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

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

Postby hannakat » Thu Aug 05, 2010 6:49 am

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Postby HappyPoet » Thu Aug 05, 2010 7:19 am


Yes, spittin' and sweatin' are good but getting sick is not! Your emotions will settle down soon, and you'll stop analyzing every little thing that does or does not happen, so don't be too hard on yourself. Get all the sleep and rest you possibly can... sleep is the best medicine.

Your body is trying to adjust to your new blood flows, but you have major stressors that are slowing down this adjustment -- so try to concentrate most on minimizing your stress because stress is a vaso-constrictor and can be our worst enemy.

I'm sorry your oldest daughter is not being supportive. I know that one day she'll regret her selfish behavior, but you need her now. Perhaps if she'll read this thread, she'll realize how helpful she can be for you at a time in your life when you need her the most. Or, you can put her on the phone with me, and I'll set her straight ;)

This coming week will be a better week, I promise.

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Postby PCakes » Thu Aug 05, 2010 7:54 am

prayers for continued healing.. body and soul..

Some wise words from our 'Cheerleader'..

***Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.
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Postby aliyalex » Thu Aug 05, 2010 8:05 am

Pam said it so well. I just want to add, in the worst case scenario, and to me it is not so bad, you saw the cause and effect of blood flow/improvements. that is a reality. nothing can change that. No fear or pharma propaganda.

the procedure is proven in my book. It is a matter of tweaking it.

Another point is that we all have varying degrees of PTSD, post-traumatic stress disorder. We have been through so much heart ache AND SO HAVE OUR CHILDREN. there is no question to me that this makes us/them much deeper and stronger as individuals. As helpless as we have felt, our children have felt so much more. It is understandable that your daughter would even have fear of hoping and more helplessness. to me she just needs to be held that much more.

our bodies are similar to our children. their reactions can be parallel. our bodies have been struggling so hard to heal. look what happens when they get some blood flow.

As Pam said, there i a lot of adjustment happening. Healing to me is never linear.

Keep posting so we can support you so your children can feel relief to feel whatever they need to feel.

i am grateful that this is happening when i am still alive. Everyday there is more discovery.

if your body is feeling sick, nurture it. your immune system is probably clearing some stuff.

my liberation is in 3 weeks. you might have to say this back to me. it is easy to forget when it is your own fear. at least for me.
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Postby ozarkcanoer » Thu Aug 05, 2010 8:22 am

Bluesky, I read your last post earlier today and wanted to say something comforting to you but words are so hard. I am scheduled for the procedure on August 17 and I am keeping my expectations very low but it is hard not to let emotions get in the way. All the doctors who are cautioning us that it is too early and we should only get this treatment in a trial may be right. It could be that we still don't know everything there is to know about treating CCSVI. That is what the doctors said at Dr Sclafani's symposium. They are learning with each procedure they do. And it is also very hard to admit that the science really hasn't been worked out about the exact mechanism of CCSVI and MS. We are still pioneers. I hope for all our sakes that very soon the knowledge will explode and this is truly a breakthrough. When I read your post I was looking forward to how I will feel in 2 weeks and my heart goes out to you. Thank you for sharing your story. Maybe your story isn't finished yet and time will show more improvements or you will get more treatments.

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Postby Trish317 » Thu Aug 05, 2010 8:24 am

Sending you prayers and good thoughts, Bluesky....
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Postby AMcG » Thu Aug 05, 2010 11:13 am

I too have been really pleased to read your posts. Thanks.

I was like you in the morning before my liberation- get out of bed with a headache and everything pushing down on me - sit in a chair for half an hour to come round - by midday starting to be able to do things. I also had something similar with my ears and my eyes are moist too. I also bled the day after my procedure. I am OK now so I hope we might have that in common too.

I have had four throat/chest infections in the three months since, and one epididymitis which baffles me as I am quite careful about hygiene. So I have been feeling bad quite a lot of the time.

The first one I got gave me a sore throat, tight chest, made my dizziness and nausea worse etc. Of course I thought 'It is the MS coming back' But it wasn't. Each time after a few days or a week I got better again and regained all the improvements. So I hope in a few days you may be OK again too.

In any case you have already proved you can respond to the treatment. You know your body can do it once and what can be done once can be done again. I am sure there is a lot yet to learn about this treatment. I really hope you are like me (very lucky) but even if you are not I think it is just a matter of time until better treatments are available which will last.

