Search found 13 matches

by longman111
Sat Jan 15, 2011 11:43 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 283725

CCSVI TRACKING [Please use date format MM/DD/YYYY] MS HISTORY Name: lm111 Male/Female: Female Age: 54 Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 6/2008 PPMS Lesion locations (most affected side, if known), number: none - diffuse damage MS treatments: Ldn. Steroid Inf...
by longman111
Sun Dec 19, 2010 1:25 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointment dates for Albany Community Care
Replies: 263
Views: 49311

Treatment initial result 12/17

My wife was treated on 12/17 by Doctor Mandato at Albany Medical Center. The Doctor and staff were wonderful. Both jugulars had stenosis and were treated with angioplasty. So far the early changes are: Severe right hand tremor gone - able to write name for the first time in several years. Less slurr...
by longman111
Thu Dec 02, 2010 12:15 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointment dates for Albany Community Care
Replies: 263
Views: 49311

My wife is still scheduled for 12/17 but a complication arose about 2 weeks ago. She is scheduled for the procedure at the Albany Medical Center because we have insurance. However our insurance denied coverage so now we are waiting on a call for what the cost will be. The Gal I am working with at co...
by longman111
Thu Dec 02, 2010 12:10 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Post if CCSVI treatment did NOT work for you
Replies: 339
Views: 151837

Did you have stents also?
by longman111
Thu Oct 28, 2010 12:51 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointment dates for Albany Community Care
Replies: 263
Views: 49311

Re: Appointment Date

The breakdown percentages came from Doctor Mandato. I would hope that after 300 patients that their procedures would be consistent. If they are then what would the underlying difference be between the 3 group breakdown? That's the big question, isn't it? I'd say permanent nerve damage too, but then...
by longman111
Thu Oct 28, 2010 12:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointment dates for Albany Community Care
Replies: 263
Views: 49311

Re: Appointment Date

I wonder about that though, for permanent damage you'd expect that to be the progressive group, but if there's no discernible pattern then there are equally or near-equally good outcomes and bad outcomes in all groups. That only makes sense to me if they're not succeeding in treating all the stenose...
by longman111
Thu Oct 28, 2010 9:50 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointment dates for Albany Community Care
Replies: 263
Views: 49311

Appointment Date

My wife had her Doppler Ultrasound yesterday and tested positive for ccsvi. She is now scheduled on 12/17/2010 for the procedure. We are insured so treatment will be at the hospital. Our first call was June 28th. Found the staff and Doctor Mandato very professional and caring. Doctor Mandato clearly...
by longman111
Sat Oct 02, 2010 3:41 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI treatment available in the U.S.!
Replies: 859
Views: 160232

I am glad they have a program for follow ups as there is obvious concerns for restenosis. Please post back on how the procedure works for regardless of the outcome; I am finding very few people doing that which is a bit disconcerning. My wife goes for the mrv/consult on 10/27 in Albany. Albany updat...
by longman111
Thu Aug 26, 2010 12:10 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI treatment available in the U.S.!
Replies: 859
Views: 160232

Mrv issue

With Drury's negative results I wonder how many who went to Abany required an mrv and were negative for the stenosis. It will be awful for my wife, who is severely disabled from ms, to travel there in october and come up negative with what may be an inadequate test.
by longman111
Wed Aug 04, 2010 4:00 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI treatment available in the U.S.!
Replies: 859
Views: 160232

That is correct - testing and consultation only; not what we expected. From others in the forum I thought appointments would be for both testing and potential treatment. Maybe because we are only 3.5 hours away. Happy something is going forward as my wife is not doing well.
by longman111
Wed Aug 04, 2010 11:01 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI treatment available in the U.S.!
Replies: 859
Views: 160232

Appointment for mrv and consult

My wife called on 6/22 and today received an appointment for an mrv and then a consult with Doctor Mandato on 10/27. An appointment for the venogram/angioplasty will made after the test/consult.
by longman111
Tue Jul 13, 2010 1:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI treatment available in the U.S.!
Replies: 859
Views: 160232

Maybe this will help I called 6/22/2010 Received callback on 7/1/2010 asking for general info; name, dob, etc. Email received 7/13/2010 Will get a call from the doctor when it is my wifes turn to be scheduled. They are only scheduling out 4 months. After the doctor calls there is a final call settin...
by longman111
Thu Jul 01, 2010 2:10 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI treatment available in the U.S.!
Replies: 859
Views: 160232

Time frame for ccsvi response and scheduling

My wife has had ppms since 1995. Edss at around 7-7.5 I called Dr. Siskins office on 6/22 and received the first call back today. I was told it could be as much as 6 months for the next opening.