Notes from CureIous' at Stanford

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

Postby coach » Thu Aug 04, 2011 12:20 pm

So it appears that there are those patients that were treated by Dr. Dake are seeing him for a two year follow up. Any Insurance problems? Even though Dr. Dake gave me the name of a doctor closer to where we live, my husband thinks the smart thing to do is to go back and see Dr. Dake.
Sounds good to me. If it's not broke, don't fix it. I continue to have struggles and am not as good as I was immediately after the procedure in 2009. Didn't have stenosis in high jugulars, but low jugs and azygous. How far in advance does one need to schedule with him since I know he is a very busy man?
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Postby esta » Thu Aug 04, 2011 1:29 pm

cece, i haven't a clue what tool they use, and i would never have thought to even ask.
gawd i feel so mindless, yet, the pacific clinic intuitively so far works for me...yes, if i didn't have ppms and was younger, i'd wait - no long though- better half done than not.
i read everything you write, so rock on...
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26/08/10 stent RJV
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Postby CureIous » Thu Aug 04, 2011 3:36 pm

coach wrote:So it appears that there are those patients that were treated by Dr. Dake are seeing him for a two year follow up. Any Insurance problems? Even though Dr. Dake gave me the name of a doctor closer to where we live, my husband thinks the smart thing to do is to go back and see Dr. Dake.
Sounds good to me. If it's not broke, don't fix it. I continue to have struggles and am not as good as I was immediately after the procedure in 2009. Didn't have stenosis in high jugulars, but low jugs and azygous. How far in advance does one need to schedule with him since I know he is a very busy man?


You won't have any problem getting in as far as scans go, can't speak for the procedures and such. I changed my appt. at least 3 times because my work kept dragging on and it wasn't a problem. Since my insurance is the same, don't anticipate any issues in that regards. Still digging through this CD, it's quite extensive. Dake's commentary to me about that area in question was more along the lines of, "if you were having issues, this would be the first area to investigate". You sound like a good candidate for some IVUS investigation(s), is that something on the table? Do you anticipate any kind of follow up procedure? I was intrigued that he zeroed in on the valve specifically, and now I can't recall the comment he made specifically about me but I believe that I had 3 or 4 valves. I need to write him to clarify because our visit was so rushed (not by him by me). Still kicking myself for listening to Supershuttle, at first they wanted to pick me up at 3:30 for a 7:00 flight, I said no, make it 4:00 so I could get as much consult as possible, but at 6-7 p.m. SFO just isn't a teeming cauldron of activity, I had enough spare time to take a ferry to Angel Island if I wanted. Ugh.

Keep us posted Coach.
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 Cece » Thu Aug 04, 2011 4:27 pm

esta wrote:cece, i haven't a clue what tool they use, and i would never have thought to even ask.
gawd i feel so mindless, yet, the pacific clinic intuitively so far works for me...yes, if i didn't have ppms and was younger, i'd wait - no long though- better half done than not.
i read everything you write, so rock on...

You too...in discussing this today, I saw in your footer that you had ppms, I hadn't known that.

If you read everything I write, I must keep you busy. ;)

I thought maybe they were using a special tool or a cutting balloon for the valves but most likely they're just ballooning real fast, which can pop the annulus or ring of the valve, as opposed to slow and gradual, which is less likely to pop the annulus.
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Postby Cece » Thu Aug 04, 2011 4:39 pm

I was intrigued that he zeroed in on the valve specifically, and now I can't recall the comment he made specifically about me but I believe that I had 3 or 4 valves.

I wonder how common or uncommon that is? I had two valves in my right jugular (and a valve in my left and a no-kidding actually functional valve in my azygous).
What a day though. Had this nagging thought in the back of my head to put one of Marie's books in my carry on and a copy of my video.

You sure do keep spreading the word!
I am looking forward to the day when everyone has heard of it. They might still need you (or any of us) to set them straight about misinformation but at least they'd heard of it.
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Postby ErikaSlovakia » Fri Aug 05, 2011 1:52 am

Cece wrote:
esta wrote:...If you read everything I write, I must keep you busy. ;)


Cece, you keep me busy as well :)
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby CureIous » Fri Aug 12, 2011 11:36 pm

okay, getting back to the "notes from Cureious at Stanford" part of this thread, wanted to post up my homemade MRI comparison shots, as best I was able to identify slices that were the same or close, no way to get it perfect as slices are always going to be different in every MRI.

Frankly, the new 3T program befuddles me, there's so much stuff on there and it's hard to figure out what's what anymore.

Anyways I started with the first comparison shot posted last year, with probably TMI on there but you get the point.

Image

For further posterity, I also am posting the next 5 images in that sequence so you can follow that particular "hole" as it moves on up to the (vasculature?). I dunno, thought it was interesting. Don't know if screwed up stuff in your brain can be considered "neat" so I'll say interesting. Hmph.

