relapse 5 mos post liberation

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

relapse 5 mos post liberation

Postby Nasti » Thu Nov 04, 2010 8:19 am

Liberation procedure on June 3rd, post-op checkup om Sept 7, and relapse 3 days ago, optic neuritis...
November has been my ongoing relapse month in the past 3-4 years, though I thought I would break up the tradition this year...my bad...
I have had some improvements, especially in the energy, but symptomwise some are better and some are worse. I was in the middle of a relapse during the procedure, and my recovery wasn't accelerated by the procedure itself, so I am not as typical, if there is such thing.
So, what am I dealing with? Restenosis, failure procedure, no benefits by the 6 cm stent in my neck, depression or getting my peace with a terrible illness? Not quite sure yet...
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Postby blossom » Thu Nov 04, 2010 8:36 am

nasti, hate to hear this. this is so hard to deal with and one can't help but get depressed. we can all only hope they can get this all figured out "soon". hopefully you'll get back on track. hang in there.
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Postby Kathyj08 » Thu Nov 04, 2010 9:00 am

yes, hang in there!
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Postby LR1234 » Thu Nov 04, 2010 12:41 pm

Nasti, I have found heparin to be useful with my recovery (tinzaparin). Is there anyway you can get prescribed some injectables to help the blood flow?
Also take zinc, Vit C and Vit D and drink plenty of water (like 2 litres a day slowly throughout the day) these things plus a good diet seems to have broken my regular 3 month relapse cycle. (although I did have 2 days of what I think was mild relapse but then it resolved, whereas in the past it would have floored me for a couple of weeks. Oct/Nov and March/April changeovers I my relapse dates!)
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Postby L » Thu Nov 04, 2010 12:51 pm

I'm really sorry to hear this Nasti.

What are the symptoms of this relapse if you don't mind my asking, and was your azygous vein treated?
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Re: relapse 5 mos post liberation

Postby Cece » Thu Nov 04, 2010 2:38 pm

Nasti wrote:So, what am I dealing with? Restenosis, failure procedure, no benefits by the 6 cm stent in my neck, depression or getting my peace with a terrible illness? Not quite sure yet...

Hang in there, Nasti. How disappointing.

Here is all I can think of: You said you last had a doppler follow-up two months ago, are you anywhere close to a center than can do another one? Did you have anything that was untreatable (missing sinuses, that sort of thing) or that was not treated for being too small of a stenosis? Were problems with the valves near where the jugular joins the subclavian found, that's such a common place? Why do you think you relapse in November?
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Postby ClaireParry » Thu Nov 04, 2010 2:44 pm

Sorry to hear that Nasti - sending positive thoughts!!
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Re: relapse 5 mos post liberation

Postby PCakes » Thu Nov 04, 2010 3:04 pm

Nasti wrote:Liberation procedure on June 3rd, post-op checkup om Sept 7, and relapse 3 days ago, optic neuritis...
...


Nasti..i am so sorry to hear this..damn..:(

Is this a new symptom? or an exacerbation of an old one?

Please..be well.
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Re: relapse 5 mos post liberation

Postby malden » Thu Nov 04, 2010 3:11 pm

Nasti wrote:Liberation procedure on June 3rd, post-op checkup om Sept 7, and relapse 3 days ago, optic neuritis...
November has been my ongoing relapse month in the past 3-4 years, though I thought I would break up the tradition this year...my bad...
I have had some improvements, especially in the energy, but symptomwise some are better and some are worse. I was in the middle of a relapse during the procedure, and my recovery wasn't accelerated by the procedure itself, so I am not as typical, if there is such thing.
So, what am I dealing with? Restenosis, failure procedure, no benefits by the 6 cm stent in my neck, depression or getting my peace with a terrible illness? Not quite sure yet...

Nasti, first you must ask your "Liberation procedure" team or team leader "What are you dealing with" It's their responsibility. They did "Liberation procedure" on you, you paid for it, and if something goes wrong, they must deal with it. Unless you have a different contract (No obligation - no guarantie).
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Re: relapse 5 mos post liberation

Postby CCSVIhusband » Thu Nov 04, 2010 3:13 pm

Malden wrote:
Nasti wrote:Liberation procedure on June 3rd, post-op checkup om Sept 7, and relapse 3 days ago, optic neuritis...
November has been my ongoing relapse month in the past 3-4 years, though I thought I would break up the tradition this year...my bad...
I have had some improvements, especially in the energy, but symptomwise some are better and some are worse. I was in the middle of a relapse during the procedure, and my recovery wasn't accelerated by the procedure itself, so I am not as typical, if there is such thing.
So, what am I dealing with? Restenosis, failure procedure, no benefits by the 6 cm stent in my neck, depression or getting my peace with a terrible illness? Not quite sure yet...

Nasti, first you must ask your "Liberation procedure" team or team leader "What are you dealing with" It's their responsibility. They did "Liberation procedure" on you, you paid for it, and if something goes wrong, they must deal with it. Unless you have a different contract (No obligation - no guarantie).


