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 10:19 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.
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Re: Notes from CureIous' at Stanford

Postby mrhodes40 » Mon Jan 18, 2016 7:38 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
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Re: Notes from CureIous' at Stanford

Postby Loobie » Mon Jan 18, 2016 8:09 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!
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Re: Notes from CureIous' at Stanford

Postby catfreak » Mon Jan 18, 2016 11:59 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.
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Re: Notes from CureIous' at Stanford

Postby CureIous » Mon Jan 18, 2016 2:12 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
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Re: Notes from CureIous' at Stanford

Postby magoo » Mon Feb 15, 2016 11:35 am

How are you doing Mark?
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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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Re: Notes from CureIous' at Stanford

Postby CureIous » Mon Feb 15, 2016 4:02 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
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Re: Notes from CureIous' at Stanford

Postby magoo » Mon Feb 15, 2016 4:07 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.
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Re: Notes from CureIous' at Stanford

Postby CureIous » Wed Feb 08, 2017 1:54 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
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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Feb 09, 2017 5:09 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
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Re: Notes from CureIous' at Stanford

Postby vesta » Fri Feb 10, 2017 11:24 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
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Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Feb 10, 2017 12:59 pm

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
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Re: Notes from CureIous' at Stanford

Postby CureIous » Sun Apr 02, 2017 1:19 pm

I hold true to my policy of honesty insofar as this CCSVI treatment, and/or its effects on my RRMS.

Good bad ugly. Let me of course start with the positives here some 8 years hence:

1. My particular flavor of MS would be considered mild by the medical textbooks, at least in 2008 prior to learning of this CCSVI. That being said the actual real world day to day impact on my life was anything but
mild, it was in fact quite and devastating and debilitating. Heat fatigue when wearing a hard hat for a living is its own unique form of torture, let alone when it was off it was bad enough, the endless memory lapses the complete lack and inability to even move from fatigue that was crippling. No I was not actually crippled and only someone with this condition understands what it feels like when there are 100 pound weights attached to all your limbs 24/7. When you have to have someone else constantly remind you that they have to remind you and your significant other has to take care of almost everything because you can't even keep the last hour straight in your head.

OOOKAY point made. Now it is my personal belief that the majority of those particular symptoms were specifically a result of compromised blood flow, regardless of whatever concomitant destruction was being had up in the brain with lesions and scarring etc.

And so when that blood flow was rectified those symptoms went away and they have still not returned after 8 years, and I believe that is owing principally to the fact that these stents have maintained this openness for these years and have prevented restenosis which is a rampant problem with venoplasty.

No of course that is not an advertisement for stents I am only evaluating my own particular situation, take it or leave it.

So I have for all intents I have had eight very very excellent years of so-called remission from this "MS" if that's what you want to call it, yet on the other hand I always always left an opening for this immune system and the vagaries that it may present over and above the aforementioned. I declined the drugs also during this time.


I really stopped even mentioning Ms stopped going to see the neurologist after a few visits because it was becoming pointless, but I was always watchful.

Okay so now on to what may be considered bad news.

About two years ago I was on an extended vacation from work, spending a lot of time reading and surfing the internet on my phone and taking care of the kids school you name it. Life was just level, no ups or downs.

During this time on my phone I started to develop what I thought was carpal tunnel syndrome, which would have made perfect sense considering how much use and abuse my right hand was taking surfing on this phone. Fair enough it was my decision to abuse my working hand, and after roughly a year of trying to stretch it out ice it out exercise it out I gave up and went in and saw an orthopedic specialist, who promptly scheduled me for carpal release surgery, so after that was done the symptoms didn't seem relieved, they said wait 6 months I waited a year.

Went and saw some sports injuries specialist that treat professional athletes and this time there were nerve conduction studies emg's etc., along with MRI's blah blah.

By this time the symptoms were very consistent from day-to-day nothing seemed to alleviate them it is basically numbness on 100% of my hand front and back, a very bad place to be with your dominant hand when you use your hands to make a living. This then led to another neurologist not my regular one and he ordered what I haven't had for quite a while and that's an MRI with and without contrast including the cervical spine.

You are all aware I don't have a stent on my right side anymore so I have no idea whether that flows now compromised in so far as being a contributing factor here, nevertheless the MRIs showed lesions that I did not have previous and they are on my cervical spinal cord, and those unfortunately would perfectly explain this numbness because attributing to this or that nerves is only going to impact certain portions of the hand not the entire hand front and back.

So that is where I am at right now I have a feeling this is numbness is here to stay even though I am absent any and all other previous symptoms I ever had for MS. The hand is still perfectly usable it is just extