Just a BAD COPY......

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

Postby burg » Thu Aug 26, 2010 10:08 am

By the way...your detailed post was the best I've seen..Great job...
By the way BadCopy...Happy Anniversary!!! One Week!!
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Postby BadCopy » Thu Aug 26, 2010 10:23 pm

burg wrote:Are there any more tests like ultrasound after procedure??
When were you able to go home??? Next day??


In my case there was no other test (Doppler) afterwards. I think that varies depending on findings and other variables but you would have to ask the doctors. After they finished I had to remain still in my hospital bed for a couple hours. When all is good I was on my way with my post op instructions.
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1 month

Postby BadCopy » Mon Sep 20, 2010 9:26 pm

1 Month Update

I saw good results for around 8-12 days initially. Shortly after that I started getting the cold right hand, foot drop, weak right leg, stretching leg after sitting for short amount of time, head aches (pressure), word finding, right leg bouncing. Word finding is bothersome again. Now that being said, I seem to have continued getting stronger, kept the balance improvements(that may be because of the strength?), there are days, and even times within a day that I can tell my walking is better again ,that includes foot drop, still dreaming again, cold RH actually seems more numb than cold and less frequent, fewer head aches. I forgot what it was like to dream :)

Things are definitely better that pre-op but, at least for the time being, less than they were the first week or so. At least for now things come and go but still are staying on the plus side. I am not going to rush to a decision as to whether veins stayed open or not. I think I am just going to take it one month at a time until my three month date. Along the way I will confer with my DR about what direction to take.
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Postby Rieja » Tue Sep 21, 2010 12:22 pm

I am doing the same thing Bad. Taking it one week/month at a time until the 3rd month hits. No improvements yet but time will be the ultimate teller.
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Postby BadCopy » Tue Sep 21, 2010 4:25 pm

Yea, I have had this for 17 years so I imagine plenty of the damage is permanent. But I have seen some definate improvement then other days setbacks, like today. But yes it's a personal decision on how to approach the restenosis question. For me I think I will push it to the 3 months. If I am how I am now or worse I will most definately have it checked out. If I am improving I may let it ride. I figure if after three months I have it checked and they are open then I have a sure answer. If I have it checked now and they are upen it could just be that I have not given things enough time. Just my opinion on my condition.
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Postby Cece » Tue Sep 21, 2010 5:35 pm

I am hoping we get a local site, it'll make the follow-ups so much easier.

Wishing you more of the days with the great improvements and fewer of the ones with setbacks.
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Postby BadCopy » Tue Sep 21, 2010 7:46 pm

Me too Cece. And I am still waiting to see the other one in MN show up on Hubbards map.

And thank you. It's really strange. It would be great to just have a firm answer but with things changing it's odd, but in a good way. At least I know that opening them had an effect and we will see what happens in the future.
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two months

Postby BadCopy » Thu Oct 21, 2010 9:56 pm

TWO MONTHS

To be sure I was getting unbiased opinion I asked my wife to tell me if I am still better than pre-op. Answer was yes and I would agree. I recover a lot faster, more energy, better bladder, better balance and a couple others.

Asked her to tell me how I am doing compared to when I first returned. Answer was worse when walking and she really could not see the other things. I would agree. My walking is near pre-op. I still enjoy several things, like being more alert, energy, those listed above, and feeling better in general.

I am not sure if I have had some re-narrowing or if this is just because of the fact I have had it so long but I am very happy I did it. I KNOW that it's real and so many people will benefit from the research, tesing and treatment being done. Imagine if this is the answer for the newly diagnosed. So many people would not have to deal with the things many of us have had to. That would be cool to see just 1 kid not have to go through it.

And yes I can't wait for MPLS, MN to turn red :)
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Postby CCSVIhusband » Fri Oct 22, 2010 5:09 am

Good stuff Bad Copy ... I hope it keeps up for you. I'll congratulate you since you're a success story (and others only applaud people for posting negatives but never congratulate the positives).

I want to make a comment (and this is just my opinion) but if you think you have re-narrowing, you probably do. You are the only one who knows how your body felt immediately after the procedure, and if something changed since, you're the only one who knows that too. Just keep that in mind, you you decide to have it looked at again.
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Postby BadCopy » Sat Oct 23, 2010 9:16 am

Yes I believe that I have restenosed but want to play it out through the 3 months. Just so I don't look like I am jumping to conclusions.
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Postby Cece » Sat Oct 23, 2010 11:38 am

BadCopy!!! Please don't make me haul up every drsclafani quote I can find in favor of immediately getting a Doppler if restenosis is suspected.
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Postby BadCopy » Fri Dec 10, 2010 8:51 pm

Well it has been almost4 months sice my Albany Angio. After receiving the benefits, those benefits slowly dissapated.

I have just gone in for round two. Will let you know how it goes in the next few days.
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Postby prairiegirl » Sat Dec 11, 2010 10:24 am

Hope all goes well for you! Thanks for posting your update.
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Postby Cece » Sat Dec 11, 2010 11:43 am

That's great, BadCopy! I hope you see those improvements again. Was this locally, with doc #1 or doc #2? Did he think it would hold this time?
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