Cece's turn

[EJC]

EJC, having read your updates on Emma, she was on my mind yesterday when I was noticing that my vision felt overcorrected and I was seeing better than usual (although still pretty badly) with my contacts out. What an amazing thing we are all going through. If I can ask, what degree of blockages was Emma treated for?

We weren't given specifics as percentages.

In my excitement and anticipation of the event one of the questions I forgot to ask at the time was "how blocked were they on a percentage basis?" which would be terribly useful knoweldge now.

However, I did ask what physical size the prblems were and was provided with the following:-

Emma's left jugular was normal size (which I understand to be around 12mm or so) and the valve was restricting flow substantially down to possibly 3-4mm so as much as 70% or so.

Her right Jugular was almost entirely malformed at no more than 6mm diameter. The valve was creating a restriction down to around 2mm so really very little flow at all.

It was the right Jug that Dr Reid was worried about overtreating especially as it was the first he'd come across where the entire vein was narrow (congenitally they assumed) so he opened this as far as he dared without risking causing any damage.

I have a funny feeling we'll be addressing this particular Vein again at some point in the future.

I wonder if Dr Sclafani and Dr Reid have communicated on CCSVI? Having met Dr Reid and read Dr Sclafani's posts I think they would have a wealth of information to share.

[EJC]

Emma's eyesight improved to almost the same degree.

Her optician also said he'd seen nothing like this in his 30 years of practice.

Is it that uncommon?

It is so exciting to hear of other's improvements. Emma has all my best wishes, hopefully the depression will continue to lift, if life is getting easier instead of harder.

I should probably define that a little more.

It's the prescription change that had him puzzled, some of the other improvements were not such a great surprise but having an eyesight prescription change as a result of a vascular procedure was a real eye opener for him (forgive the pun).

[hh]

cece,

a fantastic start to blood flowing and ur recovery. continue improving and seeing more amazing changes. so happy you were in Dr S's good hands. your show bravery, courage and strength. sharing the great happiness... xoxo

[Cece]

Emma's left jugular was normal size (which I understand to be around 12mm or so) and the valve was restricting flow substantially down to possibly 3-4mm so as much as 70% or so.

When going in for CCSVI treatment, this is the presentation to hope for: nice large healthy veins with one obstruction down low, so that when the obstruction is cleared, the vein is large all the way down.

Her right Jugular was almost entirely malformed at no more than 6mm diameter. The valve was creating a restriction down to around 2mm so really very little flow at all.

This would be a hypoplastic vein with a hypoplastic valve, I think.

It was the right Jug that Dr Reid was worried about overtreating especially as it was the first he'd come across where the entire vein was narrow (congenitally they assumed) so he opened this as far as he dared without risking causing any damage.

I have a funny feeling we'll be addressing this particular Vein again at some point in the future.

Did the valve make a 'pop'?

If indeed it is hypoplastic, with Dr. Sclafani investigating the idea of progressive maturation by repeated venoplasties increasing the size each time, we'll find out sooner or later if that works.

There is so much hope and potential with the discovery of CCSVI. I love reading of Emma's improvements and I hope only for more and more with the passage of time and perhaps future procedures

I wonder if Dr Sclafani and Dr Reid have communicated on CCSVI? Having met Dr Reid and read Dr Sclafani's posts I think they would have a wealth of information to share.

The ISNVD meeting next month is going to be fabulous, will Dr. Reid be there?

Isn't it something, how when this began it was people here in the forum discussing CCSVI and Dr. Zamboni and a few other European investigators researching CCSVI and now it has exploded into so many of us and so many of them (doctors and researchers).

[Cece]

cece,

a fantastic start to blood flowing and ur recovery. continue improving and seeing more amazing changes. so happy you were in Dr S's good hands. your show bravery, courage and strength. sharing the great happiness... xoxo

Thank you, hh, it has been fantastic so far. I am always hedging my bets, I've heard stories of people with improvements that fade after a few weeks, so I am taking none of this for granted. Thank you for sharing in the happiness. I hope that this procedure, with whatever results are possible for each person, will be available for everyone who wants it.

Other than the one day at MoMA, which was the second day post-procedure, I have not had that sudden hard fatigue that is scary and feels like collapsing. This is the longest stretch that I have gone without that in a very long time. As a precursor to collapse, I get what I think of as the 'slow blink,' which is when I realize I'm not doing well and am slower and need to stop and lie down and not push it because full-blown collapse may be on the horizon. I noticed yesterday that I have not been having that slow-blink feeling.

I am having more fun with what I am doing. I am almost always comfortable or not uncomfortable. This is odd, I have been in pain for so long, it is just background that I ignore.

I still struggle with too much noise or too much going on, such as when my kids are acting up. I am still worn out at the end of the day, but not worn out, twisted and ground up.

Food still tastes really good. Colors are bright and occasionally shocking. Dreams are vivid. I have these black boots with a zipper, every time I put them on while standing up, I am showing off even if there is no one there but me to be aware of it.

