Excited, numb, scared, you name it -- liberation today!!!!!!

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

Postby IHateMS » Sun Aug 08, 2010 11:17 am

congrats
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Postby Johnson » Sun Aug 08, 2010 1:07 pm

Hi bluesky,

I have only just seen your thread, and I am so very glad for you to have been "done" It sounds like quite the marathon. My own procedure was only about 50 minutes, and looking at my videos from the procedure, I feel as if I was rushed through.

It is hard to know what to think at first, so give it time. I was told to give it 3 months, but I think that you will know if you need more work done before that (I did within a week), and if you just keep improving, great!

All the best, and continuing improvement to you. Are you out of the chair?

J-not
My name is not really Johnson. MSed up since 1993
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Postby agate » Sun Aug 08, 2010 1:48 pm

Hi bluesky,

I doubt if you remember me but you were among the very kind people who welcomed me back around 2001 on another MS board, and I've often wondered what became of you.

I don't look in here very often, but I found this thread today and just wanted you to know that I hope all is going well for you!

Take care, and I hope your improvement will continue!
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Postby simone » Sun Aug 08, 2010 2:46 pm

Hi Bluesky,

Just found your thread and am so happy to hear that you got treated. Your posts are so palpably descriptive and your sharing very much appreciated. I am amazed with all you have been dealing with and being able to take care of your children, including cognitive impairment, you can be so lucid.

A good friend said to me that the body takes time to get used to changes and can panic at not recognizing what has been the habitual states. Have recently also been fortunate to have been treated with the liberation procedure. Will post soon . The observation about saliva is something i did not put together with this but have the same experience, as well as many other symptoms i thought where unrelated.

The link of so many symptoms seems undeniable with CCSVI .

I wish you all the very best continued healing for yourself and your children.
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Postby rssugg » Sun Aug 08, 2010 5:44 pm

Yeah - keep it going!! Congrats
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Postby bluesky63 » Sun Aug 15, 2010 5:20 pm

Hello, my wonderful friends. :-) I have so much to say but only a moment to steal here. I know I've already said it, but every single word from you is so deeply appreciated, and I sit here and talk to the screen and say more than I can ever write. :-)

I would like to go into more detail, but the brief report is that in general there continues to be positive along with neutral results. I can see that another checkup/venogram at some point would be useful. I see "ten days" mentioned over and over and wonder if there is some natural physiological response that happens that could be investigated?

I am going to use a few of my limited minutes to try posting a couple of images. I'm not computer savvy!

If it works, great. If not, I'll try again when I can grab a few minutes. I don't know any details except the last image is probably not what you think. :-)

Image

Image


Image

Image



Healing is so much more than a day procedure. Our bodies and our lives are complex and amazing. Having done this Liberation, I am amazed at what seems to be connected to proper blood flow. But having significant disability, I am also humbled by how much damage there can be to address.

I think that some of those before and after videos would make people think that angioplasty would have all of us heaving our wheelchairs and canes over the nearest cliff. If only that were true! It's a huge part of the picture, and I am a true believer, but be prepared for realism. I was honestly angry when one prominent CCSVI clinic staff person laughed at me when I asked about wheelchair access -- she implied I wouldn't need it afterward.

Well, I've had definitely some positive results, but I've used a wheelchair for eight years, and I still need my chair, and I think it's not right to give us the wrong impression!

I am so encouraged by my positive results, but this experience also shows me that a close, ongoing relationship with the vascular interventionist will be extremely important over time, as well as a supportive medical team.

As I said, healing is not a day procedure, and as this all is researched and explored and we all learn and heal, our knowledge will grow exponentially. I hope we can do this unfettered.

I am so happy to be part of this growth and part of this group. :-)
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Postby CRHInv » Sun Aug 15, 2010 5:29 pm

Hey Sky! Thanks for the update! I am keeping you in my thoughts and I am so glad you checked in.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby hope410 » Sun Aug 15, 2010 7:07 pm

Thank you for updating us on your status! (I have no idea what the pics are of though! :D )

Thank you for the reminder that this is not a miracle. It's easy to get swept up. You are right, we are HEALING. And that takes time.

Wishing you further improvements!
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Postby Guider » Sun Aug 15, 2010 7:11 pm

Sky, thank you for posting and please come back and do so again some time.

Hope I appreciate your post. So true.

Guider
Live to the fullest; Love passionately; Laugh contagiously!
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Postby CRHInv » Tue Aug 24, 2010 9:38 am

Hey Sky, How are you?
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Vhoenecke » Tue Aug 24, 2010 10:29 am

Bluesky,

Thanks so much for sharing with us it means so much to rread about your journey. I was really touched by what you said regarding "inside" feeling. I had my procedure at the end of April and my family has noticied big changes in me. The most profound change that I have noticed is the inside feeling that I have or actually don't have anymore. The overwhelming terrible feeling is gone and I was emotional when I read how you felt. No one gets this unless they have felt the MS monster and then have it taken away. Continue to rest and get well, recovery from the procedure that you had could be up to a year. I wish you all the best and look for continued reports.
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Postby orion98665 » Tue Aug 24, 2010 11:51 am

Bluesky, Your an inspiration to this board keep healing!
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Postby newlywed4ever » Tue Aug 24, 2010 6:20 pm

orion98665 wrote:Bluesky, Your an inspiration to this board keep healing!


I agree! I've become a bit of a "groupie" to certain people in this CCSVI forum - and I'm definitely a great fan of yours :D
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