Delayed improvements, anyone?

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

Delayed improvements, anyone?

Postby MS_HOPE » Sat Mar 12, 2011 9:08 am

If you experienced no improvements for at least the first week or so after CCSVI angioplasty, but then had later significant improvement(s), will you kindly post here? You will be helping those of us who don’t know whether to accept our new place in the ranks of the unimproved and move on, or to maintain realistic hope for better results ahead.

Despite treatment almost two weeks ago for five stenoses that were found, I’ve had not a bit of symptom improvement. Thought I’d be a prime candidate for the “on the table, warmth and normal color flowing back to the foot” variety of results, but I couldn’t eke out even the tiniest of a placebo response. LOL

I’m very happy with the way my procedure went, the thoroughness of the doctor, and the restored blood flow. It just hasn’t helped my symptoms (so far).

Would love to hear some stories of hope. Thank you!
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Postby Cece » Sat Mar 12, 2011 9:26 am

Did you get treated locally, MS_HOPE? There is an American Access Care in North Carolina, when I was at the Brooklyn AAC there was a tech being trained in CCSVI ultrasounds because she was being transferred to the North Carolina branch. I ask because I am reminded of pklittle's case, who had no improvements and then was found months later to have had an early clot, and bizzy's case, who had no improvements and then was found at her 1 month appointment to have had a clot. (Pklittle and bizzy, I hope it is ok to mention your names?) It could be a reason to get a cheap doppler ultrasound to check for a clot before months pass.

Gradual improvements is definitely one of the possible courses, Dr. Siskin placed a third of people he saw into that category!
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Postby 1eye » Sat Mar 12, 2011 9:27 am

I'm sorry you did not have immediate results. Remember the rule of thirds. You may be in the middle group. I had immediate results that were apparent to everyone but me. I was kind of hoping for major things, so I didn't notice the minor. However, I take them being there (clearer speech, mood improvements, piano playing eventually) as a good sign, and I'm kind of fighting harder than I was to try to improve the rest in the longer term. I think the best signs I have had are that no matter how small the changes, they seem to be mostly in the direction of "better", and that they are continuing to arrive almost daily, after 7-8 months. Yesterday I felt my fingertip better than I think I have since about 1989. Placebo, schlemebo, who cares?

But ya gotta work at it.

Do you have warmer toes? A rosier complexion?
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby MS_HOPE » Sat Mar 12, 2011 9:45 am

Cece wrote:Did you get treated locally, MS_HOPE? There is an American Access Care in North Carolina, when I was at the Brooklyn AAC there was a tech being trained in CCSVI ultrasounds because she was being transferred to the North Carolina branch. I ask because I am reminded of pklittle's case, who had no improvements and then was found months later to have had an early clot, and bizzy's case, who had no improvements and then was found at her 1 month appointment to have had a clot. (Pklittle and bizzy, I hope it is ok to mention your names?) It could be a reason to get a cheap doppler ultrasound to check for a clot before months pass.

Gradual improvements is definitely one of the possible courses, Dr. Siskin placed a third of people he saw into that category!


Thanks, Cece. I'd understood that that 1/3 of patients had experienced smaller, less significant improvements, not necessarily delayed ones, but if you're right (and I'd bet on you over me!), that's definitely good news!

Yes, I was treated locally, by Dr. McGuckin, at Vascular Access Centers in Durham. (He's the founder and CEO of VAC, which has clinics around the nation. He and five or so other VAC doctors are treating at the various clinics, so MS patients don't have to travel so far.)

So glad to hear that AAC will have a trained technician in Cary doing the Doppler ultrasound! I'd decided that I really liked Dr. McGuckin's approach and philosophy, so decided to go with him rather than AAC for the procedure, but what a luxury to have had a choice of two local treatment sites, and no wait! Thanks for the info!
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Postby MS_HOPE » Sat Mar 12, 2011 9:53 am

1eye wrote:I'm sorry you did not have immediate results. Remember the rule of thirds. You may be in the middle group. I had immediate results that were apparent to everyone but me. I was kind of hoping for major things, so I didn't notice the minor. However, I take them being there (clearer speech, mood improvements, piano playing eventually) as a good sign, and I'm kind of fighting harder than I was to try to improve the rest in the longer term. I think the best signs I have had are that no matter how small the changes, they seem to be mostly in the direction of "better", and that they are continuing to arrive almost daily, after 7-8 months. Yesterday I felt my fingertip better than I think I have since about 1989. Placebo, schlemebo, who cares?

But ya gotta work at it.

Do you have warmer toes? A rosier complexion?


Thanks for your response, 1eye - so glad you're continuing to improve! No - no difference here in foot/toes or complexion (or anything!). But I'll strive to be patient and assess longer term results, which I hope will follow. And yes, I agree, I do have to work at it, as my husband also reminds me! I walked a longer time/distance than usual two days ago, but then yesterday was walking much worse. I know the ups and downs are to be expected. Will continue to hope that the overall trajectory is positive.

Happy to hear of any other longer-term success stories, folks!
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Postby Cece » Sat Mar 12, 2011 10:06 am

MS_HOPE wrote:So glad to hear that AAC will have a trained technician in Cary doing the Doppler ultrasound! I'd decided that I really liked Dr. McGuckin's approach and philosophy, so decided to go with him rather than AAC for the procedure, but what a luxury to have had a choice of two local treatment sites, and no wait! Thanks for the info!

Absolutely, that is great. Especially as all these doctors continue to gain in experience at treating CCSVI. Cheer has been advising that we go local for over a year, but it is only now becoming more of a practical and possible thing to do. My reason for mentioning local possibilities in your case is in the hopes that you will go for an early ultrasound follow-up. Some doctors schedule these at one month, but I don't know though if Dr. McGuckin is among them! I am glad you've gotten your treatment, MS_HOPE, and will be watching for updates from you. May those gradual improvements be yours.
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Postby soapdiva884 » Sat Mar 12, 2011 11:47 am

My bf John had his first procedure in Nov 2010 and had a huge improvement in fatigue, it was gone! Improved swallowing, cog fog was almost gone too. However, he formed a thrombosis and all of the benefits went away and he got worse in every aspect.
John just had the procedure done again last week and there are no improvements whatsoever this time! He had some ballooning of the opposite jugular, but the thrombosis blocked Dr. Sclafani from getting through that jugular.
So, as of right now there are no improvements from the second procedure. But, who knows? Maybe down the line. I can tell you that Dr. Sclafani says he is trying to stop or slow progression and that can not be foretold until later on down the line.
All the best to you!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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