starting to panic

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

Postby L » Mon Dec 13, 2010 2:31 pm

A promising start, congratulations!
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Postby CCSVIhusband » Mon Dec 13, 2010 3:24 pm

javabean wrote:Had my procedure today. Blockage found it both jugulars -- to the point they were almost completely closed. Also azygous had blockage and balooned. Siskin said the veins opened well.
As far as symptoms, it seemed easier walking back from the procedure than to the procedure. Could be placabo, hope not. Feet still tingling in feet. Pain and spasticity unknown, but like I said, walking seemed better. Let's hope the good feelings continue!


Rest and relax ... take a few days before trying to test your new blood flow and drink a lot of liquid!

You're off to a positive start it sounds like ...

All the best, and keep us informed!
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Postby bruce123 » Mon Dec 13, 2010 8:22 pm

Javabean, I am happy for you. I sounds like your blood flow is much better than it was before. Hopefully this will result in many positive changes. Don't expect too much too fast. Everyone is different. We're all pulling for you.

Bruce.
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Postby javabean » Thu Jan 06, 2011 8:21 pm

So, I am coming up on four weeks and the improvements I had initially are gone. After the first few days I walked nine blocks, stood for 25 minutes and a few other things. Now it's gone. I am feeling hopeless again. Dr. Siskin says give it three months but doesn't it seem I should have soemthing by now? I couldn't walk around the block for anything at this point. Is there still hope?
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Postby Cece » Thu Jan 06, 2011 8:52 pm

It's good advice usually to listen to your doctor, if he says to give it three months, he has seen patients who improve over time like that.

But it worries me that you had improvements and lost them as that is potential restenosis. Do you have any local access to a doppler ultrasound? That could be reassuring or informative.

I hope those gradual improvements come. Yes, there is so much hope. Either over the next few months or with all the hard work that our doctors are doing to investigate and improve on what they're doing now.
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Postby javabean » Thu Jan 06, 2011 9:09 pm

Yes Ceci,
Siskin did give me a name of a doctor here in Chicago for my three month follow up. I wonder if I should see him before the three months to see if I have had restenosis.
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Postby Cece » Thu Jan 06, 2011 9:23 pm

I can say what I would do, which is, yes, I'd call and get a doppler. They're quick and easy and cheap esp. if insurance covers it. There are some doctors who have their patients checked at 1 month after the procedure so you are right on the mark, if you were the patient of one of those docs.

If a doppler shows you're fine, then that's good to know. If it shows a clot, then you'd have options now while it's fresh that you wouldn't have months down the road.

Just my 2 cents, which I tend to share so freely, I'm probably down to 1 cent. :)
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Postby David1949 » Thu Jan 06, 2011 9:24 pm

It might be a good idea to have the doppler ultrasound just for your peace of mind.
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Postby javabean » Fri Jan 07, 2011 9:41 am

Thanks David and Cece.
I just called to make an appointment for the doppler. Like I said, I know my body well enough that what I did could not be placebo, as powerful as I know that can be. I hope I'm not just being impatient, but it seems like the right thing to do.
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Postby msgator » Fri Jan 07, 2011 6:19 pm

I had an US at one month, because after getting better I had 48 rough hours. Turns out I get them every time I have my period. (3 now since my procedure) Still trying to figure out what that could be related to.....

I also started Physical Therapy three weeks ago and have found that very helpful at learning where my true weaknesses are. (turns out I am a master compensator) It is also satisfying to see and have someone else note improvements.

Best of luck to you.

Ann
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 javabean » Sat Jan 08, 2011 6:06 pm

Does it seem logical that I would only get the ultrasound and not the venogram? I have an appointment for Februery 14 but I didn't get a chance to talk to the doctor and ask the specifics.
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Postby L » Sat Jan 08, 2011 7:19 pm

javabean wrote:Does it seem logical that I would only get the ultrasound and not the venogram? I have an appointment for Februery 14 but I didn't get a chance to talk to the doctor and ask the specifics.
Thanks


Yes, I think so. Less radiation exposure and the chances or restenosis are much slighter in the azygous they say.

Unless you feel strongly that the restenosis is affecting spinal lesions (although the connection between spinal lesions and the azygous may be called into question by future findings) this is probably the best choice.

You and your doctor have to weigh up the risks..
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Postby javabean » Sat Jan 08, 2011 7:46 pm

Thanks L, yes, I guess a whole new venogram might be extreme. I don't know...
I just don't think I could have walked like I did as a result of placebo. Does that seem possible? I mean, after the proceddure I walked in the airport from the gate what I had to be taken in a wheelchair on the way to the gate. It just doesn't make sense to me...five days of improvements and then back to zero. Once again, waiting for another date. They said maybe they cn get me in earlier. Thank god I'm still on maternity leave.
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Postby L » Sun Jan 09, 2011 4:10 am

How about you get the ultrasound and if they find a problem then they will check the azygous during the procedure. If they don't find a problem then you worry about the venogram. In any case, take heart because whatever was fixed before can be fixed again and you'll experience the same benefits. Let's hope they are long lasting thie next time.
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Postby javabean » Sun Jan 09, 2011 4:50 pm

Based on jotting some things down, for me it was three days before I felt some improvement and ten days of improvement swhich then went away. I have heard of others who have had symptoms come back within two weeks of the procedure. Do others have thoughts about that?
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