VENOGRAM DONE!

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

VENOGRAM DONE!

Postby leetz » Sun Feb 07, 2010 9:25 pm

well had venogram done and they found absolutely nothing! i know i have ms for sure because they did a lumbar puncture and tested my spinal fluid before diagnosis...so no CCSVI and the dr. that did the testing (he would prefer for me not to mention his name just yet) is head of the radiology department and WAS very interested in CCSVI, he even talked to Dr.Dake before hand...

NOW I FEEL LOST!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby sou » Sun Feb 07, 2010 9:34 pm

Don't lose hope so fast, leetz! No need to feel lost, yet. It has taken me a full year to convince my doctors that we were seeing false negatives. After the DSA, it was clear that MRVs were not adequate, at all.

What kind of venogram did you have?

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Lyon » Sun Feb 07, 2010 9:34 pm

.
Last edited by Lyon on Mon Nov 21, 2011 6:30 pm, edited 1 time in total.
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THANK YOU...

Postby leetz » Sun Feb 07, 2010 9:41 pm

i had an invasive venogram--cut in the groin dye the whole 9 yards...just looking for an answer...WHAT NOW???and thanks for the support everyone:) Bless!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Ruthless67 » Sun Feb 07, 2010 10:09 pm

leetz,

I'm disapointed right along with you. I don't know what else to suggest at this time except to wait the week or so for the BNAC Phase 1 CTEVD Study results to come out.
Seeing as your Dr. spoke with Dr. Dake already, maybe he could also get Dr. Dake to have your case looked at by the BNAC group. Might be worth a shot.

Lora
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Postby costumenastional » Mon Feb 08, 2010 12:32 am

Hang in there. After the BNAC results maybe we will find out about more veins or other similar problems that have been found.
Nonetheless i am sorry for your results. It is crucial for all of us to keep our feet on the ground while waiting to be tested.
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Postby happy_canuck » Mon Feb 08, 2010 1:29 am

My doctor's answer to the false negatives was "they just can't find the blockages YET."

Keep that in mind...and take care :-)
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Postby costumenastional » Mon Feb 08, 2010 1:46 am

I agree with the above. Of course it can be taken as an ms patient trying not to loose hope but on the other hand, ccsvi is brand new. Haacke is finding stenosis in the head, Buffalo may find all shorts of other vascular problems and so forth. They dont even propose venogram for whatever reason. Their future exams as described in the newsletter depend on 3 tesla mri machines and a new doppler machine. They dont even mention azygos imaging. How knows why? As this goes further they will be able to find vascular problems in each one of us.

Zamboni proposed the ijvs and azygos but lets hope that he might forgot something that others will eventually find ;)

Keep the faith Leetz.
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Postby Leonard » Mon Feb 08, 2010 1:58 am

You need to get an echo-Doppler done of flux and reflux.

I had the echo-Doppler done, then a venogram/phlebogram made. The echo-Doppler showed huge refluxes towards the jugulars, transmitted into the deep cerebral veins. However, at first sight the venogram showed a normal/quasi normal situation.

But a closer look definitely makes it possible to reconcile the two. My experience matches the experience of Sou. And it matches what I read on this forum about the experiences from patients in Poland.

The conclusions for me are: (a) it is not simple to make teh diagnosis of CCSVI, and; (b) the echo-Doppler (of course it needs to be carried out in the right way using the right equipment and protocol) is an extremely powerful instrument. I guess that is precisely why in the announcement of the new AMEDS Polish centre after the angioplasty procedure, there is a final check with the echo-Doppler.
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Postby costumenastional » Mon Feb 08, 2010 2:04 am

Thank you Leonard for your insights. If finding the stenosis was easy in all cases we would be very happy. It seems that it's not easy at all in some cases.
This is why Zamboni insists for the doppler to be done by an experienced ccsvi tech. And this is why we should expect ALL KINDS OF DIFFERENT APPROACHES AND PROTOCOLS in the near future.
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Postby Leonard » Mon Feb 08, 2010 2:29 am

At this point I think that it is very important that the appropriate echo-Doppler equipment is installed and can be used with the right protocol in hospitals around Europe, America and the world. Soon doctors will find out that every single MS patient shows the refluxes of the blood in the cerebro-spinal. This is what Zamboni found, this is where he found the 100% positive correlation.
Once we are at that point, doctors will soon realise that this is not a healthy situation with refluxes that must be caused by a poor drainage. Vascular doctors will immediately understand the picture (including of the iron storage which is quite normal in case of poor drainage from organs or limbs). And vascular doctors will also recognise that this is something that they can do something about and probably have done already for instance with diabetics patients.
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Postby costumenastional » Mon Feb 08, 2010 2:43 am

Again, i agree, and even though this forum should not be used as a place for chating, i need to share the following thought of mine:
Maybe Leetz is a victim of her "be proactive" attitude aka running from doc to doc trying to get checked for stenosis. This is exactly what i would do if i was given the chance, dont get me wrong. But still, like you and Sou said, it s not that simple after all.
Reminds me myself a year ago, when upon dx i immediately bombed myself with campath. Now i wonder if i did the right thing by changing mybloods chemistry once and for all.

I really think that vascular problems are the cause of MS.

I really think that everyone with no stenosis has no MS.

Leetz said that she is sure that she has MS cause of the spinal tap findings. Oligiclonal bands are present in other diseases too and it is well known that when they do not know what else could be wrong they tag it as MS, especially when demyelination is present.

I hope she has MS of course and i want to think that they will find a vascular problem soon enough.
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Postby LR1234 » Mon Feb 08, 2010 2:52 am

Hi Leetz,
A positive LP doesn't necessarily mean MS. Bacterial infections can also cause oligoclonal bands (as mentioned by Cos).

I am sure you do have MS and please don't think I am doubting your diagnosis but it is worth being tested for the differentials as well (just to double confirm)

B12
Lupus CNS
Gluten allergy (coeliac)
Sticky blood syndrome Aka Hughes Syndrome
Bacterial infections such as Lyme disease

I hope you get some anwsers soon x
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Postby robbie » Mon Feb 08, 2010 1:36 pm

had an invasive venogram--cut in the groin dye the whole 9 yards...

i thought the dye was administered in an IV through the arm for an MRV. i had it done that way when i was first diagnosed but that was for an angiogram.
Had ms for over 19 years now.
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hello everyone

Postby leetz » Wed Feb 10, 2010 1:36 am

everyone...thank you so much for your input...which is quite important to me...lot's of thing's to consider here...i am looking so forward to solving this issue...once and for all! yes, i did jump in and try to find out if i had ccsvi---i need to sAY that the doctor that did my venogram (cut through the groin and iv dye-forgot who asked that just wanted to clarify) is the head oF vascular radiology and works closely with another doc. whom went for training on how to test properly at stanford....i am unable to devulge his name at the moment as he asked me NOT to do so until he finds out more...

THANKS TO ALL OF YOU FOR YOUR SUPPORT--FOR ONLY WE WHO HAVE THIS DISEASE CAN TRUELY UNDERSTAND HOW ONE ANOTHER FEELS...GOD BLESS....ANY COMMENT'S LEFT ARE GREATLY APPRECIATED!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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