Image
Image
Image
Image
Image

Hopefully I'll get a path report with all this claptrap. 8,400 images, why I can't even get my kids to sit still for ONE picture....

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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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Sep 22, 2011 9:29 pm

Hi all. I see on my DVR program guide that there's no Montel on OZ next week, unless it's a cameo and not noted in the guide, but doubt it will be on this month as we were led to believe. Soon enough, soon enough. Anyways, stents still doing their job thru the third straight summer, and frankly just too busy to even think about health stuff that much, which is much better I suppose than constant hand wringing over vein status and current state of symptoms, since their just aren't any I can point out.

Went to see a new doc on totally unrelated matter, and during the course of our initial meet-and-greet visit, my med history was queried, and oh boy is this Doctor INTERESTED or what in the CCSVI stuff. As mentioned in another thread, I brought him a copy of Marie's book, and her latest note as a nice adjunct to that, and the link to the Dr's thread on here. I've never seen anyone take off so fast, it's ME who's slowing HIM down lol. There was a colleague from Iran who happened to be visiting, and thru my Doc, CCSVI is going back there too. By the time we got to the next appointment, he showed me a flyer he hands to ALL of his patients, not just the MS patients, but in case they even know someone with MS, he hands it to everyone. Real go-getter I guess. He also found the Vegas symposium deal and is attending he sure has a lot of get up and go.

Just get the info in their hands and point them in the right direction, the rest is beyond our ability to control. Control is getting to be a big issue is it not? Fact of the matter is, most of what we like to think is controlling the stream of thought, or direction in this, is mere illusion. People are going to do, what they are going to do, how they are going to do it despite our best efforts. CCSVI may just be a glimmer of hope, but that's still better than complete darkness and a future in despair, which I venture to say, is what most of us face at one time or another in the course of this disease. "Positive outlook meets reality", and sure, we can learn to cope, to balance, to offset and ameliorate our circumstances and shortcomings, but at times those scales seem to be weighted down plenty on the opposite side.

So a little glimmer here and there, can't hurt I guess.
Last edited by CureIous on Thu Oct 13, 2011 10:45 am, 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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Re: Notes from CureIous' at Stanford

Postby cheerleader » Thu Sep 22, 2011 9:58 pm

CureIous wrote:
Went to see a new doc on totally unrelated matter, and during the course of our initial meet-and-greet visit, my med history was queried, and oh boy is this Doctor INTERESTED or what in the CCSVI stuff. As mentioned in another thread, I brought him a copy of Marie's book, and her latest note as a nice adjunct to that, and the link to the Dr's thread on here. I've never seen anyone take off so fast, it's ME who's slowing HIM down lol. There was a colleague from Iran who happened to be visiting, and thru my Doc, CCSVI is going back there too. By the time we got to the next appointment, he showed me a flyer he hands to ALL of his patients, not just the MS patients, but in case they even know someone with MS, he hands it to everyone. Real go-getter I guess. He also found the Vegas symposium deal and is attending that. For a 60+ year old doctor, he sure has a lot of get up and go.


Great job, Mark--please have your doc friend stop by to say hello to me and Sharon at the CCSVI satellite meeting- would love to meet him. here's the invite
http://events.r20.constantcontact.com/r ... ac41373e22

So glad to hear your health is good and your life is just cranking along. Be well, Mark-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Oct 28, 2011 12:47 pm

Hi all, just wanted to brush up on a few things, nothing major, but important to me I guess. Just finished my third summer in the heat, and am crushed the cold has come on so quickly, as it impinges on the girls swim time in the pool lol.

As mentioned on another thread I think about the Vegas conference, a Dr. I had been seeing recently on an unrelated matter, had shown much interest in CCSVI, as it came up during the course of our visit. He simply cannot get enough info. I think I created a monster, and to boot, he is of Persian descent, and I love Persian people, such a rich and ancient history, intelligent, funny and caring people are all I have ever known when it comes to Persians.

After all the initial "info break-in", and links and Marie's books etc. he took it upon himself to start handing out flyers to all his patients. Not my idea, but if that's what he wants to do... I try very hard to bring up the possible complications and keep those at the fore, to make sure he is highlighting those in equal measure along with possible bennies. He did in fact go to Vegas for the conference, but arrived too early, and was feeling under the weather, and decided to come home instead of waiting until the 5 pm start.

He has had two recent patients, one has MS, the other was dx'd with stroke related dementia. The MS one he is sending to Stanford of all places for an MRV. Hey not my idea either, and I'm relaying second hand info here so don't shoot the messenger, but hopefully they'll get the Dake protocol at least. Little fuzzy on the details on that one so if anything else comes up info wise I'll pass it on.

