Villagemaid back again in the forum

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

Villagemaid back again in the forum

Postby Villagemaid » Sat Jan 29, 2011 9:54 am

Hello everyone (new friends and old friends)...

I must say first off, that I took some time off of anything ccsvi and ms related after getting the procedure done in Bulgaria in September. I felt like a million bucks and there was NO multiple sclerosis in me at all.....I really felt 'normal' again for the first time in ten years. I have RRMS and altho I was still fully mobile and had the "you don't look like you have MS" body, it was really starting to affect me with pain and fatigue and brain fog. At the time of the procedure I felt like an old dog that wanted to go into the forest, find a patch of grass to lay on and die.

Then the procedure happened and it was amazing. My nerve pain in my legs was gone, my brain fog was gone, my spastic legs were not spastic anymore, I was sleeping great, and I really felt ten years younger rather than fifty years older. I finally had the drive and energy and zest to feel like the world was my oyster and I was the pearl that was going to dazzle the world.

And now, I know, that the veins have re-collapsed. I hate to say it. It feels like such a disappointment, not only to myself and my family, but to my MS family, my friends and everyone else that felt so happy for me that I finally felt normal again.

I forgot about everyone on this forum when I felt good. And now that I feel like crap again, here I am, ashamed and humble that I am coming back to you for support and help and advice and info. If I had a tail, it would be between my legs right now.

I guess the re-stenosis occurred slowly. I started to feel the pain in my feet, and after about four weeks it's now up to my thighs. And it gets more intense every day.

I want to go to California and have it done again. But I am just so conflicted. Is this sort of set back normal? Should I go again? What are the risks of that?

How many people on here felt great, then like crap and what have they done?

I just don't know if I can go back to where I was. I feel like my spirit is hanging by the thinnest of threads. To have three months of being normal and the last month is like going back to the crap-pile and it's devestating.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Cece » Sat Jan 29, 2011 10:07 am

Welcome back Villagemaid although I wish the circumstances were different.
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Postby blossom » Sat Jan 29, 2011 12:15 pm

hi villagemaid, you can get your tail out from between your legs. i'm sure no one on this site is judgeing you. you got a reprieve from this miserable disease and was out there smelling the roses that all of us so badly want to do. there is sure nothing wrong with that.

look at the bright side. at least you know the treatment helped you. some of us here got nothing out of it and some got worse. so, we all want to know what's up with that. and, like myself, we're hopeing they get this figured out soon.

in the meantime, you can look at what's been going on here and maybe it will help you decide what to do next. dr. sclafani's up and running and the hubbards are trying hard to get this all figured out, dr. arata i hear is very good, dr. mehat a vasc. dr. will i'm sure for some be the answer and dr. flanagan a very respected and knowlegable chirpractor is on board and helping some.

leonard just put a thread up that is very interesting and could play a big part in this puzzle.

hopefully, soon they will work together and get this figured out so it helps
us all and it is lasting. but, in the meantime, you need to know that people here do care and we all feel and share your frustration.
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Postby Villagemaid » Sat Jan 29, 2011 1:02 pm

Thanks SO much Blossom.

I know that no one on this site is blaming me, I just feel horrible for not being on here and helping people out and giving my account so that other people can benefit from my experience.

I guess I'm in a denial-depression stage right now. This too, shall pass (hopefully :? )
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby blossom » Sat Jan 29, 2011 2:27 pm

most of us at times want to throw in the towel. but, then you dig in your heels and go another round or whatever it takes. i don't hear any bell ringing and the fights not over yet. but at least for the first time there is a fighting chance.
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Postby L » Sat Jan 29, 2011 2:31 pm

Hello again. Hey, at least you know you're treatable and that the treatment can be repeated, so go and get it done again!

I like your avatar by the way!
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Postby PointsNorth » Sat Jan 29, 2011 3:58 pm

Hang-in there V. You had very good results and I should think that by the time you're treated again you will fair better still. I had 8 days of symptom relief so I know it's real for me. I'm waiting for more movement along the learning curve. I think time is on our side - at least in the short to medium term. The 'forum' has picked up in the last few weeks and there is no shortage of new material.

Best, PN
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Postby burg » Sat Jan 29, 2011 5:43 pm

Hi Villagemaid... Same thing..I did Bugaria, and felt great for 3 weeks..then slowly regressed.
Once you felt that normalcy again...there is no going back...I just want to feel good again.
Went to Albany...restenosed...
Went back last week...had a stent put in...On ultrasound, refluxing now above stent.
I'm not going to stop...I'm going to keep going till we get it right.
I know it worked and I want it to work again.
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Postby Villagemaid » Sat Jan 29, 2011 6:07 pm

Thanks everyone for your kind words and replies - it is taken to heart.

It's an old scotch saying (my grandma used to say)....'keep yer pecker up'.......I sure hope the mods don't delete that...lol..it's a cultural saying.....for real...... :D
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Music » Sat Jan 29, 2011 6:26 pm

Hahahahaha Altho my scotch Granny would never have used this, my English Mother-in-law does!! Yes, this is a real saying.........

Keep positive VM - it really helps!
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Postby Villagemaid » Sat Jan 29, 2011 6:57 pm

Thanks Music....lol......we had it first.....lol....the brits stole it from us.....
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby dania » Sat Jan 29, 2011 7:34 pm

I restenosed 1 week after the first procedure. Have tried 5 times in all and now my veins are so badly scarred it is impossible to get into them. It would be interesting to see how many people restenose and become more disabled. I think there are more that have this outcome than those that have it done once with improvements that stay with them.
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Postby soapdiva884 » Sat Jan 29, 2011 7:46 pm

Hi Villagemaid! As you can see from my signature my BF had the procedure done in Nov. and he had great success. But, he is going through elastic recoil on his jugular. He is feeling worse than before the proc. and is going to have the proc. again with Dr. Sclafani. I hope you can work through these conflicting issues and make the best decision for you. And, no we don't judge you for going out and trying to forget about MS and live a normal life. But, welcome back :D
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby laura383 » Fri Feb 04, 2011 10:10 pm

Villagemaid: Hi, don't sweat it. When you feel good, when you are living your life, we are all happy about it and happy for you. This re-stenosis thing really does suck, I have it too. No one objects to your being gone from the forum because you feel good!
I was gone too. Heck, I went to India for treatment, re-stenosed and went to Mexico. I felt so good after my treatments I thought I could have a normal life again.
Now it's later in the learning process and we are getting the picture: it may need to be done several times. Find a place close by because you'll be going back. So, we roll with the punches and adapt.
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Postby Villagemaid » Sat Feb 05, 2011 8:55 am

Thanks everyone........ :)
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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