Update from NIH: I do have stenosis, I don't have MS...

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

Update from NIH: I do have stenosis, I don't have MS...

Postby marcstck » Mon Nov 23, 2009 7:49 pm

Sorry it's taken so long for me to follow-up on my visits to the National Institutes of Health and their reaction to my CT venogram that showed stenosis in my left internal jugular.

Just to review, for the newbies: I've had a diagnosis of atypical PPMS for the last 6 1/2 years. For most of that time, I've disputed this diagnosis.

My MRIs have always shown only two nonenhancing lesions, and only one that is of any consequence. This one lesion is at the base of my brainstem, and has not changed in size or appearance in the years that I've been having MRIs. My spinal fluid analysis has always been clear, with no O-bands, or any sign of any inflammation or immune system response.

My clinical presentation has been progressive from the start. Six and half years ago I first presented with a slight limp in my right leg, and today my right side is pretty much paralyzed, and my left side is weakening. I have bowel and bladder issues, as well as sensory dysfunction. My autonomic nervous system has also been affected by my brainstem lesion.

Through the years I've tried almost every mainstream MS treatment, and several experimental ones. None have put a dent in my disease. I've been seen by some of the best MS doctors in the world, all of whom have found my case to be puzzling, but who until recently were content to leave it in the "atypical PPMS" pile.

In July I started making visits to the NIH, in Bethesda, Maryland, to participate in a "Natural History of MS" study. They have found my case to be very intriguing, and have put me through an extensive regimen of diagnostic tests (multiple brain and spine MRIs, MRI SPECT, diffusion tensor imaging, spinal fluid analysis, motor evoked potentials, sensory evoked potentials, lymphopherisis, and multiple physical examinations).

These tests have indicated that my problematic lesion is an inactive scar that almost completely transects my upper cervical spine, that it shows signs of calcification, and that some of my nerve fibers have been routed around it. From the looks of it, I should have suffered considerable disability at the time of the "event" that caused the lesion, and most likely would have remained stable since. As I noted above, this is the opposite of how my disease has actually progressed, and there is a disconnect between my clinical presentation and what my diagnostic testing would suggest.

Spurred by an interest in CCSVI, and at the advice of Dr. Dake, in July I had a CT venogram done from my head to my sternum. The radiologist at the hospital where the scan was done found no abnormalities. When I sent the scan to Dr. Dake, he reported that he saw significant stenosis in both of my upper internal jugulars. I then had the scan read by a family friend who is the chief radiologists at one of the local hospitals here in New York. He reported stenosis in the left upper internal jugular, but said the right was normal. I took the scan with me to my next visit to the National Institutes of Health.

The radiologists at the NIH examined the scan and confirmed that I did have stenosis in my left internal jugular, but not in the right. They held onto the scan for further examination, and wanted to consult with other research physicians both inside the NIH and at outside facilities to determine its relevance to my case.

During my last visit to the NIH, in October, I learned that the NIH neuroimmunology team had added a neuroradiologist, in large part to study the CCSVI phenomenon. Although they remain skeptical, they do believe the theory warrants further investigation, and will be conducting their own studies in regards to CCSVI. I was told that several NIH researchers had attended ECTRIMS and had left interested but unconvinced by the research presented by Dr. Zamboni. Still, my showing up with an abnormal venogram intrigued them, and help kickstart their own efforts in investigating CCSVI.

I was also informed that after careful consideration by the entire neuroimmunology team, the NIH does NOT think that I have MS! They don't know what neurodegenerative disorder I do have, as there are literally dozens of conditions that can cause progressive neurodegeneration, and I've tested negative for those that can be tested for. Unfortunately, none of them have any effective treatment.

The NIH does want to further investigate whether my stenosis is relevant to my disease. They are particularly intrigued because my jugular stenosis is directly adjacent to the area of my spine that is damaged. They told me that the fact that they don't believe I have MS makes them think it more likely that the stenosis might be responsible for my condition, since they can find no other reason to explain it.

I was ordered to have a neck MRI, to see if there are any soft tissue abnormalities that might be contributing to the vascular problems. I had the MRI done last week, and I'm currently awaiting results.

The NIH team told me that my stenosis is caused by a bony structure, is very high up in my skull, at the C1 one level, and would be very difficult to stent. They have adamantly and repeatedly warned me of the dangers of placing stents in the cranium, and referred me to studies done in the late 90s of endovascular surgery into the carotid arteries that resulted in a number of brainstem hemorrhages.

As we are all too painfully aware, one of our own tragically died from just such an infarct. The NIH docs knew of of this recent terrible incident, and told me that research conducted in the late 90s revealed that these hemorrhages could be directly attributed to endovascular surgery, although admittedly that surgery was conducted on the arteries. The NIH contends that venous surgery could be even more problematic, because veins are less robust than arteries, and thus are much more likely to tear. They have urged me to not elect to undergo such surgery until they have determined that the there is a relationship between my stenosis and my neurodegeneration. Here is an abstract related to the late 90s studies:

http://www.ajnr.org/cgi/content/abstract/21/10/1911

The NIH is currently evaluating my neck MRI, and will decide on a plan of action after that evaluation. Most likely, additional imaging will be done to ascertain a more precise picture of what is happening in my cerebrospinal vascular system, and then a decision on what kind of intervention, if any, should be attempted.

