,

It sounds like you are embarking on quite a journey of discovery. Man I hope you find something. Having MS is shit enough, but to have at atypical case? I mean we don't even know much about "regular" MS, let alone atypical. I really, really hope some answers are found that improve your quality of life.


thanks for the thoughts, Loobie. It is frustrating having a case that's considered so strange by some of the best doctors in the world. The general consensus is that this may be some rare derivation of PPMS, but it certainly does not fit any of the diagnostic criteria.

Just to clear up why I'm considered so atypical: my MRIs have always only revealed two lesions, one tiny one in my right peri ventricular, and a very large, problematic one at the very base of my brainstem. It's the brainstem lesion that is causing all my problems. These lesions have never enhanced, nor have they changed in any way in the 6+ years since they were first imaged.

I've never had any O-bands, nor have I tested positive for any of the other usual indicators of MS. According to some of the top neurologic specialists in the world, they'd have a hard time classifying this as MS, but it also doesn't fit any other of the differential diagnoses. Could be I have my own little syndrome going on here.

My MRI images would suggest that I suffered a inflammatory demyelinating eventabout eight years ago, and it looks like at that point I should have acquired considerable disability, which should have remained stable up until now. This is the impression of several radiologists who have viewed my scans without knowing my case history, and is based on the size and invasiveness of my C-spine lesion.

In reality, I've suffered a slowly progressive course of disease, starting out with a slight limp in my right leg in late 2002, and progressing to today when my right arm and leg are severely weakened and spastic, to the point of uselessness, and my left side is starting to see effects as well...

sorry for the wordy response, just wanted to clear up what I meant by "atypical"...
Last edited by marcstck on Fri Aug 28, 2009 7:30 pm, edited 3 times in total.
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Postby marcstck » Fri Aug 28, 2009 5:13 pm

cheerleader wrote:Thanks for the update, Marc-
Not sure if any of the docs at NIH would like to attend the conference in Bologna on Sept. 8th, but maybe they can get an invite and travel taken care of (even at this late date). They will have access to all the specialists looking at CCSVI in one location, and would be able to discuss the implications of your results with the doctors that have seen it and are treating it....plus it's Italy and there's a couple of nice meals planned :)

Conference Secretariat
Laboratorio delle Idee - Cristiana Canuto
via Santo Stefano 32 - 40125 Bologna, Italy
tel. +39 051 19986650 - fax +39 051 19985661
cristiana.canuto@labidee.it

cheer


Cheer, I've made the doctors aware of the symposium on September 8. I don't believe there are any plans afoot for any of the NIH staff to attend, but they'll certainly be looking at any data that's published as a result of the symposium.

As it happens, the NIH neurologist I'm seeing is a native of Italy, so she certainly isn't prejudiced against the "foreign" nature of the research...
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Postby marcstck » Fri Aug 28, 2009 5:21 pm

zap wrote:Any chance of some kind of response from Dr Dake about all of this? Or bringing him into the conversation with the NIH docs?


I haven't brought Dr. Dake into any of this, other than to inform the NIH doctors of Dr. Dake's impressions of my scan. I don't feel like dealing with a battle of diagnoses,

I have lots of experience juggling the egos of very notable doctors, and it can get very wearisome after a while. Not that Dr. Dake has a huge ego, but at this point I'd just prefer to let the NIH process work its natural course. I'm sure if they have any questions, they'd have no hesitation in calling Dr. Dake.

Based upon my experiences so far at the NIH, I have complete confidence in their abilities and their dedication to digging for answers. It's much to their credit that they are open-minded about the CCSVI theory, although they do view it with some healthy skepticism. The fact that I showed up with an abnormal CT venography has certainly piqued their interest...
Last edited by marcstck on Fri Aug 28, 2009 7:25 pm, edited 1 time in total.
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