Are you a doctor, or a lawyer to be giving that advice?
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Re: relapse 5 mos post liberation

Postby malden » Thu Nov 04, 2010 3:20 pm

CCSVIhusband wrote:
Malden wrote:
Nasti wrote:Liberation procedure on June 3rd, post-op checkup om Sept 7, and relapse 3 days ago, optic neuritis...
November has been my ongoing relapse month in the past 3-4 years, though I thought I would break up the tradition this year...my bad...
I have had some improvements, especially in the energy, but symptomwise some are better and some are worse. I was in the middle of a relapse during the procedure, and my recovery wasn't accelerated by the procedure itself, so I am not as typical, if there is such thing.
So, what am I dealing with? Restenosis, failure procedure, no benefits by the 6 cm stent in my neck, depression or getting my peace with a terrible illness? Not quite sure yet...

Nasti, first you must ask your "Liberation procedure" team or team leader "What are you dealing with" It's their responsibility. They did "Liberation procedure" on you, you paid for it, and if something goes wrong, they must deal with it. Unless you have a different contract (No obligation - no guarantie).


Are you a doctor, or a lawyer to be giving that advice?


No, I am not. Is just a common sence advice. If you buy a 10$ hair dryer it's common to you to confirm warranty, and for a 10.000$ procedure... no warranty?
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Postby blossom » Thu Nov 04, 2010 6:33 pm

while not agreeing with malden i do get his drift on the point. in a world where we could travel a few miles and get the procdure and the doctors were near by it certainly would be the ideal thing to get on the phone and explain our problem and the doctor tell us come on in and we'll try to get the problem resolved. but in the world right now it's not that easy for patient or doctor. i'm sure the good doctors want success and want to fix something that goes wrong. "if they don't shame on them" and probably we will come across that sometimes. but right now it's not so cut and dried for everyone.
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Postby dania » Fri Nov 05, 2010 9:30 am

I too restenosed both times after each procedure, the first was on June 23 and the second was on July 14. More people are coming forward stating this problem, it is all too common. At least we know it works as long as the veins stay open. It should be evident that the next step should be looking at ways to keep these veins open and blood flowing.
This procedue is in it's infancy. There is so much more to uncover.
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Postby Vhoenecke » Fri Nov 05, 2010 4:02 pm

Sadly, restenosis is an issue and with the procedure in the infancy stage we will have trouble. I do agree that the people doing the procedure should offer warantee work. I am not saying doing the procedure again for free but offering a reduced rate would make a lot of sense. All the best to you in your quest for wellness.

Val
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Postby Nasti » Sat Nov 06, 2010 2:55 am

Nasti, first you must ask your "Liberation procedure" team or team leader "What are you dealing with"

I sent an e-mail to the doc, no reply yet. Though, I don't really believe that he might tell me something I don't know, he hasn't so far. What ever he does, I am reasoning since the first time the relapse didn't get any better by the procedure, why should it this time?

Is this a new symptom? or an exacerbation of an old one?

It is definitely an exacerbation. I've had it in relapse for 10 years now. The scary thing is that the last 2 bouts of MS that I've had do not respond to the steroid treatment, and that's a trouble. Though I am not having nausea this time, this symptom can be pretty nasty, with vertigo and vomiting all the time, and since I do not get better by steroids, what's left?

Sorry to hear that Nasti - sending positive thoughts!!

Thank you for your positive thoughts, I am kind of lacking them right now. I replaced them with thorough cleaning of the kitchen till 2 am. I think I woke up my neighbours :)))

Here is all I can think of: You said you last had a doppler follow-up two months ago, are you anywhere close to a center than can do another one? Did you have anything that was untreatable (missing sinuses, that sort of thing) or that was not treated for being too small of a stenosis? Were problems with the valves near where the jugular joins the subclavian found, that's such a common place? Why do you think you relapse in November?


Actually, I am not far, but it takes crossing borders and going to another country. Last time we did that with our own car, burglars wanted to slit our throats in the mountains, so now transportation is kind of tricky. And I don't want to go through the same ordeal each time.
My right jug was like 0.2 mm wide at ear height, so it was stented, left and azygos just ballooned. I was doing great these past 5 mos, and this relapse had no reasons, definitely. Not all of them have, but this time I was actually consciously resting and taking it easy because I was to have a business trip on Nov 2nd. Like I brought my bad luck by being cautious. This came out of nowhere and devastated me. I had already started to hope for the better, I had overcome some of my worst fears by creating positive thinking environment, and now everything is back, every doubt, every worst scenario. And I went through that already this year when I had 2 failed angios, and this is actually too much, I think I am running out of defensive mechanisms for my sanity.

Thank you all for your support and understanding, if I didn't have that, I don't know what I'd do. Not much you can do, not much I can do nor anyone else, I just want to learn how people survive with this because it's been 10+ years, and I still can't get my peace of mind, I wonder if I ever will.
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