I'm so glad

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

I'm so glad

Postby Loobie » Wed Nov 11, 2009 11:10 pm

Right now I am just so glad that the procedures are over. I've been doing this since July and I am just procedure weary. My hat is tipped to anyone who has to go through months of chemotherapy and other long term unpleasant drug therapies. I can see why some people who've done it once, just choose to not to round 2 if the Dr. recommends. And this wasn't even close to feeling like that. So now I have someplace to send my daughter if she shows the first signs. I might even get proactive like Sharon and just get the imaging done to see what's what. I don't think I'll do it yet though as I think it would over the top freak on her mind at 13. I don't imagine she's capable yet of seeing how awesome this has maybe become for newbies and would just dwell on the "I have MS" factor, even if she was showing no symptoms. Preventative anything is just not in a 13 year olds' vocabulary. At least not this ones'. She's still feeling like health is a given as I'm sure as I did at that age.

I don't know why I felt like posting this. Probably because I now seem to write everything down! But it has worn me out. Emotionally, spiritually, everything. Agonizing over every little ache and pain that feels different and wondering if the stents are all right. Well now I know they've taken well and it's time to turn my eyeballs back out to the world and focus on what I can still do and do right. Time to quit analyzing ME. I'm quite sick of it frankly and just want to go back to living. I know I've still got many symptoms, but if they don't get worse, I need to quit "working" on it. I totally see why people like Michael J. Fox and Christopher Reeve were as tireless in their pursuit of making people's lives better. But they have the means; I still have to work and be a husband and father. I think I've taken my eye off of that in these last few months, and even before the procedure in anticipation months before it. I'm not leaving here, but I just want to quit microanalyzing my every damn move. I really, really want to quit thinking about MS for a while. I don't know how that's going to work out, but I've got to try for the sake of my family. They must be getting sick of me talking about it all the time.

Oh well, that's where I'm at right now and I can't tell you, whether it works or not, how relieved I am to be "OK'd" by the doctor and be able to eat what I want, take what I want for pain, and get off the damn blood thinners! Man I'm glad for that. Well it's off to bed for this cat and on to another sucky day of travel tomorrow. Thank God it's Friday!
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Postby cheerleader » Thu Nov 12, 2009 7:20 am

Hey Lew...
it's actually Thursday, but Friday's coming. You are an impatient one, huh? :)
SO glad the blood thinners are done, the jugs are freeways, and the only thing on your agenda is live.
We know where to take our kids if, God forbid, we ever have to think about it...but I'm also trying to live in the now, enjoy every moment and drop kick my worrying heart to Jesus. Easier said than done.

Have to say, I was really kinda jealous reading about all the face time you got with the TIMS crew...as Marie said, the "cool kids" got to hang out together. This community is exceptional on so many levels. Get home and get back to your family. You deserve it-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Thu Nov 12, 2009 8:02 am

Lew!
Thank God it's Friday!


There you go again -- you are too impatient -- it is only Thursday!

Safe travels home -- think on how to start living your new MS life. You have a beautiful family. Take it from me your daughter is going to be twenty before you know it - do not miss out on the joys of having a teenage daughter :wink:

It is so good to hear you be upbeat and positive!

Sharon
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Loobie

Postby GiCi » Thu Nov 12, 2009 8:04 am

I wish to join cheerleader: congratulations and please focus on the fact that MS is not a disease but a consequence of a congenital malformation of our neck veins: it can be fixed.
GiCi
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Re: Loobie

Postby Loobie » Thu Nov 12, 2009 9:33 am

GiCi wrote:I wish to join cheerleader: congratulations and please focus on the fact that MS is not a disease but a consequence of a congenital malformation of our neck veins: it can be fixed.
GiCi


That's a great quote GiCi. I will use it often!
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Postby bestadmom » Thu Nov 12, 2009 10:20 am

I agree about Gici's quote. You sum it up an a neat little nutshell, and it makes perfect sense and is understandble for the average person. Absolutely perfect!
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Postby mormiles » Thu Nov 12, 2009 10:28 am

Hey Lew, Congratulations bud! Everything you said...that's what we all want...just going about the business of living without a fixation on MS. And now, you've got it, and God bless you and your family and the rest of your life.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby MaggieMae » Thu Nov 12, 2009 10:44 am

