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


Postby CCSVIhusband » Mon Jun 28, 2010 3:52 pm

So, this is the former mshusband ... I guess by my new screen-name you can imagine the outcome of today's liberation on the wife.

A few thoughts, before I get into the nitty gritty ...

The lead-up to this procedure is the most stressful thing I could imagine. Questions abound;

Does she have CCSVI?
Is it going to be treatable?
What if she doesn't have CCSVI - is she that 5%?
Is THIS doctor going to be the best option?
Will he check all the right veins and know what to look for INSIDE those veins?
Will he stent?
What if he doesn't stent?
Should I mention CCSVI on here because who knows who's going out looking to get this doctor shut down.
We wouldn't even talk about it to ourselves the last few days until the procedure was done ...
... and a million others!

So ... we had the procedure (starting at 9AM this morning) in the US ... 100% covered by insurance (as I said before). The doctor has now done many procedures - I believe he's probably the 3rd most experienced doctor in the US now - and his name is not out there publicly (never has been and that's how it's going to stay) ... though he has said he wouldn't mind if it was because he "believes in CCSVI, and it's not a hard procedure". So I'm not putting his name out there either ...



More interestingly, we were one of the first many to contact Dr. Sclafani. We contacted him way back in February before his name was out there ... we were offered an early March appointment, but being newly MS diagnosed, the wife wanted a summer appointment for this because she gets summers off (psychologist for a school) ... but then Dr. Sclafani got shut down so we all know that happened.

WHO KNEW and we're REALLY LUCKY we didn't take that earlier appointment with him!!!

Turns out the wife had one of the worst cases of May-Thurner Syndrome the doctor who performed the procedure had ever seen. (See - Dr. Sclafani's visit to Italy paid off. We contacted the doctor last week about entering from the left leg for just that reason ... he was happy to oblige and it paid off - he said he would normally have gone from the right too if not for our request).

Also, the azygous had a "web" that basically shut all flow through there as well! Coupled with the May-Thurner that is the worst case scenario as the blood doesn't drain from the legs properly, and is forced into the azygous system ... but with the azygous system closed it has nowhere to go! So now both of those are flowing properly!

The jugulars were narrowed, but not clinically significant (and he said all flow was proper) ... so they weren't touched for now - though he said that in a few months for follow-up he'll re-check.

The good news? Since the wife was diagnosed with May-Thurner ... we now can follow-up with ANY vascular surgeon or IR anywhere ... because that is NOT CCSVI related (even though it is related in her case). So we did do some travel for our procedure - but now for follow-up will not have to because our hospital wasn't necessarily interested in CCSVI - but now we know of the other problem.

As for miracle on the table benefits ... we didn't see them. She was pretty zonked out (she asked for pain meds and muscle relaxers) - so she is kind of loopy. Her color was better as soon as I saw her - but that's all I've seen so far. Keep in mind we just got back to the hotel, and she is now asleep!

On a side note, the doctor checked MANY MANY veins (not just CCSVI veins) ... and the procedure took 4.5 hours. I'm very surprised that was the case. I though everyone else said 45 minutes. So 4.5 hours is crazy.

We only got balloons, but he said if there is re-stenosis at follow-up, stents are going in because they are safe in both the illiac and azygous. He even said they are in the left jugular, but is more cautious with that. (He did do a stenting procedure last week for the first time in the azygous - but has talked about them with all his patients).

He isn't a Zamboni-follower necessarily by any means, but knows our great Dr. Sclafani (actually used to work with him) and has been in contact with him regarding CCSVI throughout.

Am I missing anything?

Like I said, the wife's sleeping so I can't get a good feel for what's going on ... I think the 4.5 hour procedure caught both of us by surprise and neither of us slept particularly well last night.

The good news, obviously, is CCSVI was a major factor in her MS (along with May-Thurner).

The doctor said if both of those weren't caught as soon after diagnosis for her as they were ... it would have been bad because the flow was basically restricted on both ends ... and no-way around.

Thank goodness for Dr. Sclafani, Dr. Zamboni and their May-Thurner new information!

Any questions, please ask I know I'm forgetting a lot!

A few other things ... he also did some work in the hemi-azygous (we haven't heard anyone else having anything done in there yet - so a first there). AND did some work on the vertebrals ...

It's been such a whirlwind last 10 hours ... I know I'm missing a ton.
Last edited by CCSVIhusband on Mon Jun 28, 2010 7:37 pm, edited 3 times in total.
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Postby Trish317 » Mon Jun 28, 2010 4:00 pm

Great news, CCSVIhusband! Sending you and your wife prayers and good thoughts for her healing and health.
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Postby Cece » Mon Jun 28, 2010 4:37 pm

So if I don't turn out to have CCSVI, do I change my name to MisSy? :)

Now that is a feel-good story! Best wishes to you and your wife...and how fortuitous that they now know to look for MT syndrome.
"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 CCSVIhusband » Mon Jun 28, 2010 4:54 pm

She's awake now ... her hands and feet are warm too (and color is still better).

The thing we're going to have to remember in her case is if you looked at her, you wouldn't know she had MS. She walks normal, runs miles and miles every day ... can climb steps ... so I don't think the "video benefits" are going to be something we can see from her.

