Spinal Lesions Headaches and CCSVI

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

Spinal Lesions Headaches and CCSVI

Postby orion98665 » Sun Aug 01, 2010 9:24 pm

OK, just have two questions. Just got wife's MRI on spinal cord. The MRI shows 2 lesions with 1 showing active demyelination. Just asking if anybody
knows how this relates or possibly could relate to CCSVI..? Last, wife always
wakes up in the morning with a slight headache. Do other MSer's have this
symptom..? If so, is this a symptom of possibly having CCSVI..??? Any info
would be helpful.


Thanks,

Bob
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Postby costumenastional » Mon Aug 02, 2010 1:55 am

Bob, let me tell you, it sounds very familiar friend.
First of all, i had 2 lesions in my cervical spinal cord (C2 and C4-5) and no visible by MRI brain or thoracic lesions. They were not active upon dx though.
I was diagnosed because of a very nasty optic neuritis which damaged my left eye's optic nerve for good.
After Campath the smaller lesion "vanished" without any positive effects symptom wise.

And now to your question:
Apart from motor symptoms, numbness, optic neuritis blah blah YES! There were significant brain issues, brain fog a very debilitating "poisoned brain syndrome" etc all of which slowly subsided after they ballooned both my jugs and azy 3 months ago.

In fact, brain issues were the only issues that improved post op in my case.
So i suggest for your wife to check out her veins asap.
It is a possibility her lesions have been caused by stenoses in her veins along with that slight headache.

Good luck.
Last edited by costumenastional on Mon Aug 02, 2010 2:48 am, edited 1 time in total.
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Postby sbr487 » Mon Aug 02, 2010 2:18 am

costumenastional wrote:First of all, i had 2 lesions in my cervical spinal cord (C2 and C4-5) and no visible by MRI brain or thoracic lesions.


Costume, you had stenosis in Azy as well as IJV but lesions only in brain?
If yes, how severe?

Very curious ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby costumenastional » Mon Aug 02, 2010 2:45 am

I had - have only cervical spinal lesions. No brain lesions (at least not detectable by 1.5 Teslas).
Actually, i got my last MRIs results last Friday. Since August 2009 nothing has changed. Only one lesion was found in my cervical spine.

I am positive that there is brain damage of course even while neuros sing their song which goes like : " no brain lesions, no brain damage". Right...
This is why i think our friend's wife should be checked for CCSVI.
She may well be found with mangled veins like i was.

Yes, both my jugulars had to be ballooned along with my azygous which was significantly stenosed.
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Postby sbr487 » Mon Aug 02, 2010 3:05 am

costumenastional wrote:Yes, both my jugulars had to be ballooned along with my azygous which was significantly stenosed.


That's another reason why the current method of using lesions as the marker of MS disease activity could be incorrect. Lesion are probably the last symptoms to show up while the damage is going on all along ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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Postby orion98665 » Mon Aug 02, 2010 8:09 am

Thanks Costumenastional, your dx sounds so similar to wife's. She was
dx with MS after having optical neuritis. MRI on brain revealed 15 to 20
lesions. And the part that scares me is MRI revealed scarring (optic
neuritis) on both optic nerves. As stated in original post 2 lesions
were found on spinal cord. As I review here copy of MRI the exact wording of final report is.

IMPRESSION:
1. Signal abnormalities within the left half of the pons and left half of
spinal cord at levels C5/6 and T1/2 consists with patients history of
multiple sclerosis. There is subtle enhancement of the spinal cord lesions
centered at the level of C5/6 suggesting active demyelination.
2. Mild degenerative changes mid cervical spine.

This report is a little too technical for me to understand but it appears
that 2 lesions were discovered.

Costumenastional I'm glad to here your doing better after post
liberation treatment. Can I ask what level of MS were you dx with
prior to liberation treatment (RRMS, PPMS, SPMS)..??
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Postby costumenastional » Mon Aug 02, 2010 10:20 pm

I dont really know what type of MS i suffer from. In fact i really doubt that most of us do. Let's say RRMS since my optic neuritis was accompanied by a nasty relapse. PPMS has no relapses. Or so they say...
I personally happen to believe that there is no remission in multiple sclerosis whatsoever and that neurologists are only good for inventing names and categories for stuff they don't have a clue about. But that's a whole different issue.

I d hate to raise false hope for you and your wife at this point. Please, whatever you do, have in mind that it is too early to come into solid conclusions regarding who the "liberation" procedure can help and to what extend. There are many contradictive testimonies. Not to mention that most of us "liberated" patients had the treatment only a few months ago.

It seems like your wife's condition needs attention as we speak. I trust that your neuro is planning to fight the ongoing inflammation somehow asap.

Now, IF your wife's veins are to be found stenosed it is only natural for her to undergo an angioplasty. Avoid stents if possible and see what happens.
If you ask me i would say that you got to do it simply cause there is no other option. The sooner the better.
On the other hand, i strongly suggest that both you and your wife should read as much as you can about CCSVI and make a decision on your own.

Good luck friend.
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Postby TMrox » Tue Aug 03, 2010 2:55 am

Orion,

I only have one lesion in my spinal cord, no further attacks, no brain lesions, no o-bands, normal evoked (visual) potentials. So my docs have labelled me as "Transverse Myelitis".

Among many other symptoms, I did suffer from intense migraines on the left side of my head, especially when lying down. I had azygous 100% blocked and left internal jugular stenosed more than 90%.

My husband has kindly shared his experience in my facebook of how he assessed the risks of the test and treatment I wanted to have for CCSVI.
See:

http://tinyurl.com/3a8b8x2

There you can see how I have evolved after the angioplasty 18 weeks afterwards.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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