New and excited!

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

New and excited!

Postby Shannon » Tue Sep 29, 2009 6:14 pm

Count another MSer in on the CCSVI train! :D I am new to this site and have been reading messages here both today and about a week ago, when I first heard of CCSVI. I was reading the messages here today about people who have gotten calls and people who have been for the procedure already. It got me very excited! So, guess what? I just got off the phone with Dr. Dake!! :o I was not expecting a phone call so soon, as I just finished sending in my information this morning. However, I have not yet spoken to the insurance company or my PCP, who likely has never heard of this. :? I am not getting my hopes up yet about going, as I have Blue Care Network of MI as my insurance carrier and also I need a referral from my PCP for everything that I do. It seems like two mountains that I don't care to attempt climbing, BUT I do have the motivation that I need now to make the phone calls and try and make it happen. I checked into flights from Detroit and found some pretty great plane fares. Getting someone to go with me will not be easy, as I have 4 children at home that need to be cared for while I'm gone. I will start looking though! For the first time, I am able to say on an MS message board that I AM glad to meet everybody under THESE circumstances. I have some things such as numbness in my hands that have been there so many years now that I am sure are permanent. I look forward to my urinary issues, severe fatigue, cognitive problems, problems with memory, etc. to be much improved from the surgery. I look forward to sticking around here and reading the posts about others' experiences and posting mine as well. Thanks! Shannon
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Postby Sharon » Tue Sep 29, 2009 8:57 pm

Hello Shannon - Welcome to TIMS!
My goodness! -- You are on the TIMS for a week, send your information to Dr. D., have a phone consult and you are planning your trip to Stanford - a fast turning of events for you - congratulations. May I suggest that you be sure to read the "Stickies" at the top of the forum - educate yourself about the CCSVI theory and Dr. D's procedure. It is important to remind you that this is surgery - it is not pain free and there are risks involved. We "stenters" all went through the same inquisitive process before deciding on the the surgery. Ask questions - we are here to help answer.

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Postby CureIous » Tue Sep 29, 2009 11:29 pm

Welcome Shannon! Hope your insurance doesn't bog down. Tell em not to be a cog in the wheels of progress! You're experience sounds like mine, went from not knowing CCSVI to reading to phone call to fax to surgery in a very short period. I didn't cheat or nothing promise! Let us know if we can help you with any info and by all means, ask questions!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Loobie » Wed Sep 30, 2009 6:14 am

Shannon,

I'd just let Alex do all the insurance. They don't have a code for CCSVI, just venous headaches and edema and stuff. I'd let her do it all. If you call and allude to CCSVI it may raise questions that have bad answers for you. She did mine and did a fine job!
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Postby Jamie » Wed Sep 30, 2009 7:33 am

Agree with Lew!
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Postby Shannon » Sun Oct 04, 2009 1:54 pm

Thank you everyone for the advice. I will be following this site closely as I embark on this wonderful journey! Tomorrow is the day that I visit my PCP's office to request the referral needed for my insurance. She has no idea what I am coming in for, only that it is an MS-related issue. I am quite shaky about it actually, and will probably choke and not get the referral. My plan is to bring some papers about this (of course), and to tell her that I have already decided that it is the thing to do, for me, and that I came there to ask her to help me to get the insurance company to back me up on it. All I need is her referral to give this a go-ahead. Am I sounding desperate? Can someone please nudge me in the right direction here with how to go about presenting this to a PCP (not even a neuro!) without sounding like a kook? :-) Thanks in advance...you all are so helpful here!
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Re: New and excited!

Postby NHE » Sun Oct 04, 2009 5:00 pm

Hi Shannon,

Shannon wrote:Tomorrow is the day that I visit my PCP's office to request the referral needed for my insurance. She has no idea what I am coming in for, only that it is an MS-related issue. I am quite shaky about it actually, and will probably choke and not get the referral. My plan is to bring some papers about this (of course), and to tell her that I have already decided that it is the thing to do, for me, and that I came there to ask her to help me to get the insurance company to back me up on it. All I need is her referral to give this a go-ahead. Am I sounding desperate? Can someone please nudge me in the right direction here with how to go about presenting this to a PCP (not even a neuro!) without sounding like a kook?


You may want to take a look at the following threads if you haven't already.

NHE
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Postby catfreak » Sun Oct 04, 2009 7:26 pm

Hi Shannon!!

Welcome to TIMS!! I am 4 1/2 week out of surgery and things are coming together for me. Remember to read, read, read and ask, ask, ask!!!

Best of luck.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

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 CureIous » Sun Oct 04, 2009 10:59 pm

Shannon wrote:Thank you everyone for the advice. I will be following this site closely as I embark on this wonderful journey! Tomorrow is the day that I visit my PCP's office to request the referral needed for my insurance. She has no idea what I am coming in for, only that it is an MS-related issue. I am quite shaky about it actually, and will probably choke and not get the referral. My plan is to bring some papers about this (of course), and to tell her that I have already decided that it is the thing to do, for me, and that I came there to ask her to help me to get the insurance company to back me up on it. All I need is her referral to give this a go-ahead. Am I sounding desperate? Can someone please nudge me in the right direction here with how to go about presenting this to a PCP (not even a neuro!) without sounding like a kook? :-) Thanks in advance...you all are so helpful here!


