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Cece wrote:

NZer1 wrote:Hi Dr. S thank you so much for the time and explanation. Thank you Cece for sharing with us.
I have wondered if there is also a twist in the vein at the region of the two wastes?
Regards Nigel

I see what you were seeing there, Nigel, do you think it's a twist? Has anyone had a similar looking vein described as a twist?

oit may look twisted, but it is not twisted.
it is a funnel shaped narrowing formed by valve leaflets that are fused.

CeCeSVI,

Was there any "pop" during any of the valve dilations?

edit:

(and were you wearing lipstick? You definately look like you were smiling!!!)

Yes, lipstick, always....

Who was it that wore dolphin earrings for their venogram? Now that was cute.

When Dr. Sclafani ballooned the first jugular, on the right, that hurt. My face turned beet red. Since the other jugular was 100% blocked, the right side with its 80% blockage was a major outlet.

When he deflated the balloon the first time, my head felt better, he explained that it meant the other one was blocked too and that he'd keep the inflation times short because of it. Thankfully the stenosis gave way on the next inflation. Then within a minute or two I noticed the music had changed, my head was clearer and my breathing was easier. What relief and joy.

The left jugular was much easier. There was still pain when he ballooned it, but none of the head discomfort from completely blocked flow as it had been on the right.

Throughout the procedure Dr. Sclafani and Smitty seemed to be in the "zone" or "flow" - how do you explain this? I always think of it in terms of writing, when I am lost into it and it comes without effort.

There was never any pop. I cannot remember why or I did not catch the reasons, but a pop may now be a bad thing instead of a good thing.

Cece wrote:Yes, lipstick, always....

Who was it that wore dolphin earrings for their venogram? Now that was cute.

When Dr. Sclafani ballooned the first jugular, on the right, that hurt. My face turned beet red. Since the other jugular was 100% blocked, the right side with its 80% blockage was a major outlet.

When he deflated the balloon the first time, my head felt better, he explained that it meant the other one was blocked too and that he'd keep the inflation times short because of it. Thankfully the stenosis gave way on the next inflation. Then within a minute or two I noticed the music had changed, my head was clearer and my breathing was easier. What relief and joy.

The left jugular was much easier. There was still pain when he ballooned it, but none of the head discomfort from completely blocked flow as it had been on the right.

Throughout the procedure Dr. Sclafani and Smitty seemed to be in the "zone" or "flow" - how do you explain this? I always think of it in terms of writing, when I am lost into it and it comes without effort.

There was never any pop. I cannot remember why or I did not catch the reasons, but a pop may now be a bad thing instead of a good thing.

I am rethinking this pop thing

i am thinking there are two problems to be considered. One is the fusion or malformation of valve leaflets that funnel down to form a narrowing. This is easily seen on IVUS. Balloon dilatation in the range of 8-13 Atmospheres is the rule.

I think there is also a hypoplasia of the valve annulus. In other words, the stiff collagen scaffold that valves attach to is narrow. It does NOT resolve with m dedium pressures. Pressures as high as 20-30 Atm are used and sometimes the balloon waist remains. Such stenoses are a real challenge. Larger balloons may be effective but these risk stretching the normal vein above the annular stenosis. It is these stenoses that go POP.

Now i use the medium pressures several times in the hopes of breaking through. If all else fails i will use very high pressures and hope for the best. After all a 4 mm annulus is not going to allow much blood through.. The risk of thrombosis is probably worth it. As i begin to distinguish these two entities, it will become clearer what will be the best approach. If the thrombosis rate of annulus angioplasty is too high, then surgical excision may become the preferred option.

It is genuinely fascinating seeing the entire theory of CCSVI and it's treatment evolve in this manner.

Patient and specialist interaction in real time, in public, on open forum.

This absolutely must be accelerating world wide understanding of the condition.

EJC, it is wonderful, isn't it.

Now I understand, it is better to have fused leaflets than to have a hypoplastic annular stenosis. With fused leaflets, no pop. With hypoplastic annular stenosis, you want it to pop.

CeCe,

I am so happy to read about your impovements, and relieved, too. In my strange way, I felt personally responsible for the outcome, as Dr. S probably felt.

I'm glad I got to meet you, your husband and daughter prior to you procedure, and wish I was in town to see you afterwards. I have a sneaking suspicion we'll see eachother again, and not because you'll be coming to NYC fo a touch-up!

Michelle

bestadmom wrote:CeCe,

I am so happy to read about your impovements, and relieved, too. In my strange way, I felt personally responsible for the outcome, as Dr. S probably felt.

I'm glad I got to meet you, your husband and daughter prior to you procedure, and wish I was in town to see you afterwards. I have a sneaking suspicion we'll see eachother again, and not because you'll be coming to NYC fo a touch-up!

Michelle

Michelle, thank you for sending out hundreds of letters to IRs and getting a reply, for interesting Dr. Sclafani in CCSVI, for having the bravery to go for treatment, for having CCSVI so that Dr. Sclafani's interest wasn't lost, for passing me his name here at TIMS, for encouraging me during the many months of waiting. I enjoyed our dinner very much. Yes, I look forward too to our next meeting-up. It would've been at the CCSVI Walk-and-Roll in FL if I could've swung it! You guys are going to have fun.

