Post if CCSVI treatment did NOT work for you

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

Postby pklittle » Fri Aug 27, 2010 6:09 pm

My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized.

*UPDATE*
8/27/2010

Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a thorough job using venogram to check my lower veins for MT and also the IJR, vena cava, illiac (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got me.
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Postby newlywed4ever » Fri Aug 27, 2010 6:17 pm

pklittle wrote:My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized.

*UPDATE*
8/27/2010

Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a thorough job using venogram to check my lower veins for MT and also the IJR, vena cava, illiac (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got me.


So sorry to hear this and so sorry for you. If you haven't already, I would suggest posting this on Dr Sclafani Answers ??s thread and maybe sending a copy of your DVD. Thank you for being a pioneer and sharing.
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Logic

Postby leooreo » Tue Aug 31, 2010 2:23 pm

Sorry some of you did not have WOW improvements - Do you know how many lesions are in your brain and spinal cord?? I do - Look at your MRI and ask yourselves - How long did these lesions take to develop? 1 day, week, year, years. That is the reason you and disfuntional to begin with. Proper blood flow is essential, but to think that damage should disappear just like that - well... I would feel great knowing my blood is now leaving my brain and hence putting a halt too iron deposits, hence free radicals. ( more lesions??).

How did you feel knowing you had twisted vessels, malformation, stenosis in general?

There is always drug therapies that don't improve blood flow. GET A COPY of ThE "CARDIO VASCULAR CURE". (dr. Cooke) LEARN TO HEal your vessels now that you have cleared out the drains. NO JUNK FOODS OF ANY KIND.

Good luck
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Re: Logic

Postby dania » Wed Sep 01, 2010 10:37 am

[quote="leooreo"]Sorry some of you did not have WOW improvements - Do you know how many lesions are in your brain and spinal cord?? I do - Look at your MRI and ask yourselves - How long did these lesions take to develop? 1 day, week, year, years. That is the reason you and disfuntional to begin with. Proper blood flow is essential, but to think that damage should disappear just like that - well... I would feel great knowing my blood is now leaving my brain and hence putting a halt too iron deposits, hence free radicals. ( more lesions??).

How did you feel knowing you had twisted vessels, malformation, stenosis in general?

There is always drug therapies that don't improve blood flow. GET A COPY of ThE "CARDIO VASCULAR CURE". (dr. Cooke) LEARN TO HEal your vessels now that you have cleared out the drains. NO JUNK FOODS OF ANY KIND.


I had some amazing improvements, but they only lasted 1 week. I had restenosed in all 3 veins, plus had developed blood clots in the stent. And that vein had stenosed just past the stent. With some people, their veins close up immediately. If this happens it is no wonder these people do not improve.
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Postby ozarkcanoer » Thu Sep 02, 2010 8:02 am

Hi all, I thought that it is about time I put my 2 cents word in on this thread. It has been over two weeks since I had the procedure by Dr H at Baltimore. I couldn't have picked a nicer, more caring doctor and I believe that I had top notch care. I have two stents hiigh up by my ears in both my right IJV and my left IJV. He almost put a stent in my azygous because of a twist he found but he decided not to push the envelop, so I can see there is an anomaly in my azygous. All veins were also ballooned.

I have double vision (I don't really care), fatigue (boy do I care), and daily severe chronic pain in my head and neck (help!!!!!!!). I have not noticed any change in any of these symptoms since the procedure. So I have MS and I have CCSVI but the procedure has not seemed to help any of my symptoms. So I guess I just go back to my neuro and continue with one or more of the many pain management pharmaceuticals. So far, except for Vicodin, nothing at all has helped. I hate taking Vicodin and then feel like a zombie and a drug addict.

This doesn't mean I have given up on CCSVI. I am still following the story. I want so much for this to be true for all my friends with MS.

