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PostPosted: Wed Oct 20, 2010 8:27 am
by dania
There are many, many stories and videos of those that have a positive outcome of treatment. I too had positive results but they only lasted a week then I got much worse. Those of us that got a negative outcome are not as likely to post what has happened to them. When I had the procedure done in June there was nobody that had reported getting worse. Some reported no change, but not getting worse so I did not think that was a possibility.
I do believe if the veins are opened and REMAIN open MS patients will get better.
So it is in our best interest that the doctors are aware of what can happen and address the problem.

PostPosted: Wed Oct 20, 2010 8:28 am
by scorpion
LongTimeLurker wrote:And here is a story of one person who had the liberation procedure early and had fantastic results ... (if we're going to be fair and give equal time to both sides of the coin) ...

From the tracking thread ...


tonisa
Newbie



Joined: Oct 17, 2010
Posts: 1

Posted: Sun Oct 17, 2010 3:18 pm Post subject:
CCSVI TRACKING [Please use date format MM/DD/YYYY]

MS HISTORY
Name (if want to give other than TIMS login name): Tony
Male/Female: M
Age: 28
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 08/15/2010, not sure of type
Lesion locations (most affected side, if known), number: C spine, 2 lesions
MS treatments: none
MS symptoms before stenosis intervention: Numbing of legs from belly button down when walking. Prevented anything more than a slow walk. Inadequate bladder drainage, frequent urination, MS hug when stressed, leg muscles cramping and leg pain(4 out of 10), extremely low energy, Cog fog,

Are you using Inclined Bed Therapy I.B.T? No

Have you had testing (and possibly procedure) for blockage yet: Yes

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 10/12/2010, Arizona Heart Institute, Phoenix Arizona.
Type of venographic study: (MRV, Doppler) CT scan, Doppler, cath venogram
Diagnosis: Severe stenosis on left IJV, faulty valve in right IJV, Azygos was open.
Type of procedure: Balloon angioplasty, 12 MM balloon.
Procedure/drug related symptoms: None
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: None
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
(10/16/2010)Numbness and tingling reduced by 80%, Bladder working better, Energy is back to normal, cog fog is GONE, Leg pain is gone, ms hug is gone, Feel extremely well, I have my life back. I had only been diagnosed for 2 months when I had my procedure. My symptoms had started approx 1 year prior. I now feel like overall I am 80-90% back to normal.
(10/19/2010) Noticing that I can think a lot clearer, eyesight in sharper, I feel like I can follow conversations a lot better. I have a lot better stamina. I have been cycling on a stationary bike before my procedure to try to stay in shape. 3 days before procedure, with bike resistance set at level 5, My heart rate would hit 180-185 after 5 minutes of cycling at 85 rpm. After the procedure on got on the same bike, level 5, same heart rate monitor, and cycled at 100-105 rpm for 17 minutes before my heart rate hit 180. I had a full sweat going on, which was very difficult for me to do before. I didn't have plugged ears when I was done, which I thought was normal for working out:) Every day it seams that I feel better. Tons of energy.
I WOULD STRONGLY RECOMMEND THIS TO EARLY DIAGNOSED PATIENTS, AS I THINK EARLY INTERVENTION IS KEY. IT WORKED FOR ME!!!
Last edited by tonisa on Wed Oct 20, 2010 1:23 am; edited 1 time in total


I guess my thought, with all these diffrent results, is how important a controlled clinical study would be in order to gather objective data. I think Lyon has said before that with MS long term outcomes are the key. In many of us the natural course of MS is that different symptoms come and go. I often wonder, when I hear people state that their symtoms had decreased or disappeared whether it is the treatment they are receiving(not just CCSVI) or if it is just the natural course of their MS. What a complicated disease!

PostPosted: Wed Oct 20, 2010 8:41 am
by vivavie
LongtimeL:there are plenty of treads concerning the positive outcomes of the procedure. It is bad taste to add it here!

I still believe in the treatment but people should be aware of the possibility of negative outcome.

I had plan for 1 procedure, maybe 2 if restenosis but I was not prepared for FOUR just to repare problems from the 1st one!

I may even have another problem: Thursday when I raised my head after a Lovenox injection I had a very sharp pain just where my stents are. I have them for 5 weeks now without even feeling it. This pain changed in soreness for a few days but now I have to wonder is my stent is damaged? Not easy to get a Doppler in Canada; need a Dr request than be on the wait list and than it may be too late to do something!

PostPosted: Wed Oct 20, 2010 8:54 am
by Blaze
Vivavie: I know how many problems you have had and I am alarmed to hear you are now having more.

Check out having a Doppler with Angie in Dr. McDonald's office in Barrie. I will send you a pm with more information.

Hang in there!

PostPosted: Wed Oct 20, 2010 9:01 am
by dunkempt
Vivavie -
I had follow-up doppler at Barrie Vascular Imaging without a doctor referral. I have also had occasional sharp pains in stent area, but things seem to be fine (7 months in).
-d

PostPosted: Wed Oct 20, 2010 9:01 am
by dania
vivavie wrote:LongtimeL:there are plenty of treads concerning the positive outcomes of the procedure. It is bad taste to add it here!

I still believe in the treatment but people should be aware of the possibility of negative outcome.

I had plan for 1 procedure, maybe 2 if restenosis but I was not prepared for FOUR just to repare problems from the 1st one!

I may even have another problem: Thursday when I raised my head after a Lovenox injection I had a very sharp pain just where my stents are. I have them for 5 weeks now without even feeling it. This pain changed in soreness for a few days but now I have to wonder is my stent is damaged? Not easy to get a Doppler in Canada; need a Dr request than be on the wait list and than it may be too late to do something!

Thank you for the support.
I too am having pain where my stent is. My neck is so stiff and one can see the muscles are alll contracted and bulging. I would just like to be in the same shape I was in before I had any of the procedures.