Notes from CureIous' at Stanford

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

Re: Notes from CureIous' at Stanford

Postby 1eye » Sun Jan 17, 2016 9:19 pm

I hope your trouble is successfully dealt with soon, by well qualified people. Good luck. Hope you continue to post here on occasion. Don't work too hard.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience

I am not a doctor. Do not take anything I say as medical advice.
User avatar
1eye
Family Elder
 
Posts: 3563
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Advertisement

Re: Notes from CureIous' at Stanford

Postby mrhodes40 » Mon Jan 18, 2016 6:38 am

Wow Mark! I am so sorry to hear that your stent moved. I am glad that you have good help locally and hope that if a retrieval is necessary it is handled easily. I am also sending good thoughts and prayers your way.

I long for the day when treatment, monitoring, and review of our status is unquestioned and easy to get. I am really happy to hear you continue to be well overall and still feeling the benefits of your improved blood flow over the last 6 years. Hopefully this will be handled now that you are aware of it. Thank you for thinking to let us know how you are!
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
User avatar
mrhodes40
Family Elder
 
Posts: 2067
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Re: Notes from CureIous' at Stanford

Postby Loobie » Mon Jan 18, 2016 7:09 am

Well I got the emails and had to come here and check. I don't get out much so probably no whiplash in my future but has anyone else 'felt' their stents as a sore and swollen area right beneath your ear? I suppose that's location related but mine sometimes gets sore and that swollen spot is not on the other side so I assume it's my lowest stent!

Last update since I haven't been on here in years, my shoulder issue, if anyone remembers, where my spinal accessory nerve got damaged going through the foramen, is going to be an issue forever. Could not work it out with PT since it's nerve damage but arm goes numb all the time due to posture and position so yeah! Marie can probably echo that sentiment!

Still on my feet and sporting a newly botox'd bladder! That is life changing. Two separate uros told me I couldn't get it because I only void about half my bladder contents but I had a new one that said "are you scared to cath?", I said no, and he said "you need botox!". So goodbye stadium pals every day and hello cathing in public restrooms! But now I have TIME to get to the BR! And if you have the right stuff, it's not that bad at all! When you go to a bar because your favorite micro brew has a tap takeover and the restroom is upstairs and doesn't have a stall or lock on the door, cathing can be tricky but not impossible! HaHa!

Anyway, my email is bchapman2@att.net so get ahold of me if you want to yap! I'm still supportive of CCSVI knowing that it helps many but my veins are still flowing (as shown by the new CCSVI Dayton clinic) and I still progress so my MS is obviously the kind this doesn't help. But with so many others getting relief there has to be more to it than the medicines!

Sorry to hijack your thread Mark!
User avatar
Loobie
Family Elder
 
Posts: 2197
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Re: Notes from CureIous' at Stanford

Postby catfreak » Mon Jan 18, 2016 10:59 am

Oh my Mark! Thank you for sharing this with us. I get an MRI every six months but that is basically it. I go to my Neuro Friday and I am going to ask him if he can see them on the MRI Scan. Prayers for you! Please keep us posted.
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.
User avatar
catfreak
Family Elder
 
Posts: 792
Joined: Sun Jun 01, 2008 2:00 pm
Location: Mississippi

Re: Notes from CureIous' at Stanford

Postby CureIous » Mon Jan 18, 2016 1:12 pm

well it was worth it just to see Loobie and cat post!

My local guy (who is not my regular Dr., just someone who found out about CCSVI thru me), is very intelligent, connected, knows my regular Dr., and has not one ounce of pretense in him. Remember, it was the longing to find something to help out his childhood friend from Iran that led him down this path. I trust him implicitly. Anyways, in good hands here, doubt I will be sojourning to Palo Alto anytime soon, not enough time and money.

Promise I will update the second I know anything, these holiday weekends always put a kink in the plans eh?
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
User avatar
CureIous
Family Elder
 
Posts: 1233
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Re: Notes from CureIous' at Stanford

Postby magoo » Mon Feb 15, 2016 10:35 am

How are you doing Mark?
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.
User avatar
magoo
Family Elder
 
Posts: 570
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC

Re: Notes from CureIous' at Stanford

Postby CureIous » Mon Feb 15, 2016 3:02 pm

magoo wrote:How are you doing Mark?