The other patient though, is intriguing, a fellow Persian, so they talk to each other in Farsi, and here's this young guy who was dx'd by the neuro with a stroke, and is now *apparently* suffering from dementia. At least that's how the neuro basically wrote him off. Now he comes in to see Dr. O, all fresh out of CCSVI school so to speak, and Dr. O is talking to him, and realizes this kid (I think he's 30 something), is hardly suffering from dementia at all, (well perhaps I should say, "is not solely suffering from dementia) because during the course of conversation, Dr. O was noting that contrary to dementia, the patient was thoroughly conversing in the here and now. However, said patient intimated something that I myself am intimately familiar with, and perhaps some of my fellow cog-foggers can relate, insofar as you have all this "stuff", (thoughts, ideas, things to say etc.) bouncing around in your head, but for some reason, you are incapable of communicating those things, it's like the train is on the track, but is chugging around in circles instead of arriving at the destination. I know exactly what that feels like, a mental block, but not in the way we think of memory-wise, but rather "all the good stuffs right here, I just am incapable of showing it to you verbally". Like I said, you cog foggers know what I mean, everyone else, this will seem a little out there.

So there he is, the patient, saying "look, I'm still here, and there's just no way I can explain it to you, the thoughts are stuck in my head". Patient is suicidal too. Hey, lot of us have been there, it sucks when you are stuck inside your head and cannot get out. When all the neuro can do is monitor you, make a note on the chart and send you home, no better, no worse.

Dr. O is thinking this may possibly be a missed MS dx, am again, I'm relaying second hand info here, and am not sure about how concrete all the stroke stuff is, or if it was inferred that he had one based on current symptoms, just don't know.

But, at that particular time of day, Dr. O just happened to have his ultrasound guy on hand, and did a UT on his IJV's. Both were blocked with inferior flow. Dr. O sent the UT to a fellow radiologist to take a look, and he too had a couple of raised eyebrows, saying he had, "never seen anything like this before", and I'm guessing that's in regards to the IJV's being blocked/slow flow alongside the presentation of the patient.

Now think about it, here you are, a patient, you've done all you can, followed the program like a good little patient, gone to your neuro, who I'm sure did an MRI, and possibly found something and inferred stroke or whatever, but then you aren't recovering or improving, life is a downhill slide and you are literally "losing your mind". Would you want someone to come along and say, "hey, no promises here, but there is one thing we can look at if you are interested". That's a no-brainer.

Anyways, as of this week, the patient is heading to our good friends the Hubbards, and I hope can find some answers there. Perhaps his problem was CCSVI all along, perhaps not, but I guarantee you this, without any more inside knowledge, there's a glimmer of hope out there for this suicidal gentleman, he is a victim of his own body so to speak, and the suicidal tendencies are merely a symptom of a larger physiological problem, and if that can be "fixed" or ameliorated, why all that suicide crap goes right out the door, healthy veins, healthy minds, right?

Promise to update if/when I get more info, Dr. O is very interested in touring the Hubbard's facility, and while he himself is not interested in procedures anymore, having done plenty himself in various sub-specialties including neck veins, he is by far one of the most charismatic, indominitable and positive people I've ever met. He really does want the very best for his patients and is not gunshy to do whatever it takes to achieve just that for them, even if there is no profit to be made on his end. Plus he has a very extensive network to boot, and sent CCSVI back to Iran with a visiting Dr. I'm proud to know him...

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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Re: Notes from CureIous' at Stanford

Postby blossom » Fri Oct 28, 2011 5:42 pm

cure1ous, what a great thing to hear. thanks for shareing. wish we could have this dr. you speak of cloned. the world certainly could use more like him.
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Re: Notes from CureIous' at Stanford

Postby CureOrBust » Fri Oct 28, 2011 6:43 pm

CureIous, thanks so much for letting us know of your progress. I could understand if things are so well, it seems coming back here would serve you no purpose. But it gives the rest of us soooo much hope. Remind me, how long did you have MS before your treatment? and were you RR, SP or PP?
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Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Dec 23, 2011 1:01 am

Hi all, don't really like to bump my thread for chit chatty stuff not related to any developments or updates but the subject matter isn't really worthy of a new thread either.

Been meaning to broach this for some time, but it's more of a highly personalized experience and something I consider germaine to CCSVI related improvements for lack of a better explanation, and would be interested to know if anyone else has similiar experiences I guess.

I am amazed beyond description, at the latent memories stuck inside my brain. I know we talk about short term recall alot, and that's certainly improved immensely, but starting about, let's say 6 months and especially at about the 1 year+ mark post treatment, I get these incredibly vivid memories that come back, of where there used to be just a general outline if anything, and I mean going back to childhood, adulthood and everything in between. Most aren't particularly poignant nor memorable, I'm not talking about significant events either, just plain garden variety stuff.

