A CCSVI Patient Log: All About Steve

[CRHInv]

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

[LR1234]

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.

[wiggy]

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

[mormiles]

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?

[Loobie]

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.

[Arcee]

And you ask the medical professional who is treating you...

[Johnnymac]

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

[mormiles]

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.

[mormiles]

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.

[ozarkcanoer]

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 !!!

ozarkcanoer

[Johnnymac]

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

Have a safe trip!

[Dovechick]

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...

[mormiles]

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.

[Dovechick]

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

[kc]

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

kc