Gibbledygook's Stents

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

Postby daniel » Thu Jul 09, 2009 10:09 am

You can create ISO's with the 'Free ISO Creator' program:
http://www.minidvdsoft.com/isocreator/index.html

You just pop in your CD, open the program, select 'Add Folder' and choose the CD drive, then just create ISO... you can PM me if you need more details
User avatar
daniel
Family Elder
 
Posts: 203
Joined: Tue May 19, 2009 3:00 pm
Location: Toronto, Canada

Postby Jamie » Thu Jul 09, 2009 10:20 am

I will be getting Mel's MRV's and will host them at my website.

I'll make a post when they are up and you can PM me for the link.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby Jamie » Thu Jul 09, 2009 10:22 am

Host the CD images as an ISO that is, I'll also host full resolution images for anyone to download.

When we have the follow up in 2 months I'll post those images too.

Should be enough to pique a doctors curiosity.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby gibbledygook » Thu Jul 09, 2009 10:40 am

I'll try my best to get this done on powerpoint for everyone to see/use but it all depends whether the radiologist at St George's can manage. I've also got a meeting on the 21st with a radiologist at Univesity College London so hopefully one of these two pros can manage to at least find the right scanned images from the thousands of files that are on the CDs.

The film is a documentary which a friend has been putting together to document her diagnosis the year before last with MS. They came and filmed me walk during my relapse of early 2008 and have got some quite good cuts and the basis of a documentary. She is a Londoner who makes documentaries for a living so there's a reasonable chance it goes live but there's a lot of ifs there! However I'm sure she could put it on Utube if she fails to get the money from any of the main channels.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1412
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby Jamie » Thu Jul 09, 2009 10:44 am

That would be fantastic!

If this could be part of her film - what great publicity!
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby peekaboo » Thu Jul 09, 2009 10:50 am

that's really cool...Youtube gets alot of hits for a plan B...

Thanks Alex for being our ambassador in the UK
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby Sharon » Thu Jul 09, 2009 11:40 am

Alex you wrote
Maybe I was more fatigued than I knew although I certainly have never found fatigue debilitating

Ditto - I even told Dake that fatigue was not one of my symptoms. I am wondering if it is more of a mental response - the head is a little clearer and you feel like doing more things. And, to think we are all on these big doses of blood thinners which can cause tiredness. Once we get off of them, we may give the Energizer Bunny competition!

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby CureOrBust » Thu Jul 09, 2009 8:00 pm

gibbledygook wrote:I'm also smiling a lot. 8)
That's just the "muscle relaxant" talking :)
User avatar
CureOrBust
Family Elder
 
Posts: 2899
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby CureOrBust » Thu Jul 09, 2009 8:17 pm

Alex, you mentioned your jugular stenosis was obvious, even to a layman. If you can view this image on your computer, and are running windows, try the following:

1. Get the image up on your screen
2. hit the "Print Screen" key on your keyboard
5. start the application "Paint" (you will find it under Start/All Programs/accessories in Win XP)
6. select the "Edit" menu, and then the "Paste" item in the menu list

You should now see an image of the screen you saw in step 1. Save this file as a JPG, and then you can use whatever to place it on this website.

If you are running a Mac, I am sure there are similar options. But it all depends if you can view the images in Windows.
User avatar
CureOrBust
Family Elder
 
Posts: 2899
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby daniel » Thu Jul 09, 2009 8:20 pm

If you're on a mac, you would just get the image on the screen, and hit Command+Shift+3 and you'll get a Picture.pdf or Picture.jpg file on your desktop.
User avatar
daniel
Family Elder
 
Posts: 203
Joined: Tue May 19, 2009 3:00 pm
Location: Toronto, Canada

Postby mrhodes40 » Fri Jul 10, 2009 7:10 am

go! go! go! Alex!!! yeah team! Woohooo!!

(you're workinghard at this I just thought I'd help)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby gibbledygook » Fri Jul 10, 2009 7:33 am

Yes, I meant when I was in Professor Dake's room and he showed me the jugular constrictions all nice and clear!!!! Now I'm stymmied to produce a nice big picture. So far. Monday's coming though and this bone surgeon friend sounded quite positive about my chances of succeeding with the radiologist, with cash payment procurements perhaps facilitating the expenditure of time on the radiologist's part...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1412
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby CureOrBust » Fri Jul 10, 2009 8:06 am

gibbledygook wrote:with cash payment procurements perhaps facilitating
Well, usually it is the "plumber", that wants to be paid in "cash".
User avatar
CureOrBust
Family Elder
 
Posts: 2899
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby gibbledygook » Fri Jul 10, 2009 8:32 am

Just an update on the MS symptoms about 2.5 weeks after surgery. I am also sleeping on an inclined bed so maybe that is also having an effect. I continue to have much reduced urgency on the bladder front and I am able to void a bit better too but still need manual assistance to void completely. I don't think I need to pursue the catheter plan which 4 months ago I initiated with the NHS. I have had a few spasms last night whilst going to sleep and this morning however they were very mild and seem somehow different to the old spasms. I needed no tizanidine/baclofen and have had no baclofen/tizanidine since the operation. I ventured forth on my own today to a meeting full of serious suits and stood throughout the half hour lunch break talking and eating. The walk thereafter to the taxi wasn't too bad but I was glad for my walking stick. I noticed today the tight bands around both knees which had seemed to disappear immediately after the surgery and walking today hasn't been quite as good as the last few days. My right hand is silky smooth including the index finger and thumb which have in the past always retained some numbness. I honestly can barely tell the difference between my right and left hands. To summarize, I think the MS symptoms immediately improved after the surgery and are now in a state of a small amount of flux. Things seem to be changing, some positively, some a bit negatively. I expect quite a lot of time will be required before things settle down.

My shoulders are still pretty sore. Pain about 2.5 to 3. I slept on a funny, mould-your-head-to-the-pillow pillow last night and awoke with sore shoulders and neck, so I'm not sure about that. It seemed really comfortable to go to sleep on. :roll:
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1412
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby Loobie » Fri Jul 10, 2009 9:11 am

I use a Temper pedic pillow also and was thinking it would really help. I love it because it cradles your head and you wake up in the exact position you crashed in. Oh well, I have plenty of other to try as well! Sounds good Gibbs. I have that knee thing also. Does yours hurt so bad sometimes you can't take it? Mine sure does. It feels like someone took a hammer to it after the tightness comes on.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service