Steve's Turn: waiting for the call

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

Steve's Turn: waiting for the call

Postby mormiles » Tue Jul 21, 2009 10:06 am

All the records and other documentation have been sent to Alexandra, we've already had our introduction by phone, and we've been exchanging e-mails. Now, we're just waiting for the call.

Can the wheels of healing be more excruciatingly slow??? Of course they can be---like for healing that's never dreamt of, like for healing that never comes.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Tue Jul 21, 2009 10:18 am

Joyce-
So glad that you were able to get Steve's info to Stanford. I understand the impatience....hang in there, and all good thoughts and prayers go to you both.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Tue Jul 21, 2009 10:50 am

Joyce and Steve - This is exciting news...waiting can be the hardest part of the journey...
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Postby mrhodes40 » Tue Jul 21, 2009 11:01 am

Joyce I am so glad Steve has made the decision to be evaluated for this anomaly!! I am so pleased for you both!! fingers crossed..
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mormiles » Tue Jul 21, 2009 12:42 pm

Thanks cheer and peek. Marie, as I told you in a PM weeks ago, Steve was not open to doing anything new...so much so that he wouldn't even hear information about CCSVI. Finally, he capitulated and agreed to go, because his adamant refusal was depressing me so much. Well, that was not okay with me.

Steve wanted to wait and talk to his neurotologist at an appointment scheduled for 7/13 before pursuing CCSVI evaluation and treatment, though. Sadly, his father passed away on 7/10, and we had to be in Schenectady, NY for the funeral on 7/13.

After the funeral we were speaking to Steve's sister's best friend, an RN who has recently been working for a neurologist who specializes in MS treatment. The friend (M) already knew about CCSVI and was not only very interested in it, but very excited about it too. The next morning Steve asked me to go ahead and make the appointment with Dr. Dake. I was flabbergasted! He's finally on board and interested!

While we were in the northeast, we also visited Steve's grown daughters in the Boston area. The youngest daughter's partner works for an interventional radiologist and was also very interested and excited about the prospect of CCSVI treatment. Now Steve is even more interested!

I was also able to get a referral to Dr. Dake from our neurotologist even though Steve's next appointment will not be until 8/4. Thank you, Lord, for the wonderful help you've provided!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby peekaboo » Tue Jul 21, 2009 1:53 pm

This was no accident :)
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Postby mormiles » Tue Jul 21, 2009 2:12 pm

Amen!!!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Ships passing

Postby mormiles » Thu Jul 23, 2009 11:15 am

He called yesterday and we missed it! And now he's going to be out of town the rest of the week. Drat!!! I was very impressed, though, that from the message he left, he had just received Steve's records yesterday and had already reviewed them. WOW.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Connection

Postby mormiles » Tue Aug 04, 2009 5:10 am

At last! After four attempts over the past couple of weeks, Dr. Dake reached us at home last night. The ball is rolling---now we just need to set a date with Alexandra. Now, since speaking with Dr. Dake over the phone, even Steve is showing some excitement, albeit in his tentative, low-key way. Me? I'm way over the top.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby ErikaSlovakia » Tue Aug 04, 2009 5:38 am

Excellent!
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Postby Needled » Tue Aug 04, 2009 5:51 am

This is so exciting -- I can't imagine how you all feel. Looking forward to your updates.
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Postby peekaboo » Tue Aug 04, 2009 8:07 am

I am going for my check up on Aug 13/14 if you guys get appts. around then lets hook up.

Holly
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Postby Sharon » Tue Aug 04, 2009 8:14 am

Great news for you and Steve. The time seems to being going slowly, but you will be in California before you know it.

Sharon
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Postby catfreak » Tue Aug 04, 2009 9:41 am

Hey mormiles,

He (Dr D) called me yesterday also. Isn't he so nice and he talked to me for at least 30 minutes or more. Complimented me on the history I wrote up and said it answered a lot of the questions he would have had to ask me otherwise.

This is awesome for all of us. The sooner the better for me now that I have had a chance to speak to him.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mormiles » Tue Aug 04, 2009 10:37 am

Thanks everyone. I just want to scream this news to the world, so it's a good thing this forum exists. I want to hookup with anyone who'll be there at the same time we go...whenever that will be.

Today Steve will see his neurotologist who gave him the referral to Dr. Dake. I can hardly wait to hear what he thinks about all this (I value his opinion greatly). Or maybe he'll just say that he had to give Steve the referral to get me off his back. Either way, I'm looking forward to Steve's next appointment with him even more. I imagine he'll have an opinion once he sees Steve a few months post-op.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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