But Doc, I still can't play the piano.

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

But Doc, I still can't play the piano.

Postby CaptBoo » Thu Sep 23, 2010 12:22 pm

Venoplasty yesterday at Atlanta Access Care. Dr. Sullivan and his staff were great. I had Doppler Ultrasound done 2-3 weeks ago at CCSVI-Atlanta. The tech is Zamboni protocol trained. It's 1500 miles from home, but still the closest place I could get into this year and I think time is essential. I was able to get both appointments in less than two weeks from making the call.

For those following my story, it turns out that my stenosis probably had nothing to do with the 1988 neck surgery. Dr. Sullivan found 40% stenosis in my left jug, 40% in two places in my azygos and 60% in my right jug, several inches below the point of surgery. He saw no sign of the vein being tangled with the carotid like the doppler suggested.

I'm not quite willing to proclaim victory. My walking is different and I'm assuming that means improved. It just feels different. Maybe a combination of better balance and better left leg control. I still walk close to the wall in order to have something to bounce off of if needed. But I feel great.

There was absolutely no pain, in fact I slept through the procedure. I can sometimes feel the insertion point in my left groin, but I would not describe it as pain. I feel nothing unusual in my neck or chest. I had a very slight headache yesterday above my left eye, but that can easily have been a "hangover" from the sleepy medicine. I got a blood thinner shot after the procedure, but was given no drugs after that. He said he would have put me on some aspirin, but I'm allergic to aspirin so no chance.

Atlanta Access Care took my insurance and I assume they got it pre-approved. I forgot to ask and they didn't ask for any money.

If I had it to do all over again, I wouldn't change a thing. I know from my walking that CCSVI had something to do with my MS symptoms. Whether this totally solves the problem or not, I know it's changed the game.

Next step is that I return for re-Doppler in a month to check flow.
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Postby Cece » Thu Sep 23, 2010 12:59 pm

Congrats! Glad you were able to get it quickly too.

It's such a change, from pre-CCSVI-thinking, to even be able to do anything that does anything for MS.

Did your doctor have any thoughts on taking ibuprofen instead? Or on avoiding vitamin K? This is not meant as medical advice, because I am not qualified, but I worry for people about the risk of thrombosis.
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Postby vivavie » Thu Sep 23, 2010 1:05 pm

BRAVO!!!

Don't over do it, it is easy to get carry away when we feel good!

I have not seen many reports of post procedure done in Atlanta, do you know how many they have done so far?

Enjoy your NEW life!
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Postby CaptBoo » Thu Sep 23, 2010 1:34 pm

Cece, I was given no post-procedure instruction other than not lifting for a week, not climbing many stairs for 24 hours and not bathing for 48 hours.

Vivavie-This is specifically a new use of venoplasty for Dr. Sullivan. He has been in close contact with Dr. Sclafani. He is a very experienced IR, in fact teaches at Emory University, so there is nothing new in his ballooning veins. He did say he would be very hesitant to use stents at this time and I agreed with that. He is part of a 30 clinic group nationwide and said that they are all looking into offering the procedure and consolidating data.
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Postby SaintLouis » Thu Sep 23, 2010 1:50 pm

Great enws to hear! I've been following your story as I was scanned the same week as you in Atlanta.

Quick question: Do they use IVUS or have an opinion on it? Also, did they enter from the left or right?

Thanks!
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Postby CaptBoo » Thu Sep 23, 2010 2:48 pm

StLouie-I don't think IVUS was used, just standard venography (assuming I know the difference), but that would be a good question for Dr.Sullivan.They went in on the left.
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One week update!

Postby CaptBoo » Thu Sep 30, 2010 8:52 am

Yesterday morning I arose and walked to the kitchen. I don't remember what I was thinking about, maybe going over my dreams. When I got to the coffee pot I realized that for the first time in years I wasn't thinking about MS, I had not thought about my balance and I had not been worried that my foot-fall was going to make me end up on my face. I got pretty emotional.

Things are not perfect, but they are definitely better.
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Postby blossom » Thu Sep 30, 2010 4:55 pm

so glad to hear of your success and all went well. hope is that you keep improving.
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Postby Drury » Thu Sep 30, 2010 7:00 pm

CaptBoo,

Terrific news!!

I have just returned from a two week trip abroad and amazed that you have been treated.

Hope you see more improvements.

All the best,
Drury
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Postby MegansMom » Thu Sep 30, 2010 7:24 pm

CaptBoo,

You may not be able to play the piano but it sure looks like you are ready to dance to some music!

My best wishes to you for continued recovery. Its music to our ears!
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby CaptBoo » Fri Oct 29, 2010 4:42 pm

One month update: Went back to Atlanta for Doppler scan. They sent the report over to the IR. Here's what he just emailed me:

There is no reflux in the internal jugular veins or deep cerebral veins. The technologist said that there was not just absence of reflux (ie, flow in the wrong direction), but high flow in the correct direction in both internal jugular veins, so we have corrected the problem. The valves were abnormal in both internal jugular veins, but they were not causing any abnormal flow.
I would recommend we do no further treatment at this point, and re-evaluate if you see any loss in the progress you made with the angioplasty.
I hope you are doing well, which is the most important measure of what we have done.
Keep in touch, and let us know how you are doing.


My improvements have been about the same since the procedure. No more big changes.[/i]
<div>There be no dragons   ...Reese Palley</div>
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Postby 1eye » Fri Oct 29, 2010 5:58 pm

CaptBoo wrote:One month update: ...
...My improvements have been about the same since the procedure. No more big changes.


That's what I thought. In fact, I thought I was back-slidin'. But you just have to allow for small possibilities, and once you add them up, things are still improving! I don't expect to walk soon, if ever, but handwriting. Eyesight. A little at a time, one day better than the next... And you don't see this, because I am so ornery about correcting, but I don't have to backspace nearly as much. I may not wear out the backspace key after all!

I never *could* play the piano. And I still mourn my hand-made guitar, and playing it. Gonna try a nylon-string ukulele. But I am amazing myself (and everyone else) at how much I can play the piano now. I play by ear, with three note chords mostly. I remember seeing Oscar Peterson after a stroke, and how much he could do with one hand. I've got an excuse. I never was any good. But for the first time in a long time, I feel like I am getting better at something! Show me the MS sufferer who can say that... I couldn't, for most of 20 years.

I hadn't tried it in so long, I'd forgotten how many songs I knew from guitar playing!

So directions to Carnegie Hall remain the same.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Fri Oct 29, 2010 7:41 pm

congrats, that's a good update :)
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Postby elyse_peace » Sat Oct 30, 2010 12:11 am

1eye,
congratulations! :)
i'm so glad to hear of your small (read HUGE) improvements/changes. your report (thanks for taking the time) helps lift my spirits. I think your good attitude goes a long way toward improving things for you. Keep on smiling. Keep getting better! :lol:
elyse
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