Doing just fine thanks. Long story short, the stent okay for now where it rests. An IR familiar with CCSVI looked over my CT angio and said I could leave it or take it out. Opting for no action on this one, at least for now. There is nowhere for it to go..No sx and just had the right jug ultrasounded and it's open and flowing.
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
User avatar
CureIous
Family Elder
 
Posts: 1233
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Re: Notes from CureIous' at Stanford

Postby magoo » Mon Feb 15, 2016 3:07 pm

That's good news. Can't ask for a better outcome with a dislodged stent. Stay well.
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.
User avatar
magoo
Family Elder
 
Posts: 570
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC

Re: Notes from CureIous' at Stanford

Postby CureIous » Wed Feb 08, 2017 12:54 pm

https://youtu.be/l5x3nJ6-EMk

Just a quick update for posterity, I realize there's not much happening here anymore but at least I can update my latest ultrasound from about an hour ago this is from my local guy that is conducting the study his ultrasound tech is very experienced in ccsvi anyways as you can see from the video the right side where my stent migrated is still fairly robust and he is really thrilled with the left side, the stents are wide open he's not even able to compress the vein while scanning.

Yes I'm a little miffed still about not being informed about my migrated stent that I had to find out all on my own but it's a no harm no foul at this point the point is that stent held my vein open long enough that the vein essentially retrained itself to stay open, this involves the sympathetic and parasympathetic nervous system and the associated nerves that service these veins on the outside, this is the point that the doctors are not seeing as they are looking to treat from the inside, my doctor here understands that intuitively which is why his novel treatment works inexpensively and with minimal patient hassle what a shame that he shows up at ISNVD and can barely get any traction even after handing out posters explaining all of this, I have some of these posters some extra copies so if anyone wants one just shoot me an email and I'll be more than happy to mail you one my name is even on there if that means anything haha.

The video starts with me sitting up and on the right side that has no stent now and then switches over to left so this is a sitting up ultrasound this is when your veins are essentially supposed to collapse for the most part so even then I still have very robust flow which is good, I have no complaints.

lovemystents@yahoo.com

And soon as I post this I'll upload a shot of the posters they are a little much for transmitting online and or scanning.
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
User avatar
CureIous
Family Elder
 
Posts: 1233
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Feb 09, 2017 4:09 pm

As mentioned here's a few shots of the posters that my Dr. presented at ISNVD 2016.

There are two, one for his original protocol that has been very successful in treating migraines, currently under submission for FDA approval, and his adaptation of that treatment in treating CCSVI, which has also shown success in the few patients treated. All at no cost to the patients, and using his own resources.
Nevermind that ALL had already undergone traditional CCSVI treatments.

This Dr. is the real deal, which is why I have no problem backing him up 100%, we've seen enough $ grabs on this, he is genuinely all about helping us. What a shame when only IR's now get any traction.

Send me your address and I will gladly mail a copy of each no charge. These are too big to scan and don't feel like messing with it. Pretty interesting stuff.

Mark

lovemystents@yahoo.com

Image

Image

Image
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
User avatar
CureIous
Family Elder
 
Posts: 1233
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Re: Notes from CureIous' at Stanford

Postby vesta » Fri Feb 10, 2017 10:24 am

Hello:

I am going to send you a personal message to request a poster (if still available). It is typical that each specialty wants to monopolize treatment. So much for IR's touching concern for MS CCSVI patients. I've found that just massaging the veins to bring blood down from the head can stop an "attack". Your Drs approach may be more effective. Thanks for posting this and promoting his therapy.

Best regards, Vesta
vesta
Family Elder
 
Posts: 476
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Feb 10, 2017 11:59 am

Thanks Vesta! FYI just for posterity while we're at it I do have the ability to send more than one copy of each for the purpose of possibly sharing with either other patients or other doctors to just Network, there's absolutely no fundraising whatsoever involved in this, just for the record in case anyone thought there was any of that in this.

He reallly needs/desires collaboration with either larger universities or hospitals Etc it would not be that hard to set up a larger-scale study he just needs help he's a one-man Army at this point and one hell of an army I might add... the cost associated with this is so incredibly minimal versus any sort of study involving surgical procedures etcetera that it's an absolute shame it's not being studied harder and faster, as we all well know any one treatment modality is but just another piece of the puzzle that I believe the IRs are missing ,well at least some of them, maybe most. They are simply doing what they do best treating from the inside out he treats from the outside-in that's the main difference.

The ultrasound before and after do not lie the improvements in the woman patient with PPMS coupled with proper physical therapy has taken her from an almost predetermined course that her aunt and her mother both followed and we know how that goes from cane to wheelchair to bed to immobility and she was actually able to get out of her wheelchair and walk that's not a joke. She went from having assistance for dressing and showering to showering and dressing herself on her own this simply does not happen with PPMS patients her condition has not worsened for over 3 years now all from this simple treatment that is why I am so adamant this deserves further investigation and of course not to exclude all other avenues it is just worthy of consideration that's all.

I would stake my reputation and everything I own on this that's how strongly I feel about it.

Thanks for the private message I have that and about three other emails all I need really from people is an address and quantity if they are interested in sharing with others.

Mark Miller
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
User avatar
CureIous
Family Elder
 
Posts: 1233
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service