The Possible Negative Outcome Of Treatment

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

Postby 1eye » Fri Oct 15, 2010 3:52 pm

It is true, 50% restenosis rate. Wonder if he did a 2-month follow-up? I aim to be one of the other 50% but time will tell. Dr. Zamboni retreated some didn't he?

I bet cardio doctors have already been through this mill. Porcine veins will be fine, thank you, if I need them. But I might reject them. More meds?
Last edited by 1eye on Fri Oct 15, 2010 3:54 pm, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby Cece » Fri Oct 15, 2010 3:53 pm

At the very least the doctors will need to be aware of these disorders and adjust the anticoagulation or monitor very closely post-procedure anyone with Factor V Laiden or Protein C Deficiency. It might also be cause for more caution during the procedure, less stretching so as do less damage, no stents, that sort of thing. I hope they learn from your case but I wish they'd known it before you went in. Sorry to hear that a venous graft from the leg is not the solution either. :(
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Postby smokey » Fri Oct 15, 2010 4:53 pm

Hi Dania, Really really sorry to hear what's happened. I guess we are in the unfortunate minority of people who go on to develop thrombus and/or our veins collapse. I had 2 stenosis in the left IJV high up. Good response to the first angioplasty. The effects lasted about 2 weeks. With the second angioplasty it was found that I have a thrombus and the entrance to the left IJV - the vein is occluded...and the left IJV now appears to have a discontinuation. Hmm. Hope these difficult presentations can be resolved at some stage. I didnt have stents or take anti coagulants. Smokey.
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Postby David1949 » Fri Oct 15, 2010 6:27 pm

Smokey may I ask if you have any history of blood clots, embolisms, or Factor V Laiden and Protein C deficiency?
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Postby smokey » Sat Oct 16, 2010 4:09 am

David1949 wrote:Smokey may I ask if you have any history of blood clots, embolisms, or Factor V Laiden and Protein C deficiency?


Hi David....no, none of these. I've been pretty healthy, well, as far as I knew, until the MS diagnosis. Smokey.
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Postby dania » Sat Oct 16, 2010 6:00 am

I would just like point out a few facts. Yes, I did get blood clots in the stent. I am prone to producing blood clots but that does not answer why all 3 veins restenosed. There are many others that got blood clots in their stent and some developed clots in the vein where there was no stent. Some restenosed but never developed clots.
The big question what is causing the veins to restenose?
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Postby David1949 » Sat Oct 16, 2010 8:56 am

Bear in mind that I'm not a doctor so this is just my non-professional opinion.
The blood clotting problem you have is a factor in the case of the blocked stent but probably not in the case of the restenoses. Prudence might suggest that patients with a history of blood clots are not good candidates for angioplasty or at least not for stenting.

The restenosis is a different problem. We all know that's a common problem for people who have been liberated. Although your veins seem to be especially obstinate. After ballooning they closed up even tighter than they were before. And each attempt to open them makes them close up tighter yet. That's why I think your case deserves study by experts. If they can determine why your veins are so hell-bent on closing up maybe they can figure out how to prevent it. That would be a huge benefit to you and everyone else who has been, or will be liberated.
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Postby fogdweller » Sat Oct 16, 2010 10:14 am

I was treated, angioplasty only, on Sept. 27, 2010. I had some immediate improvements, to my surprise. I have had PPMS for 35 years and though all damage was permanent and not subject to improvement.

However those effects faded fast and I have achy painful legs worse than I did before the angioplasty. I also take much longer to recouperate when I overuse my legs and wear them out.

This could well be because there is some elastic recoil, but ilt is interesting that it might be a more severe than the original stenosis. I am in the process of trying to get a local doctor to do follow-up.
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Postby dania » Sat Oct 16, 2010 10:26 am

David1949 wrote:Bear in mind that I'm not a doctor so this is just my non-professional opinion.
The blood clotting problem you have is a factor in the case of the blocked stent but probably not in the case of the restenoses. Prudence might suggest that patients with a history of blood clots are not good candidates for angioplasty or at least not for stenting.

The restenosis is a different problem. We all know that's a common problem for people who have been liberated. Although your veins seem to be especially obstinate. After ballooning they closed up even tighter than they were before. And each attempt to open them makes them close up tighter yet. That's why I think your case deserves study by experts. If they can determine why your veins are so hell-bent on closing up maybe they can figure out how to prevent it. That would be a huge benefit to you and everyone else who has been, or will be liberated.

David, I will agree with you that stenting is not a good idea for me or probably for many people. But there are other like me whose veins have closed up more than they were originally. Some people their vein have disappeared like Smokey. I do not think I am a rare case. It would be a good idea if others whose outcome from treatment was similar to mine came forward and made it public knowledge.
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Postby drsclafani » Sat Oct 16, 2010 7:47 pm

ikulo wrote:Dania thanks for sharing.