On a specific topic of CCSVI, I'd say that the NIH is interested but not nearly convinced. I do find it very encouraging that they are interested enough to have decided to investigate the theory themselves. They are currently designing study protocols, and expects to have something started within the next six months.

Incidentally, my local neurologist, after consulting with the NIH, is hesitant to back off of the MS diagnosis, based strictly on my clinical presentation. He's also extremely skeptical of the CCSVI theory, although he was slightly more open-minded about it than I expected him to be. As many of us are discovering, resistance to the CCSVI idea within the mainstream MS community will be intense. Hopefully, studies currently underway at the University of Buffalo, in future studies like that being contemplated at the NIH, will produce results that will cause a seismic shift in the thinking about MS.

On a personal level, although it has validated my doubts about my diagnosis, the NIH's opinion about my disease has also been quite disquieting. I'm still trying to wrap my mind around my "new normal", and I'd really like to to reconcile the opinions of the NIH and my primary neurologist to arrive at some kind of consensus. I'm hopeful that the NIH will find a connection between my vascular issues and my neurodegenerative condition, and also undertake an intervention to correct it. If they find no such connection, I'll have some difficult decisions to make regarding the course of my treatment. My disease, whatever it is, continues to progress unabated, and time is definitely of the essence...

Sorry about the length of this post, there was just a lot of information to convey. Hope I haven't put anyone to sleep...
Last edited by marcstck on Mon Nov 23, 2009 10:33 pm, edited 2 times in total.
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Postby Lyon » Mon Nov 23, 2009 8:19 pm

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Last edited by Lyon on Thu Nov 24, 2011 10:41 am, edited 1 time in total.
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Postby zap » Mon Nov 23, 2009 8:29 pm

Wow, didn't put me to sleep at all - fascinating update - if disquieting. First of all - wishing you luck in your quest - it seems that every answer you get is opening up still more questions. It must be frustrating, but your calm determination is inspiring.

As an admitted drinker of the CCSVI kool-aid, my inclination is that perhaps you are a case of "atypical CCSVI" - and I'm wondering if the iron levels in your brain can be checked?

It COULD be a coincidence that you have something so similar to MS and also have at least one blocked jugular vein (I'd love to have Dake take a second look/explanation at the other one BTW) ... but I dunno. Given the tight correlation reported between such stenoses and MS - and the LACK of such stenoses and 'non-MS,' I would not rule it out just yet as a diagnosis.

Regarding the dangers of stenting ... while I won't argue with the NIH about the possibility of stents inside the cranium, I would like reassure myself and others here by pointing out that the dangers associated with cartoid stents do not seem to apply to the venous side of things.

As the abstract link stated, the presumed mechanism leading to the rare post-stent intracranial hemorrhaging was "cerebral hyperperfusion" - which is the very thing that opening the drainage up should help prevent ... and I see no way that larger diameter outflow could cause it.

Just my layman's 2 cents, hope it is not a waste of your time. Thanks again for the update.

Gabriel
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Postby Rokkit » Mon Nov 23, 2009 8:45 pm

Man, Marc, you've really been through it. You are to be admired for your perseverance in getting to the bottom of your situation. Your efforts with the NIH will not doubt contribute to greater understanding of CCSVI.

As we are all too painfully aware, one of our own tragically died from just such an infarct. The NIH docs knew of of this recent tragic incident, and told me that research conducted in the late 90s revealed that these hemorrhages could be directly attributed to endovascular surgery, although admittedly that surgery was conducted on the arteries.

I would like to remind readers that the doctors who were actually in charge of the care and actually saw this patient at the time of the tragedy, all agreed that the stenting procedure was not the cause.
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Postby Terry » Mon Nov 23, 2009 9:02 pm

Marc,
I zipped off to your blog to see what you had to say there. It was worth the trip. I had wondered about your eyes, and I found the info I was looking for. Should I say "I'm sorry" for laughing at your plight? I sure hope the eye doc can get you sorted out!
About the MS diagnosis and CCSVI- Waiting to hear more. Wishing you answers. Wishing you healing.
Terry
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Postby Ruthless67 » Mon Nov 23, 2009 9:05 pm