I agree. GiCi can say so much in one sentence. I'm typing it and putting it on my frig to remind me to stay positive. Need something especially after meeting with my husband's neuro this week who was not very encouraging about CCSVI even with all the papers and information I have been sending him. Not nice at all. Anyway, sounds like a good statement for marketing - MS is not a disease but a consequence of a congenital malformation of our neck veins: it can be fixed.
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Postby cah » Thu Nov 12, 2009 3:00 pm

Odd one out:
Congenital jug ears - adequately fixed by surgery
Congenital cleft lip - adequately fixed by surgery
Congenital vein malformation - inadequately fixed by continous shots
Congenital club foot - adequately fixed by surgery
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Re: I'm so glad

Postby CureIous » Thu Nov 12, 2009 3:17 pm

Right on bro! When I sent out my mass email before the follow up, I said there would only be another email if a follow up surgery was needed, "if you don't hear anything else, it all went fine". I hear you on the rest of it, for a time (and I tried not to do this too much but it's impossible), life kinda revolves around the procedure and you and insurance and recovery and updates all that. Tis good though, time and place for all of that. In fact our latest family gathering, I made a point to not bring any of it up and just talk normal chit chat. Sweet!

Yes, life goes on, I know my kids missed me and the wifey and whoever else, being "sick" is the easier (didn't say easy or easiest) part. Picking up the old bed and walking like Lazarus, that's the tough part. One must ask theirself before undertaking this, "do you WANT to be healed, or at least improved or at the very very least, not getting any worse". Can you take off the mantle of Perpetual Patient and think of your "disease" in different terms?

Dude you're one of the few who had to endure another procedure here and took it all in stride. Keep up the good work, keep us posted, do what ya got to do and enjoy life and we all hope this will spell a permanent end to your progression. Plus I might need some teenage girl advice later on so make sure you send me the manual on that! :)

Mark Miller
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Ruthless67 » Thu Nov 12, 2009 6:01 pm

Yes Loobie,
Please get on with the business of living but please don’t abandon us completely in the process! I have truly enjoyed reading your posts since I found the TIMS boards less than a month ago. You have made me laugh at myself as well as your posts. You have touched me at times with your honesty and ability to be perfectly candid. What would we do without you?
Hugs and hope the healing is ongoing for you,
Lora
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Re: I'm so glad

Postby vendredi5h » Thu Nov 12, 2009 7:25 pm

CureIous wrote:do you WANT to be healed, or at least improved or at the very very least, not getting any worse

Ok, I'm new here and there is so much stuff to read! I'm sure it's written somewhere but where are we, what do we know (or what seems to be) in the relation between stenting troubled veins and stopping MS progression? I'm not talking about improving after the surgery, but stopping the progression. Do we have enough data and for long enough to know if MS progression stops?

Thanks for your help!

Yannick
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Postby Jamie » Thu Nov 12, 2009 7:49 pm

I know what you mean mate.

We're there now.

Mel's at a conference the first one 'post-MS', I remember how hard it was for her when she went two years ago to the same thing and the news of her MS had 'leaked' and everyone treated her weird and she couldn't go to the dinners etc.

She's not once mentioned it pre or during her trip, not even remarked how much better it is this time, I dearly hope she's not even thought about it.

I hope that for everyone.

But I hope it for you more than most. :) Your goals are so modest yet so hard to achieve they break my heart.

Jamie
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Postby CNClear » Thu Nov 12, 2009 9:17 pm

Now THAT is a really good wish for everybody!!! :)

I'm really glad that Mel seems to be returning to her life...I only hope that someday people who 'had' MS, won't even remember those days...and people, in general, will, eventually, not even know what MS was!

THAT would be too cool!!! 8)

Lisa
aka CNClear
dx 1983, will be 51 in 6 daze (yikes!)
Have appt with Dake on Dec 8 th & 9th
(This is who 'Lisa' is...)
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Postby Sharon » Fri Nov 13, 2009 8:01 am

Yannick wrote
Ok, I'm new here and there is so much stuff to read! I'm sure it's written somewhere but where are we, what do we know (or what seems to be) in the relation between stenting troubled veins and stopping MS progression? I'm not talking about improving after the surgery, but stopping the progression.



Dr. Zamboni has written and reported on patients he has tested and performed his Liberation Procedure on. These patients would be about 1 year out from the procedure. Look at his website to read all of his research
http://www.fondazionehilarescere.org/eng/index.html

In answer to your question
Do we have enough data and for long enough to know if MS progression stops?

Dr. Zamboni's work has shown the progression to have stopped over a short 1-2 year time period -- because the research is relatively new, there is no long term data.

Sharon
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