NO improvements after procedure

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

NO improvements after procedure

Postby Becia » Sun Jun 27, 2010 2:52 am

Hi everyone,
I would like to ask who does not have improvements after the procedure.
I had stent implantation into left jugular vein 8 weeks ago. My symptoms have not changed.
I am disappointed and trying give more time for myself, but my doctor said usually improvement is straight after procedure.


Is anyone with no improvement?

take care
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Postby sunlounger » Sun Jun 27, 2010 3:48 am

Hi becia :D

I am the same no improvements :(
Sadly it seems this is the case for many,

http://www.thisisms.com/ftopict-12342.html

Hope things change for the better soon :D
You might find that you’re not lost
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Postby pklittle » Sun Jun 27, 2010 3:49 am

Hi. Sorry to hear about your lack of benefits. I am in the same boat with you so far ( I did not have any stents though). no changes. I started a thread like yours also a couple of weeks ago.

http://www.thisisms.com/ftopict-12342.html
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Postby BadCopy » Sun Jun 27, 2010 6:29 am

hopefully in time. I think most doctors actually say to give it 3-6 MONTHS to see any change, if there will be change. I am also prtetty sure most say that a slowing or stop of progression is the biggest expectation anyone having the treatment should expect.
Have things stopped progressing?
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Postby mila77 » Sun Jun 27, 2010 8:45 am

Welcome to the club.

No benefits from the procedure for me as well. Actually, before it I was 100% fine, no fatigue, no bladder problems, running, jumping and dancing. I just wanted this procedure in order to stop potential progression of the desease in the future.
2 months after liberation I have numb right side of the body and real trouble walking, which never happened to me before during my 13 years with MS. I have not restenosed so I dont know what to think about it.

In 2 days I will have an appointment with my neure who I didnt see for a year and I have no idea how to tell her that I have a stent in my RIJV and it didnt work out for me. Well she will have a winnng card in the fight against CCSVI
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Postby ikulo » Sun Jun 27, 2010 9:13 am

Has Dr. Zamboni or other pioneers of CCSVI research ever addressed the potential for getting worse after a procedure?
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Postby Interrupted » Sun Jun 27, 2010 9:51 am

I think threads like this are so important because when something that seems like a winning ticket comes along it's very easy to read all the positives and blur over the negatives or lack of change.

We all hope we're going to be one of those that instantly starts improving (even if it's very gradual) but the reality when doing something new like this is that none of us have a clue what will happen, this could include worsening or just simply... nothing.

Thank you for sharing your experience because it helps us all see all sides, and please keep us up to date. I genuinely hope things do pick up for you x
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Postby Cece » Sun Jun 27, 2010 9:56 am

There is a new CCSVI facebook group for people who are slow to experience improvements after venoplasty, it's called: POST- CCSVI PROCEDURE -SLOWER RECOVERY Support and discussionGROUP
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mila77 » Sun Jun 27, 2010 10:46 am

Thnax a lot Cece
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Postby Rici » Sun Jun 27, 2010 11:45 am

Hi
According to the theory of Dr. Schelling it is not only important to remove the deformation of the vein. Alignment of internal pressure in veins is equally as important. Sinus rectus and Dovson finger. Without the regeneration of valves in the jugular vein equalization of pressure will not be effective.
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Postby Interrupted » Sun Jun 27, 2010 12:14 pm

Rici wrote:Hi
Without the regeneration of valves in the jugular vein...


Can valves regenerate?
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Postby Cece » Sun Jun 27, 2010 12:23 pm

Interrupted wrote:
Rici wrote:Hi
Without the regeneration of valves in the jugular vein...


Can valves regenerate?

Not regenerate, but theoretically a valve could be transplanted in.

Valves that are ballooned can pop back out, through elastic recoil.

They could also probably thicken due to hyperplasia regrowth?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Rici » Sun Jun 27, 2010 1:01 pm

Interrupted wrote:
Rici wrote:Hi
Without the regeneration of valves in the jugular vein...


Can valves regenerate?

I have this operation in August
Regards
Rici
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Postby Rici » Mon Jun 28, 2010 6:52 am

mila77 wrote:Thnax a lot Cece

Hi
I sent you PM
Greetings
Rici
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Postby frodo » Mon Jun 28, 2010 7:24 am

mila77 wrote:In 2 days I will have an appointment with my neure who I didnt see for a year and I have no idea how to tell her that I have a stent in my RIJV and it didnt work out for me. Well she will have a winnng card in the fight against CCSVI


She doesn't hav a winning card. If you feel worse that means that blood flow can reallly modify the course of MS. Your case is an additional proof that everything is true. Unfortunately we still do not know enough.
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