NDwannabe is IN Poland!

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

Postby hopeful2 » Sun May 30, 2010 8:45 am

How are you? Hope things went smooothly:)
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Postby ndwannabe » Sun May 30, 2010 9:01 am

Back from the hospital.

CCSVI not found. Will go home and re-test for Lyme.

********************************************************
Before I go on describing the experience of others I want to mention a few things that were not clear to me after reading everybody's experience (or maybe I just skipped over it looking for IMPROVEMENTS):

    The procedure IS invasive. You feel the catheter going in, the dye being injected, the balloon being inflated

    According to some - ballooning hurts and stenting hurts some more

    You are sore after the procedure. Men in our group either don't complain much or are simply not as sensitive. Women - whether having had the liberation or simply venography are VERY and uncomfortably sore

    Being stuck in bed for approximately 18 hours - no leg bending, no moving side-to-side, bedpan and all is VERY testing and somewhat humiliating. You are made to drink approximately 5 glasses of water after the procedure.

    I feel worse than ever after the procedure (I know this is temporary) - veins might have been scratched, valves disturbed, the dye is toxic, etc.,


********************************************************
Others:

* We did not have anybody with immediate stark improvements. Slight immediate - yes.

--- One more lady in our group did not have CCSVI. She was never given a proper MS diagnosis (no brain / spinal MRI, the spinal tap result was lost by the lab). She is in a wheelchair and has common MS symptoms - foot drop, leg drag, fatigue, balance problems and the "usual" bodily functions problems

--- One gentlemen with SPMS had a rather significant stenosis in his left jugular - was ballooned. He is trying to shake off the after-procedure soreness to see the improvements. His major symptoms were tremors, lack of balance, lack of coordination and brain fog.
He feels slightly better on all accounts

--- Another gentlemen (I think he has RRMS) also had a ballooning only. He saw immediate improvement in his blood pressure. His major symptoms were mental fatigue and yes, the higher than normal blood pressure.

--- Finaly, one lady in our group (PPMS) received the ballooning in one of the jugulars and stent in another. The stenosis on the side of the stent was said to be very long and did not hold after the several attempts of the ballooning. She saw blood pressure improvements (from too high to more close to normal) AND for the first time in her life she felt a little sweat on her neck . Her symptoms are also foot drop, leg drag, fatigue, balance problems and the "usual" bodily functions problems.

***********************************************************

I am still glad I did it (even though very disappointed) - I ruled out something that would have been a "what if?" for the rest of my life.
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Postby LR1234 » Sun May 30, 2010 11:15 am

NDW, You are helping with our understanding of MS and CCSVI.
So thank-you for allowing yourself to have the venogram.

I am not suggesting you don't have MS as we still don't know what "MS" is but I recently read about a lady who for 12 years thought she had PPMS and actually had Hereditary Spastic Paraplegia

I am sure there are many conditions that mimic MS.
Hughes syndrome
Lyme
B12 deficiency etc
Adem??
Also I know a lady who had a small tumour/growth on her spine who was diagnosed with MS for 20 years, they found it and removed it "MS" gone!
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Postby drbart » Sun May 30, 2010 11:40 am

ndwannabe wrote:Back from the hospital.

CCSVI not found. Will go home and re-test for Lyme.

--- One more lady in our group did not have CCSVI. She was never given a proper MS diagnosis (no brain / spinal MRI, the spinal tap result was lost by the lab).


bummer! OTOH (and i'm assuming you haven't had a brain MRI) you may not have MS or the lesions either!

if it turns out that you do have lyme, is there a path out from that?
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Postby Rose2 » Sun May 30, 2010 2:54 pm

NdWb;
I am sorry to hear you feel deflated. (no pun on the angio ballon). Maybe this is just Round One. A big Round, but a Round of ruling out important issues for sure. Hope you have a good trip home. REST.

Dr. Bart, Lyme; A best friend became ill when I became ill with MS 2001. She took a different course, and has FINALLY tested Positive for Lyme Disease. It is a very difficulty disease to get a True Positive for.
We compare symptoms and they are identical.
Her path out is with a Lyme Specialist in Seattle, where she lives. Complex meds and diet (Gluten Free) and she is feeling alot better. Her biggest hurdle was finding the Lyme MD to believe in her symptoms and continue trying to find a diagnosis. a most elusive disease.
Just my 2 cents. Joanne
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Postby hopeful2 » Sun May 30, 2010 4:02 pm

NDW: Sorry to hear it wasn't a definite case of CCSVI. It sounds like you'll be doing some testing for Lyme's Disease:( I hope you have a good flight home---I think you said your Frankfurt layover is much shorter for your trip home! Hang in there.
Patrice
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Postby Billmeik » Sun May 30, 2010 5:41 pm

so ndwanabe have you ever had a brain mri or spinal tap to test if you have ms?
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NDwannabe in poland

Postby simone » Sun May 30, 2010 6:21 pm

ND,
Good of you to check it out instead of wondering for who knows how long.
I hope that the discomfort you have experienced rapidly disappears and that the rest of your trip is easy and you feel much better.
Thank you for sharing your experience and all your observations. much food for thought....
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Postby 1_sindy » Sun May 30, 2010 8:58 pm

ndwannabe
im sorry to hear that you did not have ccsvi,and i do understand how you must feel right now.At least now you can have the retesting for lyme and be treated if that is what you have i wish you a safe trip home and please keep us posted to how you are doing.
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Postby drbart » Sun May 30, 2010 9:13 pm

1_sindy wrote:im sorry to hear that you did not have ccsv


shouldn't we amend this with "so far as anyone can tell"?

we may not be able to image/measure things in smaller veins, and i'd be surprised if venous malformations are confined to big areas we can do something about today.

recall the old saw about looking for your car keys in a dark street .. under the only lamp post around.

if NDWB turns out to *not* have lyme, she may be one of the more interesting MS/CCSVI cases. neither she nor medicine should give up and just say she doesn't have it.
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Postby ndwannabe » Sun May 30, 2010 10:34 pm

To make it clear:

It was another lady in our groups who did not have brain/spine MRI dome(and CCSVI was not found)

I had several MRI's - brain without the dye, spinal without the dye, brain+spinal with dye. I have numerous lesions on my brain, Dawsons fingers, and at least one (as of three years ago) big lesion around my tail bone.

Thank you for kind words everyone.
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Postby LR1234 » Mon May 31, 2010 3:13 am

Maybe look into CTOS/CTNVS
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Postby Algis » Mon May 31, 2010 3:42 am

FYI:

Cerebellar thoracic outlet syndrome (CTOS) and cerebral thoracic neurovascular syndrome (CTNVS)
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Postby Billmeik » Mon May 31, 2010 6:58 am

hmm so you have ms for sure... did they look at you azygous?
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Postby Billmeik » Mon May 31, 2010 6:59 am

hmm so you have ms for sure... did they look at you azygous?
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