Your PCP is probably intimately familiar with the problems that plague MS patients, and how few and far between any glimmers of hope are. You won't sound like a kook for trying to better yourself. While I am PPO and didn't face the same "day of reckoning" type feelings, I still wanted at least my GP on board, neuro would be a bonus. I got both to varying degrees. I'll take it.

You could start with a nice icebreaker like, "Hey, I want to do this radical new procedure, whaddya think?". Okay I kid. Not funny.

There is nothing wrong at all, whatsoever, with asking for help from someone who is there to help you, and most probably got into the profession to help people in the first place. Imagine the frustration so many GP's have dealing with MS patients (I was mildly shocked to find out my GP treated a LOT of MSers), and their subsequent inability to offer much more than the SOP, which aint much, but at least it's something. I remember when my neuro fairly tossed Provigil at my fatigue like it was no big deal. I thought "okay, that should work good then since he was so cavalier about it". Well when it did not a God blessed thing, I understood the cavalier part, since that was his ace in the hole and there WERE no other options. That's when I got it. Luckily my kindly pharmacist recommended only filling half of that very very expensive prescription, since I only used 2 pills and tossed the rest.

Now here you come in, (to the doctor's office) with something that even people who haven't a clue about MS, say makes perfect sense on first blush. Yes I am oversimplifying to the nth.

So perhaps something along the lines of, "I was wondering if possibly you could help me in pursuing this promising line of research into MS". HELP ME. That's the key here. After all, we are pretty much helpless right? (Yes I'm oversimplifying to the nth again).

You might even consider giving her this website since we have so much info consolidated.

I'll get the pompoms out tomorrow and give ya the perfect cheer. You will do just fine. The anticipation is worse than the doing. Keep in mind to stress that you are interested in correcting your malformed veins, wink wink. Probably wouldn't hurt to toss a couple Hail Marys, "Stanfords", Renowned cardivascular surgeon, cutting edge state of the art treatments, and the ilk in there for full effect. After all, you aren't telling her about some quack down at the corner market doing backroom meatball surgery.

Let us know how it goes right away!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Shannon » Tue Oct 06, 2009 9:36 am

Mark and all -

Thank you for the excellent advice, motivation and courage. I did see the PCP yesterday and everything went fine. She saw the connection immediately and said "So, there's a correlation, but what is it?" I immediately knew that I had her attention on this, so I talked about Alex and Dr. Dake and what it was that I was interested in doing. Her response was very positive and her concern turned to my insurance and how difficult an HMO can be. She said that they will want to know first what tests are needed, why they are needed, why the procedure is needed, etc. I told her that Alex wants to be in contacdt with her and my insurance company to work all of that out. She said that Alex could call her or send her anything that she needs and that she will do whatever she can. So, my end of it is pretty much at an end now and I wait for Alex to do her thing and get back to me! I will be chomping at the bit. :x
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Postby CureIous » Tue Oct 06, 2009 9:43 am

Shannon wrote:Mark and all -

Thank you for the excellent advice, motivation and courage. I did see the PCP yesterday and everything went fine. She saw the connection immediately and said "So, there's a correlation, but what is it?" I immediately knew that I had her attention on this, so I talked about Alex and Dr. Dake and what it was that I was interested in doing. Her response was very positive and her concern turned to my insurance and how difficult an HMO can be. She said that they will want to know first what tests are needed, why they are needed, why the procedure is needed, etc. I told her that Alex wants to be in contacdt with her and my insurance company to work all of that out. She said that Alex could call her or send her anything that she needs and that she will do whatever she can. So, my end of it is pretty much at an end now and I wait for Alex to do her thing and get back to me! I will be chomping at the bit. :x


I like your PCP. I especially like the ones that know they don't "got it all", and are willing to jump at the chance, seeing that the patient is 100% on board, ready willing and able. Hopefully Alex can get her magic wand out and just wave it and POOF! My first outpatient procedure at a hospital was a steep learning curve. Then of course when the bill came, they refer you to a dept 8 states away, not the first person you spoke with. It was a very bad experience for me. Almost like you have to get stuff from THEM in writing before you ever set foot in the door! Sheesh. I already told Alex we need to clone her, why not, you're in a research hospital, they can do anything!


You did splendidly. Please let us know the second you know anything!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CRHInv » Mon Oct 26, 2009 8:33 am

Hi Shannon, I just found your thread. How are you and what is going on now? Take 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 Shannon » Mon Oct 26, 2009 9:56 am

Hi - I am still eagerly waiting for something to happen. I tried calling Alex a few days ago and left a message asking if any progress was being made with the insurance company but I never heard back. I have been having bad days lately with fatigue and so I am praying that I will get the call. You are scheduled for surgery now, right?
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Postby mormiles » Mon Oct 26, 2009 9:57 am

Hi Shannon and welcome! My husband has Blue Cross-Blue Shield of MN---a high-deductible PPO plan. Alex checked it all out, and BCBS is paying for all of it. Just to be on the safe side, I asked my husband's neurotologist to write a prescription for the imaging and procedure if indicated by the imaging. Congratulations on not dragging your feet on CCSVI treatment. God bless you.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby MaggieMae » Mon Oct 26, 2009 11:44 am

Don't feel bad Shannon. We are still waiting too. Have sent "We are still waiting" e-mails to Alex. I know how you feel.
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