My test results and visit with Dr. Dake

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

My test results and visit with Dr. Dake

Postby prof8 » Wed Dec 09, 2009 6:52 pm

Wow. Today was thoroughly overwhelming. I had the MRI and MRV test done and then a consult with Dake. He sat and talked to me and my husband for almost 2 hours. Both my lower jugular veins are occluded by about 90-95%. They are essentially pancaked flat. If you look at them layer by layer in flair cut pictures (slices) by the time you get to the bottom they virtually disappear on the screen. The upper left jugular (very high up) is also somewhat occluded. And there is some other vein high up on the left that looks not quite normal either (I can't remember what it is...near my sinus??). Dr. Dake was surprised I didn't have more fatigue than I do or even more problems. I told him I think it is the Tysabri. I noticed a huge improvement in energy when I had been on it at the 6 month mark. By the way my disability level is only 1.5 but I have cognitive issues and abnormally low blood pressure (95/57).

Anyhow, it was a let down not to have the option to get the surgery after
seeing what I saw. Overall it was emotionally exhausting. But I'm glad I
have the info in hand. And he said I would be at the top of the list for the
trial.

Dake is hoping the trials will start in January. They will either go 4 months or 6 months. Half will get surgery and half will not. At the end of the 6 months everyone in the trial will get to have the surgery. He seemed to think since my disability is low and I have cognitive, fatigue, heat issues he would expect a dramatic difference in how I feel after getting stents. He has been talking to the FDA and has a stent company lined up that will probably provide the stents since technically doctors use the stents "off label" or "off design" when they go in veins instead of arteries (even in non MS patients).
Last edited by prof8 on Wed Dec 09, 2009 11:43 pm, edited 2 times in total.
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Postby jr5646 » Wed Dec 09, 2009 7:17 pm

Glad to hear your veins are a mess... :D Relief is in sight... relax and enjoy the holidays... you deserve it !!

Thank you so very much for posting this wonderful news... these last few days have been a roller coaster ride... phew...

I'll have no problem waiting now... hell, I'd even volunteer to be one to wait the 6 months - just to know that we could possibly get some help, will be enough to get me thru..

I'm so grateful and hopeful now too...

THANKS !!!!!!!!!!!!!!!!!
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Postby ozarkcanoer » Wed Dec 09, 2009 7:22 pm

prof8 - Thank you very much for sharing this with us. I agree 100% with jr5646. I can barely think now with all the headaches and fatigue. It's like I am thinking through mud. prof8, you are going to get liberated, and maybe, maybe, maybe I will get liberated too !!
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Postby CRHInv » Wed Dec 09, 2009 7:49 pm

This is wonderful news! I am so glad you have stenosis and it looks like something he can fix. I am also so pleased to hear the trials may start so soon. I want the relief I am feeling for everyone!
Thanks again for letting us know!
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 prof8 » Wed Dec 09, 2009 8:14 pm

I forgot to add that you can still stay on all of your MS drugs while in the clinical trial because it's not a trial for MS per se. It's a vascular trial to see what happens if you fix stenosis using stents in the veins.

It seems weird to see people congratulating me for having blocked veins! I think a part of me was hoping nothing was really there only because the idea of blood thinners, surgery and having foreign objects in my body scares me. Actually I didn't think I would be as clogged as I was! But I guess it's good I know what's there and hopefully I really will get in the trial. I told him as I left to sign me right up!
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Postby CRHInv » Wed Dec 09, 2009 8:50 pm

prof8 wrote:It seems weird to see people congratulating me for having blocked veins! I think a part of me was hoping nothing was really there only because the idea of blood thinners, surgery and having foreign objects in my body scares me.


Prof - I did the opposite. I was awake all night, which was super weird, hoping he would find something. If it wasn't this I just didn't know where to look next. I have my fingers crossed for you that this will bring good things.
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 Katie41 » Wed Dec 09, 2009 8:51 pm

Congratulations! Great that your veins are pancaked and there is now a fix for it!

Wow! You came away with great info. Good news that all in the trial who didn't get the stents will receive them after the trial is completed. Thanks for posting it.
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Postby Rokkit » Wed Dec 09, 2009 8:57 pm

Congratulations! I'm so glad you went!
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Postby CureIous » Wed Dec 09, 2009 9:20 pm

Most excellent news. We've been congratulating each other for quite awhile now lol. Yeah, it's kind of weird. So glad you went through with it, you can take the woulda/coulda/shoulda now and make it a been-there-done-that in the future. It surely is a relief is it not to hear those words about what is wrong? I know for us there was quite a bit of fascinating talk first about BBB and the science behind it, worth the entrance fee just for that alone, and the talk about the actual stenosis came after that as almost an afterthought lol. "So do I have stenosis?" "Oh yeah you sure do no question about it" haha. Phew. I think that's great the way they are doing it, making controls within the "getting fixed" group. It's win/win.

After all that talk about how to do it, fake surgeries and the like, I think that is by far the most ethical solution to the dilemna. Ya done good...

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 jr5646 » Wed Dec 09, 2009 9:28 pm

prof8 wrote:I forgot to add that you can still stay on all of your MS drugs while in the clinical trial because it's not a trial for MS per se. It's a vascular trial to see what happens if you fix stenosis using stents in the veins.

