CaptBoo@SixMonths

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

Postby scorpion » Thu Mar 24, 2011 1:45 pm

CaptBoo wrote:Mine's an iPad1 but I still love it. Typing is a bit of a challenge, but much better than on a phone.

I was diagnosed SPMS, better blood flow has totally relieved most MS disabilities, the weird leg hasn't gotten any better, but no worse either. Bob's theory of six months without degradation being the normal course of the disease is circling the drain. Since diagnosed I have not had a six month period without degradation until this last six month period. The only change, better blood flow.


Hey Capt. Boo I have not really followed your progress but you said better blolod flow relieved mosts disbailty. If you were referring to yourself I was just curious as to what your improvements have experienced since your procedure.

ThornyRose you should consider putting the first part of your name in bold print for emphasis...
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Postby CD » Thu Mar 24, 2011 2:52 pm

CaptBoo, I'm thrilled that you are doing so well at your 6 month check-up. That is wonderful news. :D :D Keep smiling. May your improvements keep coming and last forever.
CD

I'm real disappointed at the childish or jealous behavior on some threads on ThisIsMS. I used to think this site was for mostly "those" intelligent people. Kidding around is one thing, but picking on a matter of a member's good news and/or better health is disgusting. JMO
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Postby scorpion » Thu Mar 24, 2011 5:17 pm

CD wrote:CaptBoo, I'm thrilled that you are doing so well at your 6 month check-up. That is wonderful news. :D :D Keep smiling. May your improvements keep coming and last forever.
CD

I'm real disappointed at the childish or jealous behavior on some threads on ThisIsMS. I used to think this site was for mostly "those" intelligent people. Kidding around is one thing, but picking on a matter of a member's good news and/or better health is disgusting. JMO


I agree and if you can show where that occurred anywhere in this thread I will report that member myself.
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Postby CD » Thu Mar 24, 2011 6:10 pm

scorpion wrote:
CD wrote:CaptBoo, I'm thrilled that you are doing so well at your 6 month check-up. That is wonderful news. :D :D Keep smiling. May your improvements keep coming and last forever.
CD

I'm real disappointed at the childish or jealous behavior on some threads on ThisIsMS. I used to think this site was for mostly "those" intelligent people. Kidding around is one thing, but picking on a matter of a member's good news and/or better health is disgustingg. JMO


I agree and if you can show where that occurred anywhere in this thread I will report that member myself.


Everyone knows what I'm talking about. It has been with little innuendos, to full out sarcasm. I'm sure these little games a few of the same people play, are just enough to stay under the wire.
Carry on. It's your forum that loses credibility.
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Postby thornyrose76 » Thu Mar 24, 2011 6:26 pm

scorpion wrote:
CaptBoo wrote:Mine's an iPad1 but I still love it. Typing is a bit of a challenge, but much better than on a phone.

I was diagnosed SPMS, better blood flow has totally relieved most MS disabilities, the weird leg hasn't gotten any better, but no worse either. Bob's theory of six months without degradation being the normal course of the disease is circling the drain. Since diagnosed I have not had a six month period without degradation until this last six month period. The only change, better blood flow.


Hey Capt. Boo I have not really followed your progress but you said better blolod flow relieved mosts disbailty. If you were referring to yourself I was just curious as to what your improvements have experienced since your procedure.

ThornyRose you should consider putting the first part of your name in bold print for emphasis...


Now why do that when the whole names says so much?
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Postby thornyrose76 » Thu Mar 24, 2011 6:28 pm

scorpion wrote:
CD wrote:CaptBoo, I'm thrilled that you are doing so well at your 6 month check-up. That is wonderful news. :D :D Keep smiling. May your improvements keep coming and last forever.
CD

I'm real disappointed at the childish or jealous behavior on some threads on ThisIsMS. I used to think this site was for mostly "those" intelligent people. Kidding around is one thing, but picking on a matter of a member's good news and/or better health is disgusting. JMO


I agree and if you can show where that occurred anywhere in this thread I will report that member myself.

Obviously not with you?
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Postby CaptBoo » Thu Mar 24, 2011 7:36 pm

Sorry, but the cute little quote boxes that are so popular here are very difficult on an iPad,so this is in response to Skorp at the top of this page asking about specific improvements I claim are related to improved blood flow. I'm going to pretend he really wants to know.

Prior to venoplasty I had three major complaints; Loss of balance, fatigue and left leg spasticity. As I have stated the leg is unchanged, but at least no worse. Fatigue: Prior to procedure I would walk the dog in the morning, come home and take a nap, wake up at noon, do the dishes and that's the day. Now I walk the dog, work all day, walk the dog again in the evening and then sometimes go out. I just finished the preliminary edit on a movie, ten hours a day six days a week for eight weeks and the dog was never not walked. Probably placebo. Balance: I can stand on one foot again, I can close my eyes in the shower without holding on. I can go up and down the mountain behind my house without constantly falling on my ass.

As a controlled study P=1, The conclusion is that improved blood flow significantly improved the quality of life of 100% of the participant included in this study.
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Postby CCSVIhusband » Fri Mar 25, 2011 9:24 am

CaptBoo
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Posted: Thu Sep 23, 2010 5:34 am Post subject: CaptBoo has been liberated me mateys!
Just out. Both jugs and azygos. Slept through most of it. No pain at all. Very slight headache now. Walking seems easier. I'll rest today and report back tomorrow.