However, the clarity, and the vividness are in and of themselves, remarkable to note. EVERY DAY it's something new, and jarred by the most innocuous things, sometimes even certain colors, or jingles, or smells. Suddenly it's like someone hit play on the VCR and this entire scene unfurls, and I recall words spoken, and thoughts I had at the time, or feelings, or whatever, the level of detail is like looking at an old photo album, or you know how you hear a song or whatever and it "takes you back"? Well it's that times 10, and it's not sought after either, it just POPS in unannounced and just like that is gone. I don't know if it's odd, or pleasant, or unpleasant, it just IS.

I've had the thought that this is spurred by (naturally) increased or reestablished blood flow nourishing whatever areas all that stuff was stuck in. No, not losing it, no, not pining for days of yore, would be curious whether anyone else has similiar experiences too I guess. All I know is, when I used to rewind back on purpose, there would be a certain amount of memories and that was it, nothing else. Now, boy oh boy, all I can say is, the human brain is really REALLY an incredible invention... ;)

Hope that didn't come off too creepy lol.
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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Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Dec 23, 2011 11:24 pm

CureIous wrote:The other patient though, is intriguing, a fellow Persian, so they talk to each other in Farsi, and here's this young guy who was dx'd by the neuro with a stroke, and is now *apparently* suffering from dementia. At least that's how the neuro basically wrote him off. Now he comes in to see Dr. O, all fresh out of CCSVI school so to speak, and Dr. O is talking to him, and realizes this kid (I think he's 30 something), is hardly suffering from dementia at all, (well perhaps I should say, "is not solely suffering from dementia) because during the course of conversation, Dr. O was noting that contrary to dementia, the patient was thoroughly conversing in the here and now. However, said patient intimated something that I myself am intimately familiar with, and perhaps some of my fellow cog-foggers can relate, insofar as you have all this "stuff", (thoughts, ideas, things to say etc.) bouncing around in your head, but for some reason, you are incapable of communicating those things, it's like the train is on the track, but is chugging around in circles instead of arriving at the destination. I know exactly what that feels like, a mental block, but not in the way we think of memory-wise, but rather "all the good stuffs right here, I just am incapable of showing it to you verbally". Like I said, you cog foggers know what I mean, everyone else, this will seem a little out there.

So there he is, the patient, saying "look, I'm still here, and there's just no way I can explain it to you, the thoughts are stuck in my head". Patient is suicidal too. Hey, lot of us have been there, it sucks when you are stuck inside your head and cannot get out. When all the neuro can do is monitor you, make a note on the chart and send you home, no better, no worse.

Dr. O is thinking this may possibly be a missed MS dx, am again, I'm relaying second hand info here, and am not sure about how concrete all the stroke stuff is, or if it was inferred that he had one based on current symptoms, just don't know.

But, at that particular time of day, Dr. O just happened to have his ultrasound guy on hand, and did a UT on his IJV's. Both were blocked with inferior flow. Dr. O sent the UT to a fellow radiologist to take a look, and he too had a couple of raised eyebrows, saying he had, "never seen anything like this before", and I'm guessing that's in regards to the IJV's being blocked/slow flow alongside the presentation of the patient.

Now think about it, here you are, a patient, you've done all you can, followed the program like a good little patient, gone to your neuro, who I'm sure did an MRI, and possibly found something and inferred stroke or whatever, but then you aren't recovering or improving, life is a downhill slide and you are literally "losing your mind". Would you want someone to come along and say, "hey, no promises here, but there is one thing we can look at if you are interested". That's a no-brainer.


Mark



I understand that this patient was successfully dx'd and treated recently by a known-name Dr. and has experienced a dramatic turnaround. Just wanted to FYI, I was in the office to clear up a $ related matter and Dr. O was very excited to tell me that so thought I'd pass it on. Best Christmas present ever....
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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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Oct 03, 2013 9:58 pm

Hi all. This is my favorite post because it has Holly's name on it (peekabo).

It's been over four years since she reported the blow by blow. I will
never forget her.

Did not have a follow up scan this year, no resources available to
get to Palo Alto, though I would have loved to do that. Neuro doesn't want
to see me other than once a year. Frankly I do not have the time.
Had all three kids again over a very long hot summer, and did okay
not perfect, but okay.

My dear sweet mother in law for an unknown reason, collapsed two
months ago. No prior medical issues. This fractured the back of her skull
causing brain damage. She never recovered from the injury at the tender
age of 72. We are having her services this weekend.

All that to say, " still going strong", regardless of life's curve balls.

And to pay homage to Peekaboo/Holly, a true pioneer, we will
never forget you.

Your buddy, 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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