I'm no doctor, but I'm really surprised that testing for Protein C deficiency and Factor V Leiden testing isn't mandatory before venous ballooning and especially stenting. They are disorders that cause venous blood clots! Seems like a no brainer.

Here is more information about Factor V Laiden and Protein C deficiency: http://www.med.illinois.edu/hematology/PtProtC.htm
http://www.med.illinois.edu/hematology/PtFacV2.htm


i think that a history of excessive clotting or clotting for no reasons are good indications for a hematological workup. I do not think that universal testing would be helpful or cost effective.

I asked the question of Dania because i suspected a protein deficiency hypercoagulability from the history.

i would have been reluctant to put a stent in someone with this condition
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Postby drsclafani » Sat Oct 16, 2010 7:48 pm

smokey wrote:Hi Dania, Really really sorry to hear what's happened. I guess we are in the unfortunate minority of people who go on to develop thrombus and/or our veins collapse. I had 2 stenosis in the left IJV high up. Good response to the first angioplasty. The effects lasted about 2 weeks. With the second angioplasty it was found that I have a thrombus and the entrance to the left IJV - the vein is occluded...and the left IJV now appears to have a discontinuation. Hmm. Hope these difficult presentations can be resolved at some stage. I didnt have stents or take anti coagulants. Smokey.


the only published paper recommends three weeks of anticoagulants
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Postby drsclafani » Sat Oct 16, 2010 7:51 pm

dania wrote:I would just like point out a few facts. Yes, I did get blood clots in the stent. I am prone to producing blood clots but that does not answer why all 3 veins restenosed. There are many others that got blood clots in their stent and some developed clots in the vein where there was no stent. Some restenosed but never developed clots.
The big question what is causing the veins to restenose?


restensosis occurs because of intimal hyper plasia or overgrowth in the lining layer of the vein, or because the elastic recoil of the vein is not completely overcome or because the valves fused again

it seems that multiple treatments might be necessary. and that more aggressive dilatation could be valuable.

Surveillance after treatment is important
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Postby vivavie » Sun Oct 17, 2010 8:58 am

After my procedure in Aug I knew after just a few days that something was very wrong. My IR did not believe me but he indulge my request to have another venogram after only 3 weeks. Pain and fatigue were incredible I was degrading rapidely. The 2nd venogram showed that my LIJ had colapsed to 2mm and a collateral system was developping. He installed 3 stents over a previous stent from Poland and put me on Coumadin/Lovenox. The day after I had a thrombosis and a 3th veno to clear it but the blood continued to use the collaterals.
I was in horrible pain for 3 weeks, it is still not as before the procedure in Aug but a bit better.
This Tuesday after 1 month a Doppler showed that finally the blood goes through the stents. For the RIJ it is another story... to be continue

I write all this because if that had happen after my 1st procedure in Poland I would now be in the same position you are now. My new IR is 7 hrs away but I consider that "local". After my stent blocked it took me 2 months to find someone to open it! It was frustating have IR tell me directly that if nothing is done it could be too late but they were too busy to do it!$?&?%**?%??

The 2nd reason I write this is we have to trust our IR they are the Masterchef but THEY also have to trust how we feel and sometimes it is enraging because most of our symptoms are invisible!!! They can NOT be measure. If he had waited the prescribe "3months" between procedure it would have been too late for me too!

Dania, I am very very sorry. I know that to keep fighting requires energy you don't have. I am on that thin line... Maybe you should get another opinion. You already did a lot and you are the only one that knows if that's it.
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Postby dania » Wed Oct 20, 2010 7:42 am

Here is another that had a negative outcome .

Posted: Wed Oct 20, 2010 8:01 am Post subject: Think Twice if you have mild MS

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I would like to advise everyone planning on getting liberation treatment to please think it through well. If you are in the advanced stages of MS I would do it, but if you are like me, with minimal symptoms and trying to 'get things fixed early', I would advise caution.


Since returning from another country (I don't want to name the country because they did everything right) and liberation treatment, I have not been back to work....of course I only had the procedure last Thursday with three other individuals from Canada (who all had good results), but I am unable to funtion as I was before. I have been in bed since I returned. I feel we were well taken care of and the procedure was done professionally by great doctors, but you never know what will happen afterwards....I was fine for two days until I got home and I am assuming that my jugulars have re-blocked. Now I regret my rush in getting the procedure done knowing full well there would be no help available in Canada. I do not know where to turn now. I cannot afford another trip to a foreign country for more treatment and right now I am not able to work, which I had no trouble doing before. I thought I was doing the smart thing by getting treatment early, but myself and my husband are regretting that decision.....now I am not sure what the future holds for me at all and I am at a very low point in my life. I cannot keep my eyes open as I type this .
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Postby LongTimeLurker » Wed Oct 20, 2010 8:06 am

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 ...


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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
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