Boo


This was from your first post after liberation ... just wanted everyone to know both your jugulars and azygous were treated.

Perhaps you could detail a little more ... just for those who question you ...

:lol:

Good for you Captain Boo!

One day they're going to believe ... and remember when they knew about this all the way back in 2010 (or earlier in some cases) but then just played these silly little games.

One day we'll have to race our boats through the Caribbean ... (maybe that would be enough proof liberation works - probably not, but at least it'd be fun)
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Postby cheerleader » Fri Mar 25, 2011 9:49 am

CaptBoo wrote:
Prior to venoplasty I had three major complaints; Loss of balance, fatigue and left leg spasticity. As I have stated the leg is unchanged, but at least no worse. Fatigue: Prior to procedure I would walk the dog in the morning, come home and take a nap, wake up at noon, do the dishes and that's the day. Now I walk the dog, work all day, walk the dog again in the evening and then sometimes go out. I just finished the preliminary edit on a movie, ten hours a day six days a week for eight weeks and the dog was never not walked. Probably placebo. Balance: I can stand on one foot again, I can close my eyes in the shower without holding on. I can go up and down the mountain behind my house without constantly falling on my ass.

As a controlled study P=1, The conclusion is that improved blood flow significantly improved the quality of life of 100% of the participant included in this study.


Congrats, Captain. It's nice to be able to work and stay awake all day, isn't it? Jeff's placebo is going on 2 years, now. He also skis again. Continued health and healing. Let us know when your pic comes out. (Jeff's got Wilde Salome with Al Pacino and Last Days at the Oasis for Participant later this year...both docs.) Keep on keepin' on-sorry for the quote box :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Fri Mar 25, 2011 12:25 pm

CCSVIhusband wrote:
CaptBoo
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Posted: Thu Sep 23, 2010 5:34 am Post subject: CaptBoo has been liberated me mateys!
Just out. Both jugs and azygos. Slept through most of it. No pain at all. Very slight headache now. Walking seems easier. I'll rest today and report back tomorrow.


Boo


This was from your first post after liberation ... just wanted everyone to know both your jugulars and azygous were treated.

Perhaps you could detail a little more ... just for those who question you ...

:lol:

Good for you Captain Boo!

One day they're going to believe ... and remember when they knew about this all the way back in 2010 (or earlier in some cases) but then just played these silly little games.


One day we'll have to race our boats through the Caribbean ... (maybe that would be enough proof liberation works - probably not, but at least it'd be fun)


So interested in how everyone is doing but always trying to find ways to build up the tension...
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Postby 1eye » Fri Mar 25, 2011 12:33 pm

I just realized I have been liberated 7 months! Thanks for reminding me... Wahoo! Feels good, don't it?

Shall I name all the songs I have played (by ear) on the piano? That is my most fun thing to do now. I am plotting purchase of a ukelele.

Went out last night and saw Lincoln Lawyer. We were in the front, but it was too close, so we moved farther back. Movies are too loud and you have you sit with you head turned to see the whole screen when you sit at the side in front.
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Postby CaptBoo » Fri Mar 25, 2011 5:08 pm

CCSVIHusband-My idea of racing in the Caribbean is getting the anchor set early, taking a swim and filling a tumbler with Cruzan rum. If that matches your idea, let's do it.

Cheer, the movie I edited probably will not see the light of day, first time director, lack of legitimate funding etc. I just did it because it has been eight years since I was active in the biz and needed to test my chops. I've still got it, or more accurately, I've got it back. The Avid software came right back to me, muscle memory I guess. I'm looking forward to doing more, and that's another big change. So glad to hear Jeff's placebo is holding. Wonder how long we need to call it that? But a rose by any other name, I'll still take it.

And thanks for all the other good wishes. I had 60% stenosis in the right jug, 40% stenosis in the left and 40% stenosis of the azygos. I was Dr. Sullivan's first CCSVI and he was pretty conservative with balloon size and pressure. He's with American Access Care and had talked with Sclafani before Sclafani joined AAC. Maybe that was the point where they thought about joining forces, I don't know. I would be honored if somehow I was involved. Gives me goose bumps just thinking about it.
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Postby CD » Fri Mar 25, 2011 6:10 pm

Congratulations to: 1 eye and CaptBoo. Those less than one year but more than 6 months post CCSVI procedure. Lots of congratulations to those that are one year or more, like Curious and Jeff, et al. Yahoo!

I am only 3 1/2 months post, but doing well, TG.

Like you said CaptBoo, someday this will be looked back on as a very good, and a very important finding, for those with CCSVI and MS.

Anyone else want a pat on the back for being a pioneer? :D
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Postby Johnson » Sat Mar 26, 2011 2:07 am

redact...

Anyone else want a pat on the back for being a pioneer? :D


No, but 10 months, two procedures, and little lasting change later, I am incredibly thankful to Dr. Zamboni, and all the other doctors who have stuck their necks out. (pun fully intended)

It's a long time coming...
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Thanks CaptBoo

Postby MarkW » Sat Mar 26, 2011 3:47 am

Thanks your info CaptBoo. You have given the correct level of detail to describe trends in your MS over a significant period of time. The treatments for stenoses are changing so the method used historically on you is personal to you, say nothing. Six month symptom trends are not usually taken to be placebo or normal variation in MS by experts. Please ignore the naysayer Scorpion and do not give details. In MS the overall trend is invariably downwards but not for you, great news.

Kind regards,

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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