Search found 17 matches

by cmozena
Wed Feb 20, 2013 10:52 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Long term results of CCSVI surgery
Replies: 15
Views: 4055

Re: Long term results of CCSVI surgery

To wrap up my update. As of 10/2010: my walking was getting worse. Moved onto 2 canes for greater steadiness. After last angio 2/2011, down to 1 cane but as of today, still need a cane. Sometimes, the 2 canes are used just to give my hips a rest. I would have loved to experience the freedom of cane-...
by cmozena
Wed Feb 20, 2013 10:33 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Long term results of CCSVI surgery
Replies: 15
Views: 4055

Re: Long term results of CCSVI surgery

Here's my story. Had 2 angios (no stents) last one 2 years ago. Symptoms improved and still remain 'fixed'. 1. Perfect bladder function...was on steady decline with occassional loss of control. Sorry to start with this one but it's current perfection is HUGE. 2. No more random throat tightness. This...
by cmozena
Mon Jun 06, 2011 6:16 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: 24 Hours Post CCSVI, I feel Horrible ! Please Comment
Replies: 26
Views: 7365

your post procedure health?

Hi, I had similar angio #2 post procedure symptoms (chills, heat/cold up and down spine, wiped out energy wise. This subsided in a week and I was out of bed. It's now 4 mos. later and some of the improvements remain (bladder problems FIXED, painful hamstring FIXED, vision clarity excellent) but my w...
by cmozena
Thu Apr 14, 2011 9:05 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 346579

My CCSVI Tracking

CCSVI TRACKING First report: 04/13/2011 MS HISTORY Name: cmozena Male/Female: F Age: 49 Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Jan. 1996 RRMS Lesion locations (most affected side, if known), number: several lesions on brain and alot on spinal cord. MS treatme...
by cmozena
Wed Apr 13, 2011 8:26 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking
Replies: 0
Views: 1549

CCSVI tracking

CCSVI TRACKING First report: 04/13/2011 MS HISTORY Name: cmozena Male/Female: F Age: 49 Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Jan. 1996 RRMS Lesion locations (most affected side, if known), number: several lesions on brain and alot on spinal cord. MS treatme...
by cmozena
Mon Nov 15, 2010 9:13 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2369074

conclusive small studies..?

The sampling size of these studies are not statistically significant yet the conclusions, however, are made on a grand scale! Why have we not drilled down on the Neurology study involving nearly 9,000 MS patients. [/url]http://www.ncbi.nlm.nih.gov/pubmed/20350978 Does anyone know what their criteria...
by cmozena
Fri Aug 27, 2010 9:45 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2369074

SIR's position statement!

I personally think that the position that the Society of Interventional Radiologist has taken is HUGE. They, of course, have the usual caveats that this isn't yet scientifically proven but their closing statement is a 'call to action' "SIR believes that the completion of high-quality studies on...
by cmozena
Thu Aug 05, 2010 6:23 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI: Rant about neurologists
Replies: 31
Views: 7775

Neuro exams..

Here's another point of frustration:

Everytime a Neuro examines me, they check flexibility of ankles and pin swipe the bottom of my feet.

DID THEY NEVER NOTICE THAT THE FEET WERE PURPLE AND COLD? what the ....?
by cmozena
Thu Aug 05, 2010 6:18 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI: Rant about neurologists
Replies: 31
Views: 7775

Drugs -

I do know that it is not productive to whine ..but here goes. These are statements from the Copaxone, Avonex, and Betaseron medication literature: Copaxone: 12 CLINICAL PHARMACOLOGY 12.1 Mechanism of Action The mechanism(s) by which glatiramer acetate exerts its effects in patients with MS are not f...
by cmozena
Wed Aug 04, 2010 9:24 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI Education Program at USF in Tampa, FL 2/18/10
Replies: 36
Views: 11874

nadasuit - I sent you a PM
by cmozena
Sun Aug 01, 2010 7:11 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI Education Program at USF in Tampa, FL 2/18/10
Replies: 36
Views: 11874

USF doc doing study?

To GinR
Is there anymore news on USF doing a CCSVI study? You had indicated Dr. Krolcyk is your mother's Neuro. I'm writing from Jacksonville,FL
by cmozena
Tue Jul 27, 2010 5:04 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: sudden but short remissions
Replies: 5
Views: 2374

I'm so glad this thread was added. I, too, used to have these sudden moments of normalcy. I recall actually feeling a sense of calm as if my body was suddenly relaxed. Then, presto, I would move about freely. After several of these events, I realized these would be short lived. So, each time I made ...
by cmozena
Sun Jul 25, 2010 2:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2369074

To CeCe
Thanks for pointing out the key difference.... I was fixated on the similarities!
The correlation of venous malformation to the outcome of neurologic symptoms nearly identical to MS speaks volumes. Diag. since 96 and never has a Neuro mentioned this possible connection...and I've seen many!
by cmozena
Sun Jul 25, 2010 12:17 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2369074

Here is the NIH link for Arteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact Sheet
(not sure if I copied correctly but you could just google to find NIH and AVM) It's a good read!
http://www.ninds.nih.gov/disorders/avms ... #140203052
by cmozena
Sun Jul 25, 2010 12:06 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2369074

AVM

To Redfern... Yes, I too did great when I was pregnant (3x). The pregnancy thing and the indication that AVM occurs equally in men and women...these are the only two items that differ from CCSVI/MS. The rest of the similarities are blowing my mind. I feel like I struck gold when I found this! The ot...

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