On the contrary, marcstck, I'm fascinated by your journey for answers, as will be quite a few others on this site . :)
My Ophthalmologist diagnosed me in 1997 when I came to him with optic neuritis in my right eye, he sent me for a MRI but unlike you and many other folks I haven't had any further tests done, and I mean none! But I have plenty of the MS symptoms like you. And my Neurologist had me doing the Avonex shots. But my Osteopath said he didn't think I had MS and when I asked him why he felt that way he said "He didn't believe that MS was a true disease.” Then recently I heard about Delvic’s Disease, which has the same neurological symptoms. :roll:
So I wish I had more answers. But marcstck, if we knew today that we definitely have MS, would we be any better off? I mean they don’t know what causes it, and they don’t know how to cure it”.
At least you have conformation of one stenosis, so even though it’s in a tough spot for stenting, you at least have a reason for your symptoms that makes some sense.
I have my paperwork in to Stanford and am waiting for a schedule date for the MRV. I want to know too if I have any stenosis, because that makes sense to me!
I personally feel that MS is not a “disease” either. But just a lot of similar neurological symptoms that are individual specific, being thrown together in one huge pile and called “Multiple Sclerosis” because they don’t know what’s causing them or how to cure it and there are too many of us not to try and categorize us. Anyway, I’m probably a Looney, dribbling on like this about utter nonsense. 8O :? :roll:
But you made two points in your personal level paragraph that all of us here at,This is MS, deeply feel, hope for and like you, just aren‘t quite willing to give up the good fight for just yet.
I'm hopeful that the NIH will find a connection between my vascular issues and my neurodegenerative condition, and also undertake an intervention to correct it.
My disease, whatever it is, continues to progress unabated, and time is definitely of the essence...
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Postby CureIous » Mon Nov 23, 2009 9:39 pm

Marc, you could talk about the petunias all day and we wouldn't get bored! We are all squarely in your corner regardless of how this thing progresses. Question: would it even be in the cards here to consider angioplasty as a "taking it a bit slower" alternative to cranial stenting?

I concur I think getting tested by Haacke for Fe deposition might show something indeed!

Whatever it is, you are truly in a pioneer category like none other here, and we all hope you get something somehow someway.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Mon Nov 23, 2009 9:58 pm

Marc-
thanks for your thorough explanation. I'm at Stanford now, waiting for Jeff to come out of his tune up, head is kind of preoccupied, but reading about the high blockage at C1 and the bony structure brought to mind this young man-

http://www.thisisms.com/ftopict-8515-joel.html

Have the docs seen anything like this in your case??
I'm still holding out for more answers for you, dear friend.
Thanks for checking in and sharing your journey with us.

Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Nov 23, 2009 10:19 pm

Wow,Marc good update and thanks for taking the time. What a strange place to be in. I am sorry for your conundrum regarding having stenosis and a strong recommend to not treat it. I just can't imagine being in those shoes.

I wish you well and hope something breaks your way soon that gives you an option of some kind.

Thanks for keeping CCSVI in front of them.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Mon Nov 23, 2009 10:52 pm

Marc can you please respond to my query here http://www.thisisms.com/forum-posting.html
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby marcstck » Mon Nov 23, 2009 11:31 pm

mrhodes40 wrote:Marc can you please respond to my query here http://www.thisisms.com/forum-posting.html


Marie, I clicked the link provided but it takes me to a blank template page. Are you sure you copied and pasted correctly?
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Postby whyRwehere » Tue Nov 24, 2009 2:58 am

Thanks for the update, and I hope they agree on some sort of intervention for you. What about the azygous? Did they have a look at that? It's more than interesting that your lesion is at the same level as your blockage.
Please keep the updates coming and I'll wish for the best for you.
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Postby mrhodes40 » Tue Nov 24, 2009 8:42 am

Marc it was the "False Dopplers" thread. I must have copied the link from the "reply" page not the main page, :oops:

I didn't want to hijack this thread but wanted some more information about the scans.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby LR1234 » Tue Nov 24, 2009 8:58 am

Hey Marc,
Very interesting post, thank-you for taking the time to write in such detail.

The thing that struck me is when you said

"They are particularly intrigued because my jugular stenosis is directly adjacent to the area of my spine that is damaged. They told me that the fact that they don't believe I have MS makes them think it more likely that the stenosis might be responsible for my condition, since they can find no other reason to explain it".

That tells me that even though they are skeptics about CCSVI they are not ruling out the fact that stenosis can/might cause neurological issues and lesions.

The fact that they now don't believe you have the condition which we all call MS suprises me....what is MS anyway?? I think we are all atypical as no two MS sufferers have the same symptoms or respond in the same way to treatments. Maybe you just have CCSVI, maybe we all have CCSVI??[/i]
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Postby Shannon » Tue Nov 24, 2009 9:12 am

I would have responded just as the above poster has, that there are many of us with such an atypical case of "MS" that perhaps none of us has "it," whatever "it" is. :wink:

I have had only cervical spine something-or-other going on for over 15 yrs. I have various symptoms and relapses from time to time from the same event. I have more trouble on my left in the arm area and more trouble on my right with the legs. I hear cracking in the area of the "lesion" everytime I move my head, as if there is calcification happening there or something.

I have a dx of MS, though it has been discounted and re-accounted for over and over again. :roll:

Thank you for your post. It was a very interesting read! I hope you get the answers you need, and soonmer rather than later.
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