No Valves Now? Causing Trouble?

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

No Valves Now? Causing Trouble?

Postby jennygirl » Thu Mar 17, 2011 2:05 pm

Hello! This is my first post...but been a long time reader.

Jan 5-2011 I had CCSVI procedure done by Dr. Arata down at Pacific Interventionalists which was a big success!!!! My years of leg spacitcy and pain has gone completely, my fatigue has gone, my tremors...gone. The only thing I would say has stuck around is the tingling in my feet and calfs. Which I have heard/read that seems to be common.

My question to anyone who can help me....I have had the valves removed and was told by Dr. Arata not to have my head bent down for long. Now, 2 months post procedure, the other day I was washing my hair at the side of the tub and had my head bent down under the tub for a couple minutes. When I stood up, my eyes felt pressure and fullness and had a pain behind them, much like pre-procedure. It has been about 5 days since I did that, and my head still feels "funny" and full and like I have been standing on my head. I also feel tired and just foggy. Each day does seem to get a little better.

But I am very curious if anyone else has experienced that? For those out there that have had their valves removed, what are your experiences with bending over. If any??

Also like I mentioned it has been just over 2 months and my neck/shoulders still seem to act up and cause aches once and awhile. Especially between the shoulders closer to my neck. Do any of you find that the case?

Thank you for any input as these are questions I can't seem to google to find an answer!


Jenny
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Postby Interrupted » Sat Mar 19, 2011 7:47 am

Bump.

Valves removed?? 8O

Can tell i've had a a break from following things :lol:
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby Jugular » Sat Mar 19, 2011 8:39 am

Hi Jenny. I was treated by Dr. Arata shortly before you. I think it's not so much valve removal as it is having them stretched permanently open. I guess the end result is the same.

So far I have had no ill effects bending down or what have you. I could use my inverter board to see what would happen but that would be rather foolhardy (which isn't the deterrent that it should be for the likes of me). I would think that if you did get a buildup of pressure that it should be quickly relieved by standing. Perhaps do a bit of cardio to get the blood flowing?

Anyway, I hope this disappears for you quickly and that you continue to improve.

Uhmmm ... keep your chin up I guess. :-)
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Re: No Valves Now? Causing Trouble?

Postby Liberation » Sat Mar 19, 2011 2:46 pm

jennygirl wrote:Hello! This is my first post...but been a long time reader.

Jan 5-2011 I had CCSVI procedure done by Dr. Arata down at Pacific Interventionalists which was a big success!!!! My years of leg spacitcy and pain has gone completely, my fatigue has gone, my tremors...gone. The only thing I would say has stuck around is the tingling in my feet and calfs. Which I have heard/read that seems to be common.

My question to anyone who can help me....I have had the valves removed and was told by Dr. Arata not to have my head bent down for long. Now, 2 months post procedure, the other day I was washing my hair at the side of the tub and had my head bent down under the tub for a couple minutes. When I stood up, my eyes felt pressure and fullness and had a pain behind them, much like pre-procedure. It has been about 5 days since I did that, and my head still feels "funny" and full and like I have been standing on my head. I also feel tired and just foggy. Each day does seem to get a little better.

But I am very curious if anyone else has experienced that? For those out there that have had their valves removed, what are your experiences with bending over. If any??

Also like I mentioned it has been just over 2 months and my neck/shoulders still seem to act up and cause aches once and awhile. Especially between the shoulders closer to my neck. Do any of you find that the case?

Thank you for any input as these are questions I can't seem to google to find an answer!


Jenny


Hi Jenny, I hope this is only a temporary thing. When I talked to dr Sinan, he told me that breathing does not let any reflux happen even if your valves are open. Allegedly, 15% of the people have no valves. Dr Arata is using his technique.
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Postby L » Sat Mar 19, 2011 4:30 pm

Hiya. It seems to make sense that it would take your body a little while to get used to the new state of affairs? Perhaps this sort of thing won't occur in six months time..

I've had no experiences like this mind you (I had a valvotomy on the left jugular).

Lovely to hear about your improvements though. But let us know how you are feeling in a few days time.
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Postby hannakat » Sat Mar 19, 2011 7:28 pm

Hi Jennygirl.

This might be a very good question for Dr. Sclafani's question thread.

Have you called Dr. Arata's office. This does seem like something worth discussing with them.