Hope you are better soon!
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Postby Cece » Thu Aug 05, 2010 11:44 am

bluesky63 wrote:My oldest daughter was very negative about me doing this in the first place -- she said, "Haven't you read Flowers for Algernon?" :-) (She didn't go with me, by the way, just the younger two.)

I think our oldest are the most tuned in to us. (She must be worried for you or not wanting to get her hopes up?)

Maybe read Flowers For Algernon together. :)

Hope you keep on feeling better and that the stress and sickness is behind you soon.
Last edited by Cece on Thu Aug 05, 2010 12:03 pm, edited 1 time in total.
"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 msgator » Thu Aug 05, 2010 11:50 am

wishing you all the best and thinking of you. We are pioneers in this and you have already given back, by allowing a doctor to learn more and do a better job in the future.

Keep taking care of yourself and keeping us informed.


always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby aliyalex » Thu Aug 05, 2010 12:29 pm

i'm not sure that there is a connection or not, but when i started to respond to the lyme treatment, i started to get sick a few times after not getting anything for years. my joke was , "i dont get anything small." My doc told me my immune system was turning on.

perhaps things are normalizing?
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Postby Daisy3 » Thu Aug 05, 2010 3:22 pm

Hey Bluesky,

Thinking of you everyday, hope things improve..be well!!
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Postby Guider » Fri Aug 06, 2010 6:52 am


I agree with Ozarkcanoer. I too do not know what to say except that I truly appreciate you posting what you feel and allowing US to share it with you. I understand how you felt not being able to share with your sister. I was the same with my mom. Even now whenever I do some craft etc. my instinct is to show it to her - but I cannot.

I sincerely hope that the stress levels in your life settle down. Our 'nerves' can do so much to us. Newfoundlanders have a saying 'Oh me nerves!" :) :) And of course everyone understands what they mean. Please rest and take care and continue to post.

Love and prayers,
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Postby BooBear » Fri Aug 06, 2010 9:41 am

Keeping you in my thoughts and prayers, BlueSky!!!!!

Get rest, get better!
Three veins angioplastied.  One renewed life.  
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Postby bluesky63 » Fri Aug 06, 2010 3:48 pm

Thank you everyone for the great support. :-) What a difference it makes.

And the very specific advice and info and experience from those of you who have been through this is so important and so encouraging!

I feel better today, and I think having the sore throat/cold definitely plays a role. I also talked to the doctor who did the procedure and felt much better after that. :-) I think things will calm down and normalize.

After all these years, I need to keep my perspective!

So . . . we still have the spit and sweat . . . hurray for body function. :-) I was interested that the doctor said he wouldn't necessarily rule out placebo on things like that. Hmmmm!

I also have been having more normal bladder function -- which is supposed to be a good thing, but I've been so used to not having to deal with it that this is a whole new thing! I'm used to going when I want to, not because I feel it. But this is the body coming online, right?

I have had some headaches, but they go away.

I have not had any seizures since the procedure. If I get through a whole month I will think this is significant. Three months and I will know there was a definite effect. Fingers crossed. :-)

Legs still weak. I cut back on my baclofen, but I wonder if I was too drastic and had some rebound stiffness, so I am being more modest, but still cut down some.

edited to add one difference i discovered that I don't understand -- just noting down -- for years i have not been able to drink much without stopping for air; i have found that i can actually drink a regular glass of water without gasping, like i used to.

I think what I wrote about my daughter gave the wrong impression -- she worries about me and is medically squeamish. She referred to Flowers for Algernon, thinking about the main character who is part of an experiment that supposedly "improves" him (it makes him much smarter) but then everything reverts to how it was before; she was afraid I'd end up worse off, and she hated the idea of the balloons and especially the potential for stents (which I do not have). She gets dizzy when people start talking about anything medical. I think she's more positive now. :-)

Overall . . . some basic body functions happening, my head seems more clear, my cranial nerves seem better, and that's good stuff! :-) If the lower body stuff and the vision are longer term damage, we will wait and see.

Thank you again . . . I am supposed to hang out with my little guy right now, and I will find some time to check in again later! :-)
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Postby Guider » Sun Aug 08, 2010 11:18 am

Hi Bluesky,

Glad to hear your report and wishing you continued improvement. Say Hi to your kids from me please.

Continue to take care.

Guider :)
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