LIBERATION TODAY

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

Postby pklittle » Thu Jul 01, 2010 7:36 am

CCSVIHusband,
THANK YOU for sharing your doctor's feedback and thoughts on all of this. He sounds like a brilliant doctor with an open mind. I am happy your wife had her problem areas treated.
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Postby Cece » Thu Jul 01, 2010 8:15 am

Thanks for the great detailed update. I would think MT is associated with more aggressive disease mainly if one also has an azygous blockage? I could see a scenario with MT and jugular stenosis where the MT is able to reroute and not cause as much problem. Even in RR there is more aggressive and less aggressive RR...and I do agree with the idea of throwing out the old labels and bringing in the time/veins equation. It is still useful to use the rr and pp descriptors as clinical descriptions but not as if it is the disease itself, because ccsvi is the disease and rr/pp the way the symptoms manifest, as determined by the equation there...I think it holds up! And lifestyle/health choices such as diet and smoking could be in the equation as well. I looked for where I'd read that Zamboni had suggested a connection between progressive and MT and could only find it on a blog with nothing to support it, so that may indeed be less a fact and more a blurred memory.
"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 newlywed4ever » Thu Jul 01, 2010 6:04 pm

Thank you, CCSVIhusband! Sharing your knowledge/experience is most beneficial.
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Postby Rose2 » Thu Jul 01, 2010 6:31 pm

HAPPY!! HAPPY!! HAPPY!! HAPPY!! HAPPY!! HAPPY!! HAPPY!! HAPPY!! Oh, sooooo happy for your new lives! Hooray! Blessing to your great MD and I hope he comes out of the closet soon and lets us thank him and stand in line! Congrats! Rose ;)
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Postby CCSVIhusband » Wed Jul 07, 2010 9:43 am

Alright, in an effort to be fair and balanced, an update in regards to CCSVI liberation ...

10 days later ...

Things are still happening daily as after effects to liberation.

1. She can now shave her legs in the shower without the fear of falling through the glass shower doors if she doesn't hold on to something or sit on the built in shower seats (I guess you could call them).

2. She can get dressed in the middle of the room without leaning on the bed or wall for support and put her bottom half dressings on.

3. She ran on a treadmill for the first time in almost a year yesterday - remember she runs outside a lot, but rarely on a treadmill for fear of losing her balance and stepping off the (whatever the thing in the middle of the treadmill that rotates is called) and falling over.

4. She sleeps completely through the night (almost to the point of being dead to the world). I was working on my thesis last night and she didn't even budge when I came in ... usually that would have prompted a bathroom visit.
4a. On that note, the bathroom visits are down SIGNIFICANTLY
4b. She didn't even know about these really (or maybe she did), but right after falling asleep she used to have night spasms, in her shoulder and legs ... those are gone completely.

and for the fair and balanced part:

We do feel her iliac vein has re-stenosed. Reasons: Her l'hermittes is only back on the left side of her LOW back - though it remains gone everywhere else (used to travel all the way down the back) ... (which if you believe that by occluding the iliac vein it forces leg blood to flow up through other sources draining into the lumbar veins and through the azygous system it makes sense). Other reasons we believe this is her left leg/foot color have returned (he is also going to check for a DVT as the potential cause of this) ... and she had SIGNIFICANT improvements in her left leg for a few days post procedure that have returned. Also the left is significantly colder than the right ...

Her right leg MS symptoms are ALL gone.

Her left leg MS AND May-Thurner symptoms are BETTER (thanks to opening the azygous) but the May-Thurner symptoms (leg pain/numbness) are not even as good as a few days after the procedure. Hence, belief ourselves and our doctor that stents are needed in the iliac.

Um, what else? Her heat sensitivity is slightly better (who can be sure under the oppressive heat on the eastern part of the US - but her ability to take HOT showers is back *and believe me I don't know how she stands the heat in there - I witnessed that pre-MS diagnosis when we were dating*).

I don't think I'm missing anything at this point that I've noticed or she has brought up ...

WE STILL CONSIDER IT A BLESSING TO HAVE THIS DONE IN THE US and NOT TRAVEL ABROAD. ESPECIALLY SINCE WE'RE GOING BACK IN FOR THE ILIAC/MAY-THURNER ISSUE. Especially since we didn't pay a dime out of pocket because it was all insurance covered and in-network (whatever that 'really' means).

Again, I can hypothesize (since the doctor said the same thing) ... a blocked azygous IN ADDITION to May-Thurner is bad news. The blood can get into the spinal area, but can't get back out easy ... luckily my wife is young and new to MS as this was caught. We're grateful to all who helped find this wonderful doctor, and perhaps we'll all meet soon!

Wishing you all continued improvements as well ... and to those going to him in the future, you're in great hands.

EDIT ... I forgot one ... and this is one I found odd (asked a few doctors about it privately BEFORE THE PROCEDURE - including Dr. Sclafani - and their answer was uncertain) and maybe other women can think about.
For A LONG TIME (almost since the time of her diagnosis) she hasn't gotten her period. I know the gonadal veins can drain through the azygous system ... but within 10 days of getting this procedure done, there's the monthly visitor. This MAY be a coincidence ... but often times there are no coincidences in life ...
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Postby Rieja » Wed Jul 07, 2010 10:42 am

Awesome report!

You guys should go to Kennywood... then you will REALLY see if the heat intolerance is better/gone :P
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Postby CCSVIhusband » Mon Jan 03, 2011 4:17 pm

I'll have an update tomorrow night ...

this is just a teaser.

(met a few other posters today) ... good luck to you on your CCSVI journey
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:))

Postby leetz » Mon Jan 03, 2011 5:37 pm

i too have had the CCSVI procedure done 20th of December...i am seeing results already but the foot dis-coloration and coldness is still there...they entered into the right femoral vien...was wondering IF the left should have been considered???? and my symptoms are mostly left sided-was thinking does that relate to iliac vien (know it's location but sometimes left sided symptoms mean there is a right sided problem)...like i previously stated i have had good improvements (no longer a wall-walker) but left side is severely weaker than right.... also i can jump just a lil-bit but i can:)) so wondering what should have/could have been done a lil differently for better results??? thoughts anyone?

Oh and praise be to the good Lord for doing his work through your good Doctor!!!!!!
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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