Post if CCSVI treatment did NOT work for you

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

Postby Daisy3 » Fri Aug 13, 2010 7:18 am

What have your doctors suggested that you do Dania?
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Postby dania » Fri Aug 13, 2010 7:49 am

Daisy3 wrote:What have your doctors suggested that you do Dania?

They are at a loss. Hopefully the saying "three's a charm is right" is right.
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Postby KDGO » Sat Aug 14, 2010 3:53 pm

In this sticky of the procedure NOT working for you....did anyone have stents and it NOT work for them?
Just curious as I read who has already posted hear many stuck with angio and no stents.
So it breaks down- NOT work with angio or NOT work with stents would help see a clearer picture...at least for me.
Thank you
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Postby dania » Sat Aug 14, 2010 4:55 pm

KDGO wrote:In this sticky of the procedure NOT working for you....did anyone have stents and it NOT work for them?
Just curious as I read who has already posted hear many stuck with angio and no stents.
So it breaks down- NOT work with angio or NOT work with stents would help see a clearer picture...at least for me.
Thank you

It did not work for me and I had 1 stent and the vein stenosed further past the stent as well I had blood clots in the stent. I have been on anticoagulants for 10 years.
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Postby mila77 » Mon Aug 16, 2010 3:24 pm

KDGO wrote:In this sticky of the procedure NOT working for you....did anyone have stents and it NOT work for them?
Just curious as I read who has already posted hear many stuck with angio and no stents.
So it breaks down- NOT work with angio or NOT work with stents would help see a clearer picture...at least for me.
Thank you


I had a stent in right IJV and it did not work for me. I developed thrombosis in the stent and I am much worse than before procedure. I will start blood thiningh meds tomorrow and maybe in a month they will try to reballon the stent. Right now it is too dnagerous because bloond clots could go to the heart and then to lungs.
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Postby KDGO » Mon Aug 16, 2010 4:08 pm

mila77 wrote:
KDGO wrote:In this sticky of the procedure NOT working for you....did anyone have stents and it NOT work for them?
Just curious as I read who has already posted hear many stuck with angio and no stents.
So it breaks down- NOT work with angio or NOT work with stents would help see a clearer picture...at least for me.
Thank you


I had a stent in right IJV and it did not work for me. I developed thrombosis in the stent and I am much worse than before procedure. I will start blood thiningh meds tomorrow and maybe in a month they will try to reballon the stent. Right now it is too dnagerous because bloond clots could go to the heart and then to lungs.


Mila
Were you sent home with a blood thinner? If so what dose which one? Perhaps you stenosed in other areas? Did you get angio in LIJV or have your azgous looked at? Did you enter the left to see if you have MayThurners? Since you are going back again they probably will double check all again. As I understand Joan Beal's husband also had thrombosis ...all cleared now and doing well.
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Postby mila77 » Mon Aug 16, 2010 4:29 pm

KDGO wrote:Mila
Were you sent home with a blood thinner? If so what dose which one? Perhaps you stenosed in other areas? Did you get angio in LIJV or have your azgous looked at? Did you enter the left to see if you have MayThurners? Since you are going back again they probably will double check all again. As I understand Joan Beal's husband also had thrombosis ...all cleared now and doing well.


KDGO

To answer all those questions I will redirect u to my plot.
But thanks for the info about Joan Beal's husband. It is good to know that someone else had clots and recovered from it.

And here is the link
http://www.thisisms.com/modules.php?nam ... 382#129382
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Postby KDGO » Mon Aug 16, 2010 6:41 pm

Thank you!
I'll read through it.
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Postby Daisy3 » Tue Aug 17, 2010 4:09 am

dania wrote:
Daisy3 wrote:What have your doctors suggested that you do Dania?

They are at a loss. Hopefully the saying "three's a charm is right" is right.


My best wishes to you..I look forward to some positive news from you:-)
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Postby manojag22 » Tue Aug 17, 2010 4:26 am

I was liberated on last wk of Feb, my right IJV was stented (60 * 10mm) just below the ear, for last two weeks I'm having weakness, stiffness in right hand from shoulder to palm.. Not sure what is causing this ?? is this be MS or due to stent, Anyone have any idea, pls advise.. (One of my MS friend mentioned that it co...uld be... due to acc nerve getting affected by size and location of stent).
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Postby ssmme » Fri Aug 20, 2010 7:00 am

I was treated on July 19th and felt a little better for a while but no real improvements. :-(
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Postby dania » Fri Aug 20, 2010 9:08 am

This problem with clotting seems to emerging with the number of people who have had the procedure. I too got blood clots and had a second procedure where they doctor cut up the clots and reopened all 3 veins. I have been on Coumadin (warfarin) for 10 years with no side effects. But when I developed blood clots in my neck I had pressure in my ears and stiffness in my neck. I believe I have, again, developed blood clots as the stiffness and pressure have returned.
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Postby KDGO » Fri Aug 20, 2010 11:25 am

dania wrote:This problem with clotting seems to emerging with the number of people who have had the procedure. I too got blood clots and had a second procedure where they doctor cut up the clots and reopened all 3 veins. I have been on Coumadin (warfarin) for 10 years with no side effects. But when I developed blood clots in my neck I had pressure in my ears and stiffness in my neck. I believe I have, again, developed blood clots as the stiffness and pressure have returned.


Dania
Thank you for posting with your experience.
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Postby japentz » Sat Aug 21, 2010 7:42 am

Hello all,
I've not had angioplasty yet, although doppler showed reflux in both jugular veins. I am awaiting my date. There are a lot of posts to this thread that are responses. I am interested in a real compare results thread.

I suggest a thread be made that mirrors the positive CCSVI Tracking project. It would be very helpful. It should be maintained like that thread with no other responses except results.

I am interested in the Good, the Bad, and the Ugly. It would be more helpful.


CCSVI TRACKING [Please use date format MM/DD/YYYY]

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: (M/F)
Age:
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
Lesion locations (most affected side, if known), number:
MS treatments:
MS symptoms before stenosis intervention:
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N)

Have you had testing (and possibly procedure) for blockage yet: (Y/N)
[Some patients may wish to start with a baseline report, if Y, continue with next section]

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure:
Type of venographic study: (MRV, Doppler)
Diagnosis:
Type of procedure:
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
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Postby pklittle » Sat Aug 21, 2010 12:39 pm

Hi everyone.  I haven't checked in here for a little while.  Well it has been over two months since my angioplasty and still no improvement to report. I'm one that never had improvements, not even for one day.   In fact, I am actually a bit worse... I am having more numbness in my legs than I ever had.  Also increased numbness in my left hand.  Walking and balance are more difficult to the point that some days I have resorted to using a walker around the house for safety. BURNING LEG PAIN. This decline has been the case for about two weeks now.
I'm not posting this for sympathy, but just wanted to share where I am at FYI.  
I was treated by Dr. Siskin on June 14, who as you all know has done many procedures by now.  I recently made him aware I am worse and he expressed he is sorry and that I am the first of his patients to report this.  I was shocked.    :(

Hey elliberato, pass that box of hohos!



  
Last edited by pklittle on Sun Aug 22, 2010 8:41 pm, edited 1 time in total.
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