My Albany Angio Adventure

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

Postby Rieja » Thu Sep 16, 2010 8:57 am

Something I completely forgot - probably because I was in and out of consciousness. There were 2 medical interns there learning from Dr. Mandato. Not sure if it was for ccsvi learning or angio in general but either way at least this procedure is getting exposure to "newbie" docs :)
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Postby 1eye » Thu Sep 16, 2010 10:03 am

Cece wrote:The man doesn't believe in miracles, yet he has a woman like you on his side! What more evidence does he need! :)

Very glad the procedure worked, feeling in the feet is a good thing to have. Crossing fingers that more gradual improvements come.


Hey, it isn't an overnight thing! I have seen a lot of stuff about "miraculous" recoveries, but I rather think it depends on how long you were sick, and how bad it got. I've only experienced healing that took time. Now there might be some evidence in what you say, for tremendous good luck! I remember the scene where the airplane hit the roof, and Garp says "I'll take it! It's pre-disastered!"

I'd say odds are both of you will continue your lucky streak...

When I was 13 I had a disease that kept me in hospital for 2 months, and in bed for altogether 6. I had to learn to walk again. I am not expecting anything much better than that: you have to work at it, but it's worth it.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby newfie-girl » Thu Sep 16, 2010 10:18 am

1eye and reija..............wowyou guys actually got to sleep. I had a valium half way through the procedure, cause they forgot to give it to me :cry: I felt EVERYTHING, but we women are so much more tolerant of pain :lol:
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Postby Rieja » Thu Sep 16, 2010 1:32 pm

newfie-girl wrote:1eye and reija..............wowyou guys actually got to sleep. I had a valium half way through the procedure, cause they forgot to give it to me :cry: I felt EVERYTHING, but we women are so much more tolerant of pain :lol:


They forgot?!?!?! OMG
I really hope you are OK now. They told me that I would either be - awake, asleep or inbetween. I was inbetween. Felt like 20 mins but actually was 2 hours.
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Postby Trish317 » Thu Sep 16, 2010 4:34 pm

Cece wrote:The man doesn't believe in miracles, yet he has a woman like you on his side! What more evidence does he need! :)

Very glad the procedure worked, feeling in the feet is a good thing to have. Crossing fingers that more gradual improvements come.


Thank you, Cece. I appreciate the wonderful compliment.

I tell him all the time that just the fact that we met is a miracle. What are the chances that a man in Minnesota and a woman in Rhode Island would just happen to run into each other on the internet? How we met is kind of a long story but, to me, it's the stuff that fairy tales are made of. He doesn't believe in those either. lol! :P
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Postby hannakat » Thu Sep 16, 2010 7:52 pm

Hey Rieja! So glad you're on the 'other' side of liberation now! Thank you for sharing your experience so honestly and thoroughly...it means a lot to those of us still on 'this' side!! LOL!

Your patience will pay off....3 months of healing.... wishing you all the best!


1eye...wow. Your journey has been pretty incredible....wishing you all the best as well!

~^,,^~
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ccsvi

Postby blossom » Fri Sep 17, 2010 2:31 am

trish, the very best to you and your loving man. he can feel his feet to me that is something not to be taken lightly. continued progress.
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Postby BooBear » Fri Sep 17, 2010 5:07 am

I know there are still a lot on the list, but it makes me smile to see so many of us on this board on the other side now.

Grinning ear to ear. :)
Three veins angioplastied.  One renewed life.  
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Postby Rieja » Fri Sep 17, 2010 11:54 am

How are you doing Boo? Anything new? What has it been... 1month?
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Re: ccsvi

Postby Trish317 » Fri Sep 17, 2010 2:58 pm

blossom wrote:trish, the very best to you and your loving man. he can feel his feet to me that is something not to be taken lightly. continued progress.


Thank you, Blossom. Today he told me that nothing is different than before the procedure. The trip home yesterday was difficult for him. So, time will tell. I think he'll feel improvements gradually.
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Postby Rieja » Mon Sep 20, 2010 7:50 am

What I will end up doing is posting here on a weekly basis on my outcome. I have day to day and month to month is too long. So once a week should be good for anyone trying to keep tabs.

If all goes well... 12 "update" (3 months) should give a good look at my, hopeful, advancement.
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Postby Cece » Mon Sep 20, 2010 12:12 pm

Rieja, thanks for having a planned update schedule, I hope there will be many improvements to report!
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Postby happy_canuck » Mon Sep 20, 2010 1:54 pm

Reija,

I know my recovery is different from others too. The things I thought might improve -- numbness and walking -- are almost the same or a bit improved after 10 weeks. Things I never dreamed would improve -- swallowing, spasms, heat tolerance -- improved immediately. We just don't know...

I'm curious why Dr. Mandata recommended aspirin 325 mg for 3 months? He said he doesn't recommend aspirin for routine angioplasty. I was ballooned 9 times -- I didn't think that was routine! Neither does my doctor here at home, so she told me to take 80 mg of aspirin a day.

May I ask if there was something remarkable about your angioplasty that Dr. M recommended aspirin? You can PM me, if you prefer. Thanks!

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby BooBear » Tue Sep 21, 2010 9:03 am

Rieja wrote:How are you doing Boo? Anything new? What has it been... 1month?


You know, I am just living life, Rieja! I feel great. Fatigue is still gone- brain is still sharp- pain is absent.

I had one new lesion on a MRI (active lesion at that) two weeks ago, but my EDSS was zero. :)

My flexibility and balance are fully restored.

All I can say is that I have zero regrets. I would do it again if I needed to.

I never wanted miracles. All I wanted was normal. :)
Three veins angioplastied.  One renewed life.  
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Postby sbr487 » Tue Sep 21, 2010 9:34 am

BooBear wrote:
Rieja wrote:I had one new lesion on a MRI (active lesion at that) two weeks ago, but my EDSS was zero. :)


Boobear & others,

Its possible that even normal people (like you) can have negligible reflux. And from time to time the immune system cleans and then remyelination happens. So, is there a study to show that normal people don't end up with temporary lesions?

I might look a bit far fetched but I am really interested to know
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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