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by mrhodes40
Sat Jan 23, 2010 7:09 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Second opinion
Replies: 26
Views: 7617

Welcome Berries, THANKS for adding your experience. "ordinary" yes! Hi Cure! Glad to see you!. Yes he was most interested in my results. I found it really interesting also that he wants ALL the operative material--the venogram is a movie, and he plans to watch it all and read every word of the opera...
by mrhodes40
Sat Jan 23, 2010 6:36 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Congratulations...
Replies: 29
Views: 5185

I am here today and want to add to this, Cheer you are the greatest!! I am so glad for your thoughtful efforts on behalf of others, THANK YOU!! I am glad to be part of the merry band of persons who have benefited from your tireless efforts. By all rights you could have moved on, that you continue to...
by mrhodes40
Sat Jan 23, 2010 2:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Second opinion
Replies: 26
Views: 7617

Thanks for the responses; it was an interesting visit to be sure. I realize looking at it that I never mentioned that Radek had a stent migration in my post. Surgery is not without risks and I do not want to leave an impression of "NO risk". there are still risks and everyone needs to ask the questi...
by mrhodes40
Sat Jan 23, 2010 12:38 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Second opinion
Replies: 26
Views: 7617

"metal stent" a scary picture Yeah I know!! it has changed me COMPLETELY to hold this in my hand. NOTE there are other stents, this was MY stent type. I would encourage anyone considering this surgery to be sure and hold the stent, it makes a huge difference mentally. Calling it "hardware" is a rea...
by mrhodes40
Sat Jan 23, 2010 11:36 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Second opinion
Replies: 26
Views: 7617

Second opinion

http://www.thisisms.com/ftopic-9541-0.html In another thread Prof8 detailed a visit to a neural radiologist and a positive outcome from that conversation. See that thread above. I consulted an interventional neuroradiologist this week as well. I have not been on the board much because I'm working no...
by mrhodes40
Tue Jan 12, 2010 10:35 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Gibbledygook's Stents
Replies: 227
Views: 36222

pregnant :D :D :D :D :D :D :D :D :D :D :D I am so happy for you! I also think that we need to keep perspective in that the nerves are damaged and will always function less well if we are warm because they have actual scars on them. It may be immunological or it may be that. My neuro told me years a...
by mrhodes40
Sat Dec 19, 2009 4:13 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI - Aussie Action!
Replies: 851
Views: 176122

The second thing is that I look about 5 years younger. Everyone is commenting. My face has more colour and vibrancy and some age lines are gone, with a smoother complexion; again where I didn't appeciate there was even a 'problem' beforehand. I had this dramatic difference as well, everyone from my...
by mrhodes40
Sat Dec 19, 2009 3:13 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: PubMed references Zamboni's papers
Replies: 4
Views: 2132

I like this new paper and will be excited to read the whole thing. We knew that some of Dr Zamboni's patients were being followed at JNI, wobbly is one of them. There are at least 2 treatment groups, the liberation group which was reported on recently which included 18 month results on 65 patients; ...
by mrhodes40
Sat Dec 19, 2009 3:00 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI RESEARCH here
Replies: 190
Views: 141459

Thanks! I updated the research post on the first page!! :D
by mrhodes40
Fri Dec 18, 2009 8:12 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Shoulders!!!
Replies: 30
Views: 8335

Shoulders!!!

We have GOT to do a thread on the shoulder issue. PLEASE post on this thread only if you have had a shoulder issue and want to say how it is for you and, if you can, also please share any therapy you have had and what works. I had stents placed May 19 '09. I was person 2. I have a 12mm stent on the ...
by mrhodes40
Fri Dec 18, 2009 7:02 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: THANK YOU FOR SUPPORTING HOLLY
Replies: 13
Views: 3257

Holly is not forgotten. Her legacy lives on in how she touched so many of us. I was trepidatious seeing your name--and laughed when you told the story of where it came from. Thank you for reaching out and saying hello to us Jerkbutt!!
by mrhodes40
Fri Dec 18, 2009 5:18 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Normal MRV...contact help?
Replies: 11
Views: 3075

To me this is the area where we can get ahead of ourselves in a very negative way; getting MRV's dopplers and other testing in the assumption this is just going to show up the same an MS lesion does: as if ''it's there or not'', when in reality there is a need for education to even be able to find i...
by mrhodes40
Fri Dec 18, 2009 4:57 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Normal MRV...contact help?
Replies: 11
Views: 3075

brother...talk about double post
by mrhodes40
Fri Dec 18, 2009 4:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Normal MRV...contact help?
Replies: 11
Views: 3075

Well I edited because I am a terrible typist and ended up with double posts. I am so sorry, overtired I guess :oops: :oops:
by mrhodes40
Wed Dec 16, 2009 11:42 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: My friend James at Stanford
Replies: 35
Views: 8607

He let me know that he is feeling better Big Time! Might be slow in recovering his lost mobility but he is definitely more positive about what the future has to offer. He is sleeping better than he has in years. The numerous nightly pee breaks are down to just one or two. Wow Mark, how nice for you...

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