Venogram done... no stenosis

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

Venogram done... no stenosis

Postby jenf » Thu Mar 11, 2010 12:08 pm

So now what? Just got back from the hospital after having a venogram done. this IR was familiar with the protocol and procedure, so I trust he did everything right. My MRV had shown stenosis, but the IR advised me they are notoriously false, and that the venogram was the only way to tell fro sure. Ugh... I am beyond disappointed!!!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby MS_mama » Thu Mar 11, 2010 12:59 pm

Your location says you are in Albany--have you thought of having Dr. Mehta take a look?
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Cece » Thu Mar 11, 2010 2:35 pm

So sorry to hear this, jenf. It is odd that the MRV showed stenosis and the venogram did not. It might be worth getting a second opinion...although I know how hard it is to track down one doctor open to this, let alone two.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Rokkit » Thu Mar 11, 2010 2:38 pm

That makes no sense, jenf, sheesh what a pain. I don't remember many reports of Dr Dake finding a big difference between venography and MRV. If anything, venography is better at finding stenosis missed by MRV. I was able to get a CD of my venography, maybe you can get one too and try to find some other people to look at it. I mean there's no reason to doubt your IR, but it's just so weird. Sorry.
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Postby kc » Thu Mar 11, 2010 6:46 pm

jenf,

Maybe this has something to do with your relasping remitting status. Remember that oh God can't remember who at this time had a stenosis that "went away" when he got his next scans done? Someone on here will remember.
Remember the fat lady has not sung yet!

kc
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Postby lilsis » Thu Mar 11, 2010 7:06 pm

had you ever had ultrasound performed? it appears this is more important than mrv. no stenosis, but was there any mention of the valves in the internal jugulars? competent, incompetent, present at all? this may provide a clue, and what about the azygos vein? ccsvi is not only caused by problems with the internal jugulars....
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Postby shye » Thu Mar 11, 2010 7:08 pm

Jenf,

Dr. X at home (interventional radiologist) went in and discovered both my lower jugular veins are now completely open. The scan in Dec. showed them almost 90% blocked.

from thread of Prof8 http://www.thisisms.com/ftopict-10465.html
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Postby jenf » Fri Mar 12, 2010 4:16 am

Hi everyone,
And thank you for the responses... This doc was extremely competent, and I have no doubt that he performed the procedure properly. He has already tested/treated a few other MS'ers with stenosis; I just didn't have any. It's unlikely that anything would have changed since getting my MRV; I had it done at the end of January and my disease has been active (new symptoms) since December. The IR did advise me prior to going in that the MRV's are notoriously false... I just heard what I wanted to hear because I was too invested CCSVI as the answer. He also checked both the jugulars and azygous veins as well.

I think this just reinforces the fact that CCSVI will be the answer for many... just not all of us.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Location: Albany, NY

Postby costumenastional » Fri Mar 12, 2010 4:29 am

Jen,

it appears that you may belong to the non ccsvi group. As hard as it may be, it s good that you let us know. I am so sorry that things went like this for you...
Please, dont give up.

Finally, have in mind that Buffalo didn't manage to find stenosis to most of the newly diagnosed patients for SOME reason via the current protocols (CIS).
And you are newly diagnosed.
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Postby jenf » Fri Mar 12, 2010 4:48 am

Hi Costumenastional,
I participated in the Buffalo trial as well and thought going into this that I may in fact be one of those who did not have stenosis. The fact that I pursued it so vehemently was primarily to either be "fixed", or to move on.

I was awake during the venogram and do recall the doctor looking at the azygous vein as well. It is possible as this research moves forward that doctors will learn that CCSVI is in fact a result of MS, and not a cause... or like others have speculated, that MS is a combination of conditions that manifest in similar ways. In either event, I agree that it is good for others to understand this will not be the answer for all of us.

I think only time will tell at this point, and I have no regrets about getting the procedure done. I am disappointed; but I'm also glad I found out early so now I can reevaluate my approach... On to stem cells!!!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Location: Albany, NY

Postby costumenastional » Fri Mar 12, 2010 4:58 am

That's the spirit!

I deleted my azygos question cause we were writing at the same time.

I agree with you. The only thing i am sure of, is that ccsvi will help them to realize that what they call MS today is actually a whole bunch of different diseases to say the least.
At least we wont have to be on drugs that dont work for no reason.

What else can i say? Hang in there and please stay in touch.
The time of crisis will come for all of us eventually. And it s gonna be soon enough.
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Postby jenf » Fri Mar 12, 2010 5:23 am

Hi MS_Momma,
I was signed up for Dr. Mehta's trial... I went with this doc because he was able to get me in sooner. At this point, pursuing this any further seems like a moot point. This IR has treated a number of MS'ers already, having found stenosis in many; just not me! He gave me the green light to give out his info and will evaluate/treat others. He's in Albany, NY, but I know many will travel to the end of the earth to find a doc that will treat.... at least I was willing to!!!!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Posts: 106
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Location: Albany, NY

Postby costumenastional » Fri Mar 12, 2010 5:52 am

Jen, i was thinking... would you be kind enough to share with us some details concerning your recent diagnosis?

Where are your lesions located?
Spinal tap results?
Antinuclear antibodies present, or maybe other suspicious antibodies?

You know, the whole dril or whatever comes to you at this point.

All in all, would you say that you are a typical MS case?
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Postby jenf » Fri Mar 12, 2010 9:30 am

Hi CostumeNational,
Funny you should ask...because now looking back, the resident assigned to my case in the hospital wasn't convinced I had MS. In fact, the only test that supported it was the VEP. The resident assigned to my case was incompetent though, so I dismissed her findings and went onto three different top MS specialists for a confirmed MS diagnosis. None of them ran any new tests; just used what I had from the hospital to make the diagnosis.

Here's the summary of the resident's findings with regard to my hospital tests last April:

Among these three lab tests, only the VEP showed support for multiple sclerosis. CSF did not provide any evidence for multiple sclerosis. On the other hand, the elevated CSF white count to 23 is not commonly seen in Multiple Sclerosis, which seems to reflect a viral process. Considering patient’s history, her symptoms in February and April were essentially the same, which makes “two clinical separate attacks in separate time” questionable. In other words, it is not completely clear whether these two episodes were in fact representing one clinical event. In addition, there is no white matter lesion in her midbrain or pontine corresponding to her double vision (most likely right CN VI or palsy). So, at the time of discharge in April, the etiology of her double vision was considered unclear.


As I said, three other top Neuro's and one Neuropthomologist all diagnosed me within a few weeks of each other, but who knows... Maybe this is something else after all?? There are several other categories that have kept me from a perfect MS fit. I guess this may be a new avenue to explore? Hmmm....
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

Postby California » Fri Mar 12, 2010 9:59 am

Have you had Lyme disease testing done by a LLMD. Lyme and Ms have many overlaping clinical findings.
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