Waiting to hear from Alex!

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

Waiting to hear from Alex!

Postby magoo » Wed Sep 16, 2009 1:29 pm

Hello Everyone!
I am new here. My name is Rhonda. I have had RRMS since 11/03. I just found out Alex will be contacting me this week about getting an appointment with Dr. Dake. I am thrilled.
I also just heard back from my Neuro's nurse........he won't be supporting or referring me. Well, luckily you all have left this invaluable info here for me to draw from, so I knew that would be coming. I have to say I did hope he would surprise me and be more open-minded, but, oh well.
I have to say I am very excited by the CCSVI theory. Nothing has ever sounded so right to me. I am determined to move forward.
I am also very emotional since I haven't "hoped" in such a long time. Does any of this sound familiar? I feel a little out of control, but I also feel so very determined to go forward with this.
How big is this CCSVI Community? Is there an estimate out there?
Anyway, thank you to everyone here for all of the wonderful knowledge.
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Postby catfreak » Wed Sep 16, 2009 1:52 pm

Hi Rhonda,

Great to hear you are excited about CCSVI. I agree with what you said about how it just sounds right and you have hope. I was very emotional too. I think everyone hear will tell you it was worth whatever relief they received from the procedure.

Alex is just a real sweetie, so is Angela and Dr Dake is amazing!!

I think I was #34... I think.. Not sure how many actually post here.

Best of luck and please let us know what is going on in your journey.

If you need any questions answered you will get them answered here.

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 magoo » Wed Sep 16, 2009 1:58 pm

Cat,
Thanks. How are you feeling? I was just starting to read your story.
I grew up in the Bay Area and look forward to heading back. It will be nice to have friends and family to lean on too. Assuming I get that far!!
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Postby magoo » Wed Sep 16, 2009 2:04 pm

I know what I want to ask...
Do you stop your MS Therapies prior to CCSVI?
Thanks.
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Postby catfreak » Wed Sep 16, 2009 2:21 pm

Where do you live now?

I did not stop my Tysabri. I went Monday for my 7th infusion. No problems with it so I will keep doing it for a while.

I feel better today, my INR from the coumadin is 4.2 which is too high. I am looking for better days ahead.

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 mrhodes40 » Wed Sep 16, 2009 2:26 pm

Welcome Rhonda! Glad you found this. :D

Please read all you can this is experimental at this point in time. It takes a considerable amount of support for a new idea like this to qualify is proven, and that is why your doctor was relucatant--at this point we still need
1. more replication of the idea that MSers have stenosis and normal people do not (I think there is enough there to say we MSers do have it, and certainly an individual can see if they have it themselves, but only Zamaboni has large blinded controlled trials showing normals do not- we need other researchers to replicate that)

2. release of the full data on the relatively few people treated for stenosis so far and their outcomes

3. repetition of the treatment research on larger numbers.

We can't expect most doctors to support this at this point it is too preliminary for them to feel it is something they'll start referring patients to.

But as far as where we stand on those shortcomings listed above:
1. Jacobs is doing a gargantuan replication including more diagnostics, even than Zamboni did, with results expected to be trickling in over the next year and a total number of patients tested being 1700 8O ...wow!

2. full data on the first treated group should be out in October with the second group already nearly a year in to treatment.

3. Dr Dake has already treated roughly 40 people starting last May. These people will have their results documented.

So this is a good way down the path towards acceptance even though it is not proven at this time.

But I am happy you have made the step to be evaluated. If you have failed traditional therapies it feels so good to hope again!! I am happy for you! My own treatment was very welcome for the same reason, I had all but given up that anything would happen in my lifetime the regular stuff just seemed to be going in circles, and I was like "yeah, heard it all before"...now I am happy to know that no matter what else comes out over time, my circulation issues have been addressed. It just seems to me that can only be helpful.....
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 magoo » Wed Sep 16, 2009 3:14 pm

Thank you mrrhodes! Your explanation helps me understand my neuro a little better. I am truly hopeful. I plan to take this as far as I can.
Cat, I live near Charlotte, NC now. I just finished your story and I hope you have recovered from the trip. Can you tell me what coumadin is?
I know I have much to learn.
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Postby catfreak » Wed Sep 16, 2009 3:53 pm

Rhonda,

Coumadin is the Blood thinner Dr Dake puts us on to keep the blood thin and flowing. But it can get to thin like mine and the meds have to be adjusted. I think we all have had our ups and downs with the coumadin.

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 » Wed Sep 16, 2009 5:43 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:44 pm, edited 1 time in total.
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 Jamie » Wed Sep 16, 2009 9:00 pm

Well you've certainly washed up in the right corner of the internet!

Everything you need to know is here, plenty of people been through it etc.

If you ever need anything feel free to PM me, my missus had the surgery over two months ago and hasn't looked back since!
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Postby MaggieMae » Thu Sep 17, 2009 6:51 am

We still have not heard from Dr. Dake. Talked to Alex on two different occasions back in August and once the first week in September, but no call from the Doc. I faxed her insurance information and notes/reports on my husband. Do you think there are those with MS that they are not accepting?
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Postby Jamie » Thu Sep 17, 2009 6:58 am

Squeeky wheel Maggie.

It took us weeks to get Mel's follow up sorted - they are simply swamped.

Only one man doing the surgery don't forget.
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Postby zap » Thu Sep 17, 2009 7:54 am

Yeah, it too me months to get from first contact to setting a date. They won't forget you, but it may take a bit.
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Postby catfreak » Thu Sep 17, 2009 8:06 am

Jamie said:
It took us weeks to get Mel's follow up sorted - they are simply swamped.


I started trying to get my follow-up immediatley after my procedure. Trying to get my name in a slot somewhere...

It just takes time. I am an impatient Cat as you can see in my picture!!

Cat :lol: :lol:
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 magoo » Fri Sep 18, 2009 5:54 pm

Thank you, thank you, thank you!

Such good information. I can't tell you how much I appreciate it. I have been reading as much as I can and emailing my family like crazy. Everyone is onboard, especially my husband. Thank goodness!

I have been an email squeaky wheel this week with Alex. I understand it will take time. but I am anxious. I will have to learn to pace myself.

I've had RRMS for 6 years now. I've been on Betaseron, Tysabri, and Copaxone (currently). I am 41, happily married with two great boys (7 and 10). I am unfortunately, disabled. Balance, tremor, fatigue, pain, spasticity, numbness, weakness, dizziness, and migraine are my daily demons. As I read about losing bits of your life slowly and steadily.....I can relate.

I feel POSITIVE I have to be proactive about following through with the CCSVI testing. I have nothing to gain by sitting still and waiting. So I will go to Stanford and see Doctor Dake as soon as possible.

Be Well Everyone :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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