Hope you find something out soon!
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Postby jennygirl » Mon Mar 21, 2011 4:26 pm

Thank you everyone for your responses! I did get better after a couple more days, and did some cardio too...but I must say it is still happening. Even if I spend a big day cleaning, and have to pick up a lot of toys and my head is bending over all day, or I have to bend over to do something on the ground for a long time, like look for my sons missing shoe in the shoe closet for a long time... I seem to get that same feeling all over again. I have no idea what it means, but I am hoping that maybe it is just too early and maybe it is still trying to "work things out", my head that is. Who knows!?

I did tell Dr. Arata in one of my post emails, but I don't get responses back from those, so I figured it wasn't too worrisome.

Oh and I am sorry, it wasn't "destroyed" valves but torn valves! Sorry for the mixup.

Thank you for any responses, and I would love to hear any other thoughts and suggestions![/quote]
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Postby Billmeik » Mon Mar 21, 2011 4:53 pm

Im just trying to convince myself to get the valve otomy. In poland last year they found bad stenosis at the valve on one side.After ballooning twice it closed back up on the table,so they asked to put in a stent across the valve. This would effectively make the valve destroyed too. I said no.
Now I want to follow Bill Code's advice and go see arata.

what i would like is a stent with a mechanical valve. Dunno,it just seems like those valves need to be there for a reason.

I might just go for it. Sounds like it works great on the ms.
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Postby Lyon » Mon Mar 21, 2011 5:06 pm

..
Last edited by Lyon on Fri Jun 24, 2011 6:51 pm, edited 1 time in total.
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Postby CCSVIhusband » Mon Mar 21, 2011 5:08 pm

Gray's anatomy states that 15% of all people do not have valves in their jugular veins ...

for what it's worth.



We don't know all the medical conditions of those 15% of people ... just that they didn't have them when anatomy was being studied ...



Lyon actually has an interesting thought above ... though neck veins still scare me to have a stent in, considering unless you're in a halo, you move your neck quite a bit (awake and sleeping).
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Postby patientx » Mon Mar 21, 2011 6:27 pm

jennygirl wrote:I did tell Dr. Arata in one of my post emails, but I don't get responses back from those, so I figured it wasn't too worrisome.

Jenny,

I was wondering: do you mean that because Dr. Arata did not respond to your email question, the assumption is that what you were asking is of no concern?
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Postby Music » Mon Mar 21, 2011 7:22 pm

Jenny,

Please keep trying Dr. Arata - e-mails and phoning - I think(??) he is on holidays right now. I e-mailed him in Feb and got a response from him within minutes and a phone call from him an hour later. He is a very caring guy. We all will have different outcomes. Had my surgery 7 months ago and have developed a bit of vertigo recently?? Still have burning/itchy feeling where my valves were done??

Take care.

On a side note:
I thought I read somewhere here on this forum that "a lot" of people have abnormal valves - with and without MS?? Told this to the tech that did my follow-up Doppler here and she said "absolutely not"! My husband and I were not impressed with this tech's lack of knowledge when she did my ultrasound. Dr. Arata said the report was not very useful either.
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Postby jennygirl » Mon Mar 21, 2011 7:37 pm

I am not sure what I would say to him. When we were down there and he was explaining to us to stay away from "going upside down" we kind of joked about it. But then he said it will come up when doing yoga etc. and that I needed to stay away from positions that allowed my head to drop down for periods of time. I didn't think anything of it, but I am finding that I get an instant fullness and pain behind my eyes.

I think Dr. Arata is extremely caring and wonderful.... and extremely busy too! As he told me NOT to do such things....and I did, I am not sure letting him know is going to really bring much more out of it then. "Well I TOLD you NOT too!" I just thought I would check if anyone else was experiencing the same effect. I am a little more worried now then before that more people don't have this problem at all and are shocked I do.

:(
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Postby Cece » Mon Mar 21, 2011 7:44 pm

It's hard to say, I was cautious about bending or putting my head upside down before the procedure too. In a week I'll be going to my first yoga class since my procedure, I'll post if I notice anything....

If it hurts, don't do it. ;)
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Postby jennygirl » Mon Mar 21, 2011 7:47 pm

Yes...my husband's favorite saying

Stupid Should Hurt.

:roll:
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