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

Postby Drury » Mon Jun 28, 2010 9:38 pm

We LOVE the updates.

I am ready for bed now though with a happy heart.

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Postby BooBear » Tue Jun 29, 2010 2:37 am

How wonderful for both of you!!!! I am so happy you were able to discover the MT and resolve the issues- it sounds like you guys are doing great!
Three veins angioplastied.  One renewed life.  
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Postby SaintLouis » Tue Jun 29, 2010 7:00 am

Wonderful news!!!!

I pray the improvements just keep on and on!

Quick question: is your wife taking any blood thinners after her angioplasties?
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Postby MS_mama » Tue Jun 29, 2010 8:27 am

So happy for the both of you. I'm curious, if you don't mind sharing, whist your wife's MS history is like. You did mention that she was was in pretty good shape. I am in that boat in that I'm relatively well (can't run or walk miles or anything though, but still...). So for now I'm waiting as I'm afraid to mess with myself at this point.

Also as far I as I understood, may thurner can be treated with angioplasty only then?
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby jr5646 » Tue Jun 29, 2010 9:06 am

I almost overlooked your post... the new name works!!! Thanks for the great update !! Continued improvement to your wife - Great news.....

Wow - 4.5 hrs.. Mine only took about 1.5. Nothing in the Azgyous or Iliac.. just the left IJ (ballooned in three places), but I'm wondering now if things were overlooked as I'm not feeling much :? It's only been a week so I need to be patient, however I' like to find someone closer than 7hr drive for follow-ups anyway.

Please PM me your Dr.s name (if he/she is ok with that) and maybe I can get a 2nd opinion... and potentially additional treatment as I fit May-Thurner symptoms too..

Congrats to both.. I now how much effort went in to getting treatment for your wife and that is commendable, for sure.
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Postby Cece » Tue Jun 29, 2010 9:16 am

MS_mama wrote:Also as far I as I understood, may thurner can be treated with angioplasty only then?

Yes, but it's a much more understood disorder and I believe there is not much concern about using stents in May Thurner. It is not in the neck where torsion forces might eventually weaken the stent, it is not in a place where if it comes loose there is a direct line to the heart. Personally I'd get a stent for May Thurner, no problem, and I'll be requesting conservative care with angio and no stents for any jugular issues.
"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 sofia » Tue Jun 29, 2010 11:20 am

way to go!
i'm really happy for you. there is no doubt in my mind that ccsvi works. no doubt at all!
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby HappyPoet » Tue Jun 29, 2010 11:24 am

My husband and I are SOOOOOO HAPPY for your wife and you!

Love your new name! Your thread slipped through my consciousness several times before it registered that CCSVIhusband must be mshusband (in a prior lifetime).

We hope you enjoy your new lives together :D

Best wishes,
Bronic & Pam
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Postby L » Tue Jun 29, 2010 11:26 am

MS_mama wrote:So for now I'm waiting as I'm afraid to mess with myself at this point.

It seems that now is when you can expect the most benefit from the procedure. I think, at an early stage, it seems like you have a chance to say goodbye to MS for ever.
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Postby zinamaria » Tue Jun 29, 2010 1:40 pm

THIS IS GREAT NEWS!!!!!!!!!!!!!
Yes, please keep posting, it's necessary, plus I am on the edge of my seat and now I am going to get tested for May Thurner..this doctor is an incredible man, you are so very blessed to have found him.

More, encouraging for those of us waiting.
Thank you, and a huge embrace for your wife, and you too, for being so super.

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Postby pklittle » Tue Jun 29, 2010 3:03 pm

Hi - I'm glad the procedure went so great for your wife! But so we can all understand better, please explain her MS symptoms before this treatment. You mentioned leg pain and that she could run miles though.
If you've defined her case in the tracking thread or anywhere else can you provide a link?
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Postby CCSVIhusband » Wed Jun 30, 2010 8:33 am

Her symptoms BEFORE liberation were:

1. Vertigo (came and went)
2. Dizziness (came and went)
3. L'hermittes (first symptom - has been around for 3 years)
4. Both foot numbness (what caused us to go see doctor initially) - had spread up legs at one point but then back down to ankles/feet more recently
5. Leg pain (feeling of tightness/squeezing in calves - always around)
6. Left leg feeling of dragging/weakness
7. Optic Neuritis (never bad - has resolved for the most part)
8. Balance issues
9. Fatigue (MS fatigue)

AFTER liberation:

1. Vertigo is GONE
2. Dizziness is GONE
3. L'hermittes is GONE
4. Both foot numbness is still there (but resolved to the point it's like the first few weeks she had it she says)
5. Leg pain is getting better by the day she says
6. Left leg feeling of dragging/weakness is getting better - this was her May-Thurner leg which she's supposedly had since birth (congenital) so doctor said this should take time but May-Thurner resolves in time
7. Optic Neuritis - like I said, was never "bad" so no change there
8. Balance issues, she can go up/down stairs without holding on now.
9. Fatigue is a lot better, she said she doesn't feel crushed by the MS blanket anymore.

We went out and walked around Montreal about 4 miles yesterday, she did well ... she didn't feel "fatigued" afterwards and she has been sleeping at night much better ... her urinary frequency is way down and urgency too ...

I've noticed some other changes, but I'm waiting for her to confirm them.
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Postby HappyPoet » Wed Jun 30, 2010 9:14 am

A happy report!

Bronic and I pray her improvements will last. Thank you for sharing and giving us much hope. Your post is great... clear, concise, complete.

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Wonderful News!

Postby nicknewf » Wed Jun 30, 2010 11:47 am

Congrats to your wife. (Looking forward to Sept. 27 in our house).

I love the name change!
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Postby bossman » Wed Jun 30, 2010 12:20 pm

Congratulations!!!!!! I am so happy for you!!! I know you are busy but can you PM me when you get a chance.Thanks!!

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