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by JoyIsMyStrength
Sat Jul 03, 2010 7:29 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: To Stent or not to Stent? Concerns
Replies: 55
Views: 12387

No, as I stated previously:
My jugulars were ballooned and improvements only lasted a few days. I sure wish they had used stents.
No stents. At all.
by JoyIsMyStrength
Sat Jul 03, 2010 6:40 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: To Stent or not to Stent? Concerns
Replies: 55
Views: 12387

Here's what I would like to know: How many have had balloon angio only (no stents) and seeing sustained improvements? Very good question, I think people are crying out for some stats on those already liberated. I'm very sorry yours didn't last. Out of curiosity, did you feel any benefit in those tw...
by JoyIsMyStrength
Sat Jul 03, 2010 1:59 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: To Stent or not to Stent? Concerns
Replies: 55
Views: 12387

Here Interrupted, let me bump this again for you. :wink:

Here's what I would like to know: How many have had balloon angio only (no stents) and seeing sustained improvements? My jugulars were ballooned and improvements only lasted a few days. I sure wish they had used stents.

Pam
by JoyIsMyStrength
Sat Jul 03, 2010 6:08 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: interesting find
Replies: 7
Views: 2028

Unbelievable -- somebody buy Dr. Zamboni a bulletproof vest. 8O

Very well-written letter. I visited the link and rated it a "5."

Thanks for sharing.

Pam
by JoyIsMyStrength
Sat Jul 03, 2010 5:59 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2371077

pam....visine might help remove that florida sand from you eye. LOL! Thanks for the tip! :lol: So the purple, swollen foot... would that lead to the possibility of getting treatment that an insurance co might actually cover? That's really what I was getting at. The sand in my eye was making it hard...
by JoyIsMyStrength
Sat Jul 03, 2010 5:34 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 346781

MS HISTORY Name : Pam Male/Female : F Age : 51 Date(s) & type of neurological diagnosis : Diagnosed 4/99 RRMS Probably SPMS now Lesion locations (most affected side, if known), number : 16 brain lesions plus 1 brainstem, 2 large spinal lesions at C1-C4, lumbar unknown MS treatments: Copaxone x3 ...
by JoyIsMyStrength
Sat Jul 03, 2010 4:21 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2371077

Hi Dr. Sclafani, A friend of mine (*wink, wink*) had a venogram showing stenosis in both jugulars, treated via angioplasty, saw improvements for a week, then woke up one day back to square one. Now, same as before treatment, the patient's left foot is so purple the toes look almost black but this is...
by JoyIsMyStrength
Sat Jul 03, 2010 4:00 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Going to Katowice, Poland from June 23-30
Replies: 47
Views: 12161

I'm sorry I haven't updated this. I had some wonderful improvements: - Fatigue cut in half - Balance greatly improved - Able to walk slowly unassisted (but probably would at least need a cane as foot drop still there) - Faster movements, e.g., getting in and out of the car no longer a prolonged, slo...
by JoyIsMyStrength
Sun Jun 27, 2010 8:57 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Going to Katowice, Poland from June 23-30
Replies: 47
Views: 12161

Greetings from Poland! What a tiring, fascinating, fun, frustrating, heart warming, puzzling, funny... long list of adjectives... trip! I am going to make this brief and fill you in more when I'm home with a "real" keyboard instead of this cramped laptop. I had the procedure yesterday, qui...
by JoyIsMyStrength
Thu Jun 24, 2010 12:24 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Lumbar veins and left vs right femoral
Replies: 12
Views: 4096

This just in from Dr. Sclafani (thanks Doctor!!): 2. The reason to look for a May thurner syndrome is not because anyone thinks there is an association. Zamboni only found about 3 patients in more than 100 patients. The reason to look is that WHEN it is present, blood is shunted through the ascendin...
by JoyIsMyStrength
Thu Jun 24, 2010 12:14 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Going to Katowice, Poland from June 23-30
Replies: 47
Views: 12161

We are here but quite exhausted from our trip. Nice hotel. Tried to meet up at the Sky Bar tonight but left by 8:15pm. We hope to see our group tomorrow, then. Thanks for all the well wishes!

Pam
by JoyIsMyStrength
Tue Jun 22, 2010 6:24 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Going to Katowice, Poland from June 23-30
Replies: 47
Views: 12161

Hey everyone, we recorded my pre-liberation videos and uploaded to YouTube. Please do not send off to any Hollywood producers or else my dreams of stardom will be dashed... although I did notice there was a Pamela Anderson video on the same page and I'm sure you'll notice the striking resemblance, L...
by JoyIsMyStrength
Tue Jun 22, 2010 6:08 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Lumbar veins and left vs right femoral
Replies: 12
Views: 4096

All of this is very interesting, lots of valid points. This forum is so smart. Here's another question. If a person has May-Thurner syndrome, wouldn't it be an important thing to know? I mean... it can lead to deep vein thrombosis (which is how M-T syndrome is usually discovered). DVT can be life th...
by JoyIsMyStrength
Tue Jun 22, 2010 3:54 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Brit going to Poland
Replies: 53
Views: 12363

Good job Martin!
by JoyIsMyStrength
Tue Jun 22, 2010 12:20 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Lumbar veins and left vs right femoral
Replies: 12
Views: 4096

I agree with you. I think what gives me pause is this: Maybe it can't be treated and maybe it's even riskier in some way to enter from the left, but what can we learn from it? What if no other stenosis is apparent? It would give answers I think.

Pam

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