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Postby hoodyup » Thu Sep 02, 2010 12:11 pm

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Postby pklittle » Thu Sep 02, 2010 1:40 pm

hoodyup wrote:See my other thread here:

http://www.thisisms.com/ftopicp-131983.html#131983

andrew


Andrew,

Thank you for sharing your wife's dilemna. I feel like I'm in the same boat, as I am definitely worse too and don't know where to turn. I guess I am going to go see my neurologist as a next step. Thank goodness I didn't burn my bridges as some have with their neuros when ccsvi came up.
Please know that you and your wife are not alone. My wonderful husband is there for me, as you are for your wife. You are appreciated. I snap at my husband too, and hate when I do that. I wish there were answers or recommendations for those of us that are caught in this situation.

Pam
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Define worse, please

Postby Rosegirl » Sat Sep 04, 2010 4:34 am

I'm so sorry that there has been no magic cure for some of you.

If you would be so kind - when you say that you are worse, could you be more specific? Worse than before you had the procedure? Or did it help temporarily and then stop working? If you saw temporary improvements and then got worse, was it worse than before you had the procedure?

I was treated in July and saw no results, good or bad, other than my feet aren't purple any more. I'm considering having another, but I've gotten quite scared by the comments of folks who are "worse".

Being more specific about what and when things got worse will be most appreciated.
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Re: Define worse, please

Postby pklittle » Sun Sep 05, 2010 9:21 am

Rosegirl wrote:I'm so sorry that there has been no magic cure for some of you.

If you would be so kind - when you say that you are worse, could you be more specific? Worse than before you had the procedure? Or did it help temporarily and then stop working? If you saw temporary improvements and then got worse, was it worse than before you had the procedure?

I was treated in July and saw no results, good or bad, other than my feet aren't purple any more. I'm considering having another, but I've gotten quite scared by the comments of folks who are "worse".

Being more specific about what and when things got worse will be most appreciated.


I am worse than before the procedure. At first I was the same for over a month. Now worse leg pain, worse leg numbness, poorer balance. I did not realize even temporary improvements.

As to your first statement, I wasn't expecting a miracle cure.
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ccsvi

Postby blossom » Wed Sep 08, 2010 7:18 pm

sept. 3 was a month since procedure. my left leg was numb immediately and has not improved. i did feel some very slight improvements for about 10 days but they faded and i am actually feeling weaker than before procedure. being ppms i was aware of odds but a numb leg and worse was not my expection. so plan b ?????
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Postby smokey » Thu Sep 09, 2010 3:01 am

I had the first angioplasty in May. Lots of improvements - vision, fatigue, and balance. 2 weeks later my vision deteriorated. Fatigue returned. I had a 2nd venogram recently, but my left jugular has a thrombus, and part of the jugular appeared to have 'disappeared'. Just a stump of the ILJ behind my ear and then ++ collaterals - then the rest of the ILJ lower. Maybe I had a collateral ballooned the first time all along? Not sure. So the IR couldn't re-balloon. I was very disappointed, but hopeful that there might be some creative way around it all. Some of us can be ballooned with no improvement. Some of us have improvements and can't be reballooned (maybe).
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CCSVI and categories of MS

Postby jbro » Thu Sep 09, 2010 2:02 pm

I think it will be helpful to keep track of how different categories of MS are responding to CCSVI treatment. I have primary progressive MS, which seems to resist most treatments.

I know this is a lot to ask, but can everybody who has experienced success with CCSVI indicate which type of MS you have?

Success or failure in these treatments could be due to the type of MS, or it could be due to the degree or difficulty of the stenosis.

Take care, John
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Postby Cece » Thu Sep 09, 2010 5:39 pm

jbro, this is not a thread about ccsvi successes...the info you're describing is in the tracking thread or why not start a new thread asking for this. I agree: type of MS, duration of MS symptoms, edss levels, location and quantity and type of stenoses all may play a role in how people respond to treatment....
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Re: CCSVI Tracking thread

Postby NHE » Thu Sep 09, 2010 7:45 pm

Just to reiterate what I've written elsewhere, the tracking thread is for anyone that has had either testing and/or treatment for CCSVI good results or bad.

NHE
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Postby jbro » Fri Sep 10, 2010 6:11 am

Thank you both. I will follow your guidance.
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