I cannot wait to get back to exercising. In November and December, I was on a good stretch, I was working out every other day both aerobic and strength-training. In January I dropped the aerobic, I wasn't feeling up to it, but the strength-training is always good and makes me feel better. Since the procedure I haven't worked out, except to the extent that raising kids is a workout, but I feel like I'll be able to do more.

Less cogfog means more confidence. Less fatigue means more confidence, again, that I can schedule something and will be able to follow through on it and, depending on what's scheduled, even enjoy myself when I'm there.

Oh, this is odd! Yesterday, I was resting in the evening, I had done a lot during the day and it had gone well. I am usually cold, so I had my fleece jacket on, two pairs of socks, and was under two comforters. And I began to sweat!! You might think, of course, you had a coat on and were under two comforters. But I cannot remember sweating in those circumstances.

With RR MS, I've had upswings before. When I'm on an upswing, I try to get everything done before the upswing vanishes. It reminds me of the army, with the idea being that MS breaks you down so you can build yourself up again, only with MS, you then get broken down again, built up again, broken down again, built up again...it's a lot of work to do the building up and a lot of pain to be being broken down. I have hopes that this upswing will continue, that it will be a long stretch of building up without the being broken down, it feels really good to imagine this being so.

[prairiegirl]

There is so much hope and potential with the discovery of CCSVI.

Isn't it something, how when this began it was people here in the forum discussing CCSVI and Dr. Zamboni and a few other European investigators researching CCSVI and now it has exploded into so many of us and so many of them (doctors and researchers).

It really is amazing what has happened in the past year. What's in store for 2011? I agree that there is so much hope and potential-- bring it on! So happy to hear of your improvements, Cece !

[Cece]

It really is amazing what has happened in the past year. What's in store for 2011? I agree that there is so much hope and potential-- bring it on! So happy to hear of your improvements, Cece !

I am looking forward to word getting out in the US about CCSVI. I am looking forward to Dr. Zamboni getting recognized with a Nobel prize, once this all gets sorted. I am looking forward to our investigators, Dr. Sclafani and Dr. Dake and Dr. Siskin and Dr. Haskel and all of them, publishing their results on CCSVI so that more of this conversation can exist in the medical literature. I am looking forward to the Canadian government deciding that there is enough evidence, whenever that point may be, and making CCSVI treatment available in Canada under OHIP. Ok, a lot of this won't be in 2011, but it's all coming.

Thanks, prairiegirl!

[CenterOfGravity]

It really is amazing what has happened in the past year. What's in store for 2011? I agree that there is so much hope and potential-- bring it on! So happy to hear of your improvements, Cece !

I am looking forward to word getting out in the US about CCSVI. I am looking forward to Dr. Zamboni getting recognized with a Nobel prize, once this all gets sorted. I am looking forward to our investigators, Dr. Sclafani and Dr. Dake and Dr. Siskin and Dr. Haskel and all of them, publishing their results on CCSVI so that more of this conversation can exist in the medical literature. I am looking forward to the Canadian government deciding that there is enough evidence, whenever that point may be, and making CCSVI treatment available in Canada under OHIP. Ok, a lot of this won't be in 2011, but it's all coming.

A big DITTO to that, Cece!!!!

[Donnchadh]

Cece,

Any update on your symptoms? How are you feeling post-op?

Donnchadh

[Cece]

Cece,

Any update on your symptoms? How are you feeling post-op?

Donnchadh

Really good, Donnchadh. Not perfect. I still have MS. But it's a different version of MS than I had a week and a half ago. This one is ten times more livable.

A few hours ago, I posted all this:
www.thisisms.com/ftopicp-155062.html#155062
But I didn't mention better clarity of thinking or that I keep thinking that it's hours later than it really is because I'm able to do more now. Or that my friends have been bringing me food, despite the fact that I feel much better than I did before the procedure, even though I am still recovering.

[bluesky63]

[erinc14]

It really is amazing what has happened in the past year. What's in store for 2011? I agree that there is so much hope and potential-- bring it on! So happy to hear of your improvements, Cece !

I am looking forward to word getting out in the US about CCSVI. I am looking forward to Dr. Zamboni getting recognized with a Nobel prize, once this all gets sorted. I am looking forward to our investigators, Dr. Sclafani and Dr. Dake and Dr. Siskin and Dr. Haskel and all of them, publishing their results on CCSVI so that more of this conversation can exist in the medical literature. I am looking forward to the Canadian government deciding that there is enough evidence, whenever that point may be, and making CCSVI treatment available in Canada under OHIP. Ok, a lot of this won't be in 2011, but it's all coming.

A big DITTO to that, Cece!!!!

[EJC]

This would be a hypoplastic vein with a hypoplastic valve, I think.

It was the right Jug that Dr Reid was worried about overtreating especially as it was the first he'd come across where the entire vein was narrow (congenitally they assumed) so he opened this as far as he dared without risking causing any damage.

I have a funny feeling we'll be addressing this particular Vein again at some point in the future.

Did the valve make a 'pop'?

If indeed it is hypoplastic, with Dr. Sclafani investigating the idea of progressive maturation by repeated venoplasties increasing the size each time, we'll find out sooner or later if that works.

Missed this reply Cece, I'm going to read up on this. I did get a PM from Dr Sclafani asking me for Donald Reid's email - which I passed on. I hope it's constructive.

I can see us addressing the problem vein after theories have progressed a little, Emma certainly responds to the treatment and the chances of getting this right first go must be a slim considering how young the whole theory is.

[CD]

Cece said:

I still struggle with too much noise or too much going on, such as when my kids are acting up. I am still worn out at the end of the day, but not worn out, twisted and ground up.

Food still tastes really good. Colors are bright and occasionally shocking

I always had a very strong "Startle Reflex." It drove me wacky. I would jump at the slightest thing, a loud noise, an out of the blue sound, or surprise in my vision view.

Is this what you mean Cece? Or too much going on? A store crowd? The kids at home making too much noise or fighting? The startle reflex is common in MS. Many people don't like crowds, more an anxiety thing, I think.

I happen to love crowds, lots of people are fine, moderately loud noise is okay too, but don't startle or scare me by jumping out in front of me, if I don't see you.

I would drop everything or jump two feet (not really jump) but you know, being very surprised startles me.

I noticed that I am not fatigued at all. After the first month or so my energy really picked up. I am having trouble with the time too. I feel it should be later because I get so much accomplished in very little time. It's a blessing. My days usually would disappear, and it was midnight in a flash.

I think because I used to nap which I don't have to do now. The blood thinner, does give me a odd tired feeling. The shots made me cold, yet sweat, and I never did sweat, well not in years. I think it's the Lovenox shots that started it, thin blood, cold weather? I am still sweating but that could be the Warfarin, I don't know.

Food tastes okay, I never was big on food. But when people mentioned colors being very bright, that I noticed too without realizing it. I know I have colorful vivid dreaming all night long and sleep well, maybe 9 hours or so, but I thought my family each changed their color settings on their TV's.

It was like amazingly colorful on all the TV's. Now I close my eyes in a lit room for a moment, then open them, and the color is so much different, so colorful and strong, bright colors.

I don't understand that part with the eyes closed, then open. Try it. I still don't see in a dark room or may lose my balance in total darkness unless I hold a wall, go figure.

Another observation. I had some vivid dreams on LDN, but I haven't been able to get back on it, since Dec 1 off it, and a few tries in Jan. How LDN made me feel and improve was great, well the CCSVI procedure has made those same benefits 10 times or more, plus add some benefits. I wonder if there is a connection?

Any doctor/chemists/ pharmacy people out there with a theory on LDN and veins?

Sorry to hijack your thread. I, too, wish 2011-2012 brings the same great things for the CCSVI procedure to be world wide, with more knowledge, understanding, benefits, Nobel prizes and tons of funding for the people.

For me it doesn't need scientific written proof, some want it, but even proven, approved, drugs and procedures get pulled off the market.
CD (rambling again)

[Cece]

I always had a very strong "Startle Reflex." It drove me wacky. I would jump at the slightest thing, a loud noise, an out of the blue sound, or surprise in my vision view.

Is this what you mean Cece? Or too much going on? A store crowd? The kids at home making too much noise or fighting? The startle reflex is common in MS. Many people don't like crowds, more an anxiety thing, I think.

No, although I know what you mean. This is more me having difficulty shutting out too much going on at once, so that I can't think straight. Getting ready for dinner, one child doesn't want to do her homework, one child having a meltdown because dinner isn't pancakes, one child dragging over a chair to stand on because he wants to help me ... it is too much at once, it is stressful, I don't last long.

I noticed that I am not fatigued at all. After the first month or so my energy really picked up.

After a month, even! Two days ago, I had another "improvements" day, when new things appeared or got noticed. This time it was the sweating and a definite bump-up in energy.

I like "improvements" days.

I am having trouble with the time too. I feel it should be later because I get so much accomplished in very little time. It's a blessing. My days usually would disappear, and it was midnight in a flash.

Yes, exactly!! Such a blessing.

I think because I used to nap which I don't have to do now. The blood thinner, does give me a odd tired feeling. The shots made me cold, yet sweat, and I never did sweat, well not in years. I think it's the Lovenox shots that started it, thin blood, cold weather? I am still sweating but that could be the Warfarin, I don't know.

How long will you be on the blood thinners?
I've got one more week on mine.

It was like amazingly colorful on all the TV's. Now I close my eyes in a lit room for a moment, then open them, and the color is so much different, so colorful and strong, bright colors.

Interesting. I'm adjusting to some of the colors, but if I concentrate on them I recognize that it is different than it used to be. Was lovestruck by my son's blue eyes again today.

Another observation. I had some vivid dreams on LDN, but I haven't been able to get back on it, since Dec 1 off it, and a few tries in Jan. How LDN made me feel and improve was great, well the CCSVI procedure has made those same benefits 10 times or more, plus add some benefits. I wonder if there is a connection?

I've never tried LDN but have read here that it promotes angiogenesis, so the development of collateral veins. That wouldn't happen quickly, though, if a patient feels better quickly on LDN.