It seems weird to see people congratulating me for having blocked veins! I think a part of me was hoping nothing was really there only because the idea of blood thinners, surgery and having foreign objects in my body scares me. Actually I didn't think I would be as clogged as I was! But I guess it's good I know what's there and hopefully I really will get in the trial. I told him as I left to sign me right up!


Thanks, I was going to ask you about the meds... I'm praying to get in the study AND for blocked veins - :lol:

Seriously though, I'm at about a 6 EDSS so, just please trust me when I tell you don't want to go there - avoid it at all cost, it's really awful... very difficult to explain, too...

I realize this will be a scary thing to do... and I'm sure it'll be difficult to go through but hang in there... I'll be pulling for you !!!

I got some really bad advice when I was first DX.. I unfortunately went to a local MS Society chapter meeting (still fresh with denile and with very minimal and visable symptoms).. seeing all the folks there so freaking disabled nearly gave me a heart attack.. I think I still have nightmares about it to this day..

Anyway, hope to see you in SF !!!!!

Oh, another question... Did Dr. Dake happen to say how many in the study?

THX again for sharing, I really appreciate it..
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Postby prof8 » Wed Dec 09, 2009 10:30 pm

Yeah Mark, the funny thing is Dr. Dake loves to yap (which is a good thing) He and my husband were just chatting up a storm about the BBB, creeping T-cells/B-cells, neurologists in general, reading radiology reports, looking at MRI's, on and on and on. It was like an onslaught of encyclopedia information. I really liked him. And trust me, I've seen LOTS of doctors all over the place, including the Mayo Clinic, and I thought he was one of the best. He seemed so excited with what he found on my MRV/MRI and pumped up to do this study.

I have to tell you one funny thing -- Dr. Dake did say that some neurologists keep pushing him about the placebo effect in these surgeries and he said something like "well, they think the placebo effect is so strong in MS patients because they just believe MS minds are so messed up." Ha ha ha. Basically he was suggesting that not all neurologists actually take the MS patients seriously and think they will imagine stuff. I liked that he listened to what I had to say and asked very detailed questions about everything.

I feel like there is more to tell but I just can't remember it all. But if you ask a question it will probably come to me. He did not say how many people would be in the trial. I should have asked him -- sorry about that...Oh, I just remembered that he said he has to do a different kind of study (doctor sponsored not pharmaceutical or company sponsored) which means he has to go through the FDA and find a company to make stents specifically for the study. I guess since technically, as a doctor in a doctor sponsored study, he can't use stents in a study on venous stenosis since stents are solely designed for arteries (even though they are always used off label, just like thousands of drugs are). He said he has contacts in the FDA and now had made a deal with this one stent company (can't remember the name) who will supply the stents for free specifically for this purpose. Who knows, maybe he will patent another stent just for the jugulars!

jr5646, I'm sorry you got the crap scared out of you at a MS society newbie meeting. I purposefully avoided those because I was afraid of the very same thing. I feel very lucky that I haven't progressed in the past 2 years and 4 months since diagnosis. I have been on Tysabri for awhile and I really think that is what is saving me for now.

Anyhow, if I think of anything else I will let you all know.
Last edited by prof8 on Wed Dec 09, 2009 11:11 pm, edited 1 time in total.
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Postby prof8 » Wed Dec 09, 2009 10:47 pm

Oh, I forgot to mention: Dr. Dake kept saying as he pointed out my jugular veins, "this is not normal "this is not normal!" :lol: He said I had so many collateral veins trying to make up for the lack of flow that it looked like spaghetti in the back of my head/neck.
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Postby CureIous » Wed Dec 09, 2009 11:50 pm

prof8 wrote:Oh, I forgot to mention: Dr. Dake kept saying as he pointed out my jugular veins, "this is not normal "this is not normal!" :lol: He said I had so many collateral veins trying to make up for the lack of flow that it looked like spaghetti in the back of my head/neck.


Oh he did the same with me, kept pointing at my head though lol. Okay I'm kidding. Good report. Our intial consult was like that too, very relaxed, why, you would have thought you were the only person he talked to that day inside the "fishbowl" as I call it. Very good report though. Yup, thats him alright. I was kinda disappointed on my follow up though, as was ready to talk turkey til the wee hours but it ended up being so late and we had to talk about doing a 2nd procedure or not and that ate up most the time. Drat! lol. I need my quality time!
So how do you feel about seeing all of that and the consult? I know your head is spinning with all the new info, but now that the black/white is right there, does it "feel" more real??? Can you sense the light at the end of the tunnel named hope? I mean seriously, you got broken leaky pipes and they're gonna get fixed! Okay I'm getting too excited for you haha.

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 bestadmom » Thu Dec 10, 2009 5:56 am

Here's yet another congrats on your spaghetti collaterals. Mine are a haircutter's dream! I hope that since you've spent so much time with Dr. Dake, your fears are gone. I hope his trial begins swiftly and you are #1.

Thanks for sharing so much of what you learned. Especially the comment about those nice neurologists at Stanford saying MS minds are messed up. Maybe it's the poisons they are trying to kill us with that is doing it.
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Postby Needled » Thu Dec 10, 2009 6:45 am

So glad you went and now you know there is a problem and it can, and will be, fixed. Congrats! And a huge thanks for passing on all the info. :D
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