We're going to take the wait and see approach I mentioned before hand ... but I wanted to give that update.

The doctor made a lot of interesting quotes, that I want you all to read, because this is a medical professional saying them.

On my last thought for the night ... the doctor has found CCSVI in 100% of his patients.

And he openly talked about MS and CCSVI in combination ... to his nurses and the other doctors involved.

I will be updating more tomorrow morning, but then we leave for Montreal ... so we'll see ...

The wife just said, she's VERY GLAD she came and had this done ... (she's on the phone with family).

She said her chest and leg are sore (from ballooning ... wait til you hear the size/length of the balloon used).

The doctors and nurses also gave us some interesting quotes about these procedures today.
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Postby magoo » Mon Jun 28, 2010 5:06 pm

I am extremely happy for both of you!!! Thank goodness her blockages were caught early. Now hopefully she will never suffer with symptoms again!!!! Thank you for sharing this good news.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CCSVIhusband » Mon Jun 28, 2010 5:47 pm

OK ... I know I said I was done ... but one more because I just got back from getting chinese food and she seemed excited (we'd actually seen this symptom in a video that resolved after liberation - and she couldn't do this pre-procedure).

I walked in the hotel room and she said ... LOOK, I CAN POINT MY TOES.

So she did like she was on a balance beam and she pointed her toes (she used to be a gymnast ... so I have to believe her when she said she couldn't) ... and she COULDN'T just yesterday. Now 6 hours after liberation ... pointing of the toes ...


I think I'd mentioned this before, but her Neurologist (at her last appointment), we asked why her one leg is affected (turns out it was her left with May-Thurner) and why it was numb. He said "we don't know but most likely MS is limiting your blood flow to the leg ...".

I thought that was BS because MS can't limit bloodflow ... now I KNOW MS wasn't limiting the bloodflow ... May-Thurner and a blocked azygous were ...

SERIOUSLY ... this is crazy 5 hours later. I NEVER expected to see real results the same day.
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Postby MaggieMae » Mon Jun 28, 2010 5:56 pm

I've been checking several times today hoping to hear that all went well for your wife. I'm so so happy for you both and happy that this was caught early. Wonderful.
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Postby NotFound » Mon Jun 28, 2010 6:49 pm

So very happy for you guys! May your wife continue discovering the improvements.

4.5 hours, wow. That is some thorough doctor!

Also makes me wonder if I should have persisted and went with Dr. Simka (who no also enters on the left) even AFTER the "no CCSVI" verdict from Dr. Kostecki.
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Postby ozarkcanoer » Mon Jun 28, 2010 7:11 pm

I love your new name !! Every time my brain starts wondering if CCSVI and MS is just a big empty balloon then some new story like yours pops up and I am back on track. I hope it won't be too long before I can get treatment in my home town. I am looking forward to your updates so keep us posted !

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Postby elyse_peace » Mon Jun 28, 2010 7:19 pm

Congratulations to both of you.
So very well done.
ccsviwife - congratulations on your new future. :D
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Postby Drury » Mon Jun 28, 2010 8:06 pm

OVER 4 HOURS!!! Double WOW!!!

So excited to read your updates and like you said "God Bless Dr. S"

Thank you Kate for giving us hope
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Postby blossom » Mon Jun 28, 2010 8:16 pm

so happy to hear the good news about the treatment and that your wife is doing so great. so, rest well, we all are excited for the both of you and waiting to hear more.
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Postby bestadmom » Mon Jun 28, 2010 8:19 pm

I love, love, love your wife's story. So many people w/ms have invisible "symptoms". It's better to fix what's broken before the symptoms become permanent damage.

Your wife is going to handspring and cartwheel thru Montreal. Enjoy your vacation.
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Postby CCSVIhusband » Mon Jun 28, 2010 9:25 pm

It's really crazy to think that without so many of you on here, we'd never have had this happen.

Her neurologist would have NEVER pointed us to a vascular person for her condition (May-Thurner Syndrome and the azygous issue).

So who wants more updates?

As if enough hasn't happened, there's more. Her leg pain? Gone ... 8 hours after the procedure, pain in the legs is gone! (we're going to test balance, urination urgency/frequency tomorrow, and some other things once the pain from the incision goes away). Like I said, I can understand placebo for how something "feels" to some extent, but not actual physical things someone couldn't do yesterday that they can today.

She actually posted for the first time on this site just last week under a screen name she made up (she doesn't know I noticed, but I did). She said twice in the past year she's had days where she had no symptoms ... TWO days in 1 year.

My guess is tomorrow will make #3 ... (coincidence or liberation? - I think liberation ... especially if it continues for days after that).

So for all of you out there, I'm a real person, I'll gladly give you my name and what I do for a living if you really want. I'm not someone who made up 5 screen names and keeps telling the same liberation "tale" ... but I think most of you already know that.

This is as real as it gets. I'm a pretty smart rational highly educated man ... and I can't believe what I've seen in the last 24 hours ...

I'll admit, I used to get down when I read certain posters on this site knocking CCSVI (and other sites too) ... I questioned CCSVI, I questioned if she'd have CCSVI, I questioned a whole bunch of things ... I might have spoke like I really believed, but I'll bet if you hypnotized me and asked, I'd have answered I was very skeptical. Well ... silly me ...
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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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