2nd time lucky?

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

2nd time lucky?

Postby PointsNorth » Wed Aug 17, 2011 4:25 pm

10 months after a trip to Albany and getting some results (fatigue, cogfog) albeit for only 8 days, I thought I would try again. This time in Brooklyn, NY.

Having followed Dr. Sclafani’s thread since day one, I was officially converted after reading about IVUS on several threads. Being able to confirm the location of stenoses while avoiding under/over treatment seemed pretty compelling to me.

After a consult with Dr.S on Thursday (Aug 4th) I prepared to come in early Saturday AM but I did not hit the table until 4pm. Dr.S had a challenge on the Friday which subsequently needed more attention on Saturday morning. My procedure was not case-study material with only garden-variety valvular stenoses found in both jugulars. I got a chance to see IVUS in action.

Got a bite to eat near our hotel and walked 3-blocks home (hotel). I felt as though I could’ve walked another ½-mile but thought I shouldn’t tempt fate.

Next few days were interesting as I had improvement in a variety of areas beyond cogfog & fatigue.
• Spasticity completely resolved (as far as I could tell)
• Cogfog as well
• Fatigue improvement but not as dramatic as in Albany
• No improvement in balance :(
• Bladder: little or no urgency after beer(s)
• Reduction/elimination of visual disturbance when twisting head

Heat & humidity was troublesome for this westcoast rainforest kid. Along with changing hotels, plane and car travel, the following week was a challenge. If I go back East again it will be in Spring or Fall!

I’ve been back home for almost a week now and my symptom profile is pretty much where it was before embarking for Brooklyn. I will stay in touch with Dr.S and see what he suggests at this point.

Given that I have pre-existing intestinal challenges (MS+Crohn’s Disease) I found the Pradaxa (anticoagulant) very hard on the bowel. I’m continuing to manage by using Imodium twice daily. I would think that others might be having similar problems?

I’ve been pleased with the level of care and attention at both Albany & Brooklyn. I especially appreciated the pre-procedure consult in Brooklyn. It is good to know that Dr.S lives outside our virtual reality but moonlights nonetheless.

Just around the corner from the doctor was a guitar shop and I thought that one could bring along their guitar to have its neck “set up” while having their other neck worked on ;)

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Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
DrG B12 Transdermal Spray 2014-
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
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Postby Cece » Wed Aug 17, 2011 8:24 pm

Next few days were interesting as I had improvement in a variety of areas beyond cogfog & fatigue.
• Spasticity completely resolved (as far as I could tell)
• Cogfog as well
• Fatigue improvement but not as dramatic as in Albany
• No improvement in balance
• Bladder: little or no urgency after beer(s)
• Reduction/elimination of visual disturbance when twisting head

Heat & humidity was troublesome for this westcoast rainforest kid. Along with changing hotels, plane and car travel, the following week was a challenge. If I go back East again it will be in Spring or Fall!

I’ve been back home for almost a week now and my symptom profile is pretty much where it was before embarking for Brooklyn. I will stay in touch with Dr.S and see what he suggests at this point.

I don't know whether to say congrats or sympathies. You had new symptom relief that you weren't expecting but it only lasted those first few days? That would be sympathies, then. Why do you think the improvements are gone so fast? Do you think it's restenosis?
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Postby dania » Wed Aug 17, 2011 8:44 pm

Sorry your second time does not seem to have given you lasting improvements.That's what happened with me too, and a lot of others. Well, maybe one day they will have the answer to this problem. It is so disappointing.
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Postby civickiller » Wed Aug 17, 2011 9:24 pm

normally i would suggest Upper Cervical Care, to see if you could benefit from it but i wouldnt want it to interfere with anything. idk if thats possible. but it still doesnt hurt to see if you could benefit from it
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Postby hope410 » Thu Aug 18, 2011 12:59 am

I'm sorry your experience didn't have a more enduring outcome, you must be disappointed.

What is your sense of where you are? Re-stenosis? Blood clot in spite of blood thinners?

How were the sites of your original angio? Were they still open or were they where you had to have worked on again with Dr. S?

How long did your procedure take? And was it painful? How are you feeling about it all?

Thanks for sharing. I'm very sorry the outcome was not what you had hoped for, especially after the early potential you experienced. Such unpredictable treatment outcomes we have!
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Postby Cece » Thu Aug 18, 2011 8:00 am

I've wondered if perhaps, when early improvements are lost very quickly, it could be that the venoplasty overstretches the vein. So for a short time we experience what it would be like to have larger veins than we really do.
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Postby PointsNorth » Thu Aug 18, 2011 9:56 am

THANK YOU for your excellent comments everyone. I will try to address them over the next few days.

I'm thinking that I should have an U/S, something I never did after Albany. When I feel cogfog improvements slip away along with worsening fatigue I'm thinkin' restenosis . . . but I shouldn't self diagnose.

Veins with attitude - like my new Corgi puppy.
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
DrG B12 Transdermal Spray 2014-
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
PointsNorth
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Posts: 536
Joined: Mon Sep 04, 2006 2:00 pm
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