Count-up: One week post procedure

This is interesting. Two days ago, I noticed some headaches. Yesterday, I took out my contacts because it relieved the headaches. Today, I got in to see an optometrist.

First the puff-of-air-to-the-eye test and the retinal map test and the prescription-measuring machine, then a bit of waiting, then my optometrist comes in and says, "The machine says your vision got better," in a puzzled voice.

I have a theory on why....

I left with a set of new contacts to try out. He kept my prescription the same in my left eye but lowered it in my right eye. It's comfortable, unlike yesterday. It was not much of a change (from -4.75 to -4.5) but it's notable that my prescription has been very stable through the years and it has never before improved.

My other improvements are holding:
- reduction in fatigue, around 60%
- cogfog improvements
- memory improvements (e.g., when reading a magazine, can I remember what was on the page before that I just read? I noticed impairments in this after my relapse five years ago, I noticed improvements this week. At its worst these memory impairments interfere with conversation: I say something, you say something back, I no longer remember what I said previously, who knows what I might say next....)
- increases in my ability to see colors, including saturation and brightness, in this order: purple, red, blue, orange, yellow, green.
- balance improvements, most noticeable when putting on socks or shoes while standing
- deeper sleep with more extensive dreaming
- better posture
- easier breathing
- easier to pick things up off the floor
- more comfort, less discomfort
- less bladder urgency
- less bladder retention
- increased appetite
- improved residual foot drop
- completely gone numbness from left arm

CaptBoo mentioned less recovery time is needed for him, I will see as I get back into my usual swing of things if that is true for me as well. Would like that to be so!

My feet, however, are still pretty cold. My husband has gotten excited over my hands being warm and, on two occasions, clammy, which he says they have never been before. Sorry, hard to get excited over clammy hands, but it fits with the improvements in sweating that others have mentioned.

Very, very glad to have had the procedure done.

Cece wrote:
Very, very glad to have had the procedure done.

Very, very glad to hear this, Cece.

Cece wrote: First the puff-of-air-to-the-eye test and the retinal map test and the prescription-measuring machine, then a bit of waiting, then my optometrist comes in and says, "The machine says your vision got better," in a puzzled voice.

I have a theory on why....

I left with a set of new contacts to try out. He kept my prescription the same in my left eye but lowered it in my right eye. It's comfortable, unlike yesterday. It was not much of a change (from -4.75 to -4.5) but it's notable that my prescription has been very stable through the years and it has never before improved.

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.

She changed from 6/9 to 6/7.5 which when combined with the other visual improvements generated a 20% improvement in vision.

I've described the "seeing in HD" that you and some others have described and she agrees that is a good way to describe it.

Emma is now procedure + 7 weeks.

We've noticed she has way more strength in her legs, she got herself up off the floor yesterday unaided which would have been simply impossible 8 weeks ago, she would have had to have been lifted up bodily.

However, the balance has yet to improve, it's as though the circulation has started to aid muscle recovery but the 13 years damage to the nervous system is taking a lot longer.

This means Emma is still wall surfing, but not through lack of strength only lack of balance.

She chose to quit Copaxone this week and after 5 days off it there's absolutely no noticeable change whatsoever.

Actually the list of improvements you've drawn up are pretty comparable to Emma, although the degree of improvement is difficult to quantify.

It's nice to see Emma excited about the future rather than wondering how long she has remaining able bodied.

The single biggest improvement is Depression, it hasn't gone completely but she has gained enough motivation to start coming off the anti depressants at a slow pace.

EJC wrote:

Cece wrote: First the puff-of-air-to-the-eye test and the retinal map test and the prescription-measuring machine, then a bit of waiting, then my optometrist comes in and says, "The machine says your vision got better," in a puzzled voice.

Emma's eyesight improved to almost the same degree.

Her optician also said

If you have a medical problem wouldn't you go to somebody with an M.D. after their name?
Ophthalmologist are the only ones that have to get an M.D degree before they can enter an Ophthalmology residency. Optometrist have never seen a medical school and Optician can only prescribe glasses.
For instance I never use the puff of air test because is just not reliable. I always use the applanation tonometry test.
Ophthalmologist are more adept at looking at the retina and optic nerve and interpret the findings; they can also prescribe any medicine and do surgery.
So my advice, since you have a medical condition, is to find a good Ophthalmologist and follow up with him/her.

Emma needed new glasses, so funnily enough we went to the optician (who is a optometrist), who after testing advised her her prescription had changed.

You figure someone needs a PHD to tell her this?

(We're in the UK BTW - MD is Managing Director over here.)

Emma's Opthalmologist is interest in these results, he does actually rate the optician she goes to, but due to the unique way the Health Service works here in the UK it will probably be a good 4-6 months before we get the appointment to see him. We're still waiting, not with baited breath.

Nunzio, that is good advice, thank you.

My MS specialist is also a neuro-opthalmologist, but I am not sure if he is doing all the tests a more generalized opthalmologist would do. It seemed like plenty of tests, last time I ran the gamut, which was two years ago!

Dr. Sclafani asked me after the procedure, when I was dazzled by the colors, when the last time I'd seen an opthalmologist was. It was a bit of a confusing question: I'd seen him a month ago, but no opthalmology was performed, only a good deal of ranting on ccsvi.

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?

EJC wrote: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.