No stenosis.. time to go another avenue.

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

No stenosis.. time to go another avenue.

Postby SCGirl » Sun Apr 04, 2010 6:37 pm

Hey all,
I had my much awaited venogram and angiogram done Friday. (What better day than Good Friday, huh?!). I was saddened to see and hear that I had no stenosis. The doctor was great, as well as the staff. It's funny to say that you wanted to see abnormalities(!), but alas my veins and arteries were normal. How dare they be normal.. I was devastated, I had such high hopes. I applaud all of you on your research and determination. I have seen the many sucess stories and I believe in the treatment, but I have to go elsewhere. I won't be back on this topic, but I truly wish all of you the best. Thanks to TIMS and all of you for keeping the faith. I will be on other topics and pushing for other options. When one door closes, another one opens. God bless and keep up the fight!
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Postby Cece » Sun Apr 04, 2010 6:44 pm

I am sorry to hear this...I hope you will find answers elsewhere.
"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 shye » Sun Apr 04, 2010 6:45 pm

SCGirl-
wow, how very disappointing! Hoping to see on other threads that you do finally find an answer..
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Postby SCGirl » Sun Apr 04, 2010 7:16 pm

Thanks CeCe and shye! I have been called stubborn more times than I can count, so I am not about to give up this fight. Just have to look someplace else.
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Postby joanp » Sun Apr 04, 2010 7:19 pm

I think this shows that as numbers go up who are tested, we will find more ms'ers that do NOT have CCSVI.

I tend to think that CCSVI is present in some ms'ers but not all. And even those that have CCSVI, the puzzle remains at this early stage as to why people with CCSVI have different courses of MS - what elses is going on. Interesting times.

I am sorry to hear u did not have CCSVI but I agree with your march forward down another avenue. I saw in one of your posts that you had foot drop. I had that a few years ago after a severe attack and I went to a podiatrist. I could barely walk - more due to the pain than anything else. He made me an ankle orthotic and wow - what a difference that made. You might want to check that out for your foot drop. I recommend a podiatrist for that as family doctors are not the greayest to diagnose foot problems.

March onwards!
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Postby nicko » Sun Apr 04, 2010 8:01 pm

Its definitely disappointing, I would be devastated as well. But this is exactly why I'm trying not to get too excited about CCSVI at this moment. CCSVI may prove that MS is a number of completely separate conditions. It could also prove that MS is completely from circulatory problems. Maybe the blockage is not from stenosis in the veins of the neck but something else???

But just out of curiosity could you tell us all your symptoms? Did you have anything besides foot drop? say purple hands or feet??
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Postby civickiller » Mon Apr 05, 2010 12:53 am

ever hear of the mercury theory? maybe that could be it. mercury poisoning has the same symptoms as ms
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Postby trapatron » Mon Apr 05, 2010 1:08 am

We had heard here on TIMS before that it is an possible theorie that the vein-blockage temporary can go back by itselfs. Its neded more reasearch here.
It could be possible that You were unlucky to have Your veinogram done in an episode then You dont have those blockages.
Just a thinking in My MS-affected brain.
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Postby ErikaSlovakia » Mon Apr 05, 2010 1:33 am

I will repeat my short story.

I had my first Doppler made by Dr. Simka and Dr. Kostecki on August 7, 2009 - result pathological valves and reflux on my left side.

I wanted to inform some doctors in my country in Slovakia.
I had couple of Dopplers - my veins were perfect.
I had 2CTs with contrast dye - my veins were perfect.
I had one MRV with contrast - my veins were perfect.

I did not believe it of course.
After I had MRV in Zabrze in Poland twice - positive for CCSVI.
I got a stent on November 3, 2009.

It is new sickness and it needs really new ways of diagnosis. It is not very easy to find the problem.

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby RuSmolikova » Mon Apr 05, 2010 1:37 am

ErikaSlovakia wrote:It is new sickness and it needs really new ways of diagnosis. It is not very easy to find the problem.

That is exactly what I want to mention. See the latest paper from Zamboni:

(abstract on csvi.net):
Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls
CONCLUSION:
The use of MRV for diagnosis of CCSVI in MS patients has limited value, and the findings should be interpreted with caution and confirmed by other imaging techniques such as Doppler sonography (DS) and selective venography (SV).
Last edited by RuSmolikova on Mon Apr 05, 2010 1:38 am, edited 1 time in total.
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Postby trapatron » Mon Apr 05, 2010 1:38 am

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Postby JohnAm » Mon Apr 05, 2010 2:00 am

Hi SCGirl,

sorry to hear that - one question did you have a MRV/MRA or an invasive phlebography (venography)?
If not I would suggest you read Dr. Sclafani's thread here in its entirety, there could be other issues like valves and such (not visible on the MRV) causing problems...
just an :idea:


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Postby sou » Mon Apr 05, 2010 2:52 am

Same things here.

It took me a year and a negative MRV and Doppler to manage to convince my vasc. surgeon to perform a DSA invasive venogram. Only that revealed 3 major vascular problems.

Do not give up and, please, be as stubborn as you can till the accuracy of the answer tends to 100%.

I wish you the best of luck!

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby SCGirl » Mon Apr 05, 2010 5:40 am

JohnAm, I had an angiogram and a venogram with contrast. The doctor also measured my pressure throughout my veins and arteries. I felt as if this invasive procedure would show any stenosis as opposed to just an MRV/doppler. Am I wrong?
Nicko, my worst symptoms are fatigue and foot drop. I am also cold all the time. I dont have the "purple" feet, but I always have "chill bumps" when others are not cold or even warm. I am fortunate that I don't have worse symptoms, and I realize that, but I just know if the foot drop continues or gets worse I will no longer be able to perform my job.
Thank you all for the encouragement!
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Postby jenf » Mon Apr 05, 2010 6:21 am

Hi SCGirl,
I feel your pain!! I went through the venogram just a few weeks ago and ended up with the same results. And like you, I refuse to give up just yet! I think the only way to keep plugging along with this disease is to believe that with every every closed door, another will open. I, like you, experienced a tremendous let down after the surgery. Then, a day later, I brushed myself off and started to look into alternatives. At first, I started looking into the research at Vanderbilt University in TN. I decided it would be best to make certain that I know what I'm dealing with before I start popping antibiotics like it's my job! Even though I have been diagnosed by a number of different Neurologists, and I have many of the indicators and symptoms of MS; my hospital tests were less than conclusive. I enrolled in the Natural History study at the National Institute of Health. Their testing both MS'ers and people diagnosed with MS, but who have an unclear diagnosis. After only one visit, I know now it was the best decision I could have made. I guess my point is; even though we don't fit into the CCSVI category, there are other options out there!!
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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