A CCSVI Patient Log: All About Steve

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

Postby CRHInv » Tue Nov 24, 2009 9:18 am

We will take slowly, lets just keep the surely! I am thinking about you both and hoping for more good things.
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby LR1234 » Tue Nov 24, 2009 9:20 am

At least you are seeing some positive changes Joyce, its always a relief to see something positive however small it may be. (Just shows Steve is going in the right direction) Hopefully his body is overcoming the evil flu. Gosh what our poor bodies constantly have to battle.
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Postby wiggy » Wed Nov 25, 2009 7:00 am

I am just catching up here and so sorry - You both have been through so much the last few months - terrible.

I hope you recover quickly and I am praying for both of you.

Happy Thanksgiving Joyce
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Postby mormiles » Mon Nov 30, 2009 1:49 pm

Hey wiggy, Glad to see you on this forum. I hope you and yours had a terrific Thanksgiving celebration. Ours was very good. The food was fabulous, but the hour-and-a-half drive home did something to Steve's back. He's been in horrible pain that even oxycodone wouldn't help, plus his legs have been extra weak, so he's had a tough time walking any at all. He's better today, thank God, and won't go see a doctor about it. I'm thinking it was nerve pain, since the oxycodone wouldn't work.

Need advice from veterans, please. Steve's follow-up visit is December 10th. In case he might need further work after the imaging, should he get off the blood thinners and anti-coagulant? And if so, when?
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Mon Nov 30, 2009 2:37 pm

I did not. Dake never mentioned it and when you get your schedule of events, there is nothing in there that says too. I got off about a week before because of other issues, but I had to call Dake and get permission. I think you stay on it right up to the buzzer.
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Postby Arcee » Mon Nov 30, 2009 2:43 pm

And you ask the medical professional who is treating you...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Johnnymac » Mon Nov 30, 2009 4:22 pm

Thank you for this thread Joyce. I sent you a PM, its been nearly 3 years since we met online and you brought Steve to meet me at Carrabbas that afternoon.

Its encouraging to see that Steve is showing improvements! Best wishes!
-John
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Postby mormiles » Tue Dec 01, 2009 8:30 am

Hi John, Wow! I'm bumping into so many old friends here. Glad to hear that you and your sweetie are interested in CCSVI treatment. She is so young and so young in her MS---this could be very helpful for her. We look forward to meeting up with you two very soon.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mormiles » Tue Dec 08, 2009 1:55 pm

We fly out to California tomorrow morning for Steve's follow-up appointment on Thursday December 10. Steve has built back up to 13 minutes on the stair-stepper as he works his way to getting back on the recovery track after having H1N1 flu. Not worried about the 3 stents at all, but I'm hoping that his angioplasty has held.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby ozarkcanoer » Tue Dec 08, 2009 1:59 pm

I'm glad to see Steve is recovering from the flu and getting some exercise. let us know any news when you get home from Stanford !!!

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Postby Johnnymac » Tue Dec 08, 2009 2:03 pm

When you're back from Stanford and Steve is feeling better we need to get together and catch up :-)

Have a safe trip!
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Good luck Joyce and Steve

Postby Dovechick » Tue Dec 08, 2009 2:20 pm

Best wishes for a safe trip Joyce. I hope it is not too hard on Steve. I'm looking forward to the feed back when you return. Good to hear that Steve has recovered from the flu and is getting back to an exercise routine. Brill...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby mormiles » Fri Dec 11, 2009 10:50 am

We saw Dr. Dake yesterday for Steve's follow-up. Everything looks very good. The 3 stents and 1 angioplasty all look perfect, and there are clearly-defined, open jugulars where before the surgery, there had been a tangled mess that Dr. Dake called "soup." He was very disappointed that Steve's H1N1 had set back his recovery, but he was happy to see that Steve obviously was so much more aware and engaged than the fogged-out guy he had met before the intervention. Also, Steve's EDSS has dropped from 6.5 to 6.0.

Dr. Dake's enthusiasm and determination haven't flagged one iota, and he looks forward to treating more MS patients of every type only months from now. Don't ask me when...it was just that vague. Right now, he's all about preparing for and starting the study. Hang on everybody.

We will probably be incommunicado until Monday. Goodby for now.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Hip Hip Hurrah!

Postby Dovechick » Fri Dec 11, 2009 11:05 am

Joyce, so pleased to hear that things are good for you and Steve, its about time you got some good news. It is also good to hear that Dr Dake is full of enthusiasm for the Liberation procedure.
I'm hoping that Ella will be able to get her procedure done in the new year. I have not heard any more from Poland, after the initial reply, so I am going to have to be very patient and calm.
Get back to us when you can and tell all.
Hugs
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Yah for steve

Postby kc » Wed Jan 27, 2010 6:54 pm

Hi Joyce, it is kcapozza from cpn help. Steve's story was one that always stuck with me thru my abx years. I am so happy he has been liberated!!! I see people here write they had the flu after the procedure but I think that is mainly a die off effect from better blood flow., Although I realize steve had h1n1 after, maybe that was a blessing in disquise. (as in better that it happened after the procedure than before it)
I really wish the two of you soooo much luck with this, I hope my son finds a committed wife like you when he grows up.

I have an appt in NY so see a vascular surgeon on 2/4. I am hopeful, I stopped all abx about 1.5 yrs ago and am just now back to where I was when I started them. almost. I am concerned about kitkat as we used to also talk on the phone. She called me this last summer but I had to call her back and I have not been able to contact her. I hope she is ok.

But I am thoroughly impressed that steve already has his stents. yes!! zI personally think that our bodies need to go thru an entire year after the procedure to access improvements. Different seasons cleeanse diff organs. etc

hope all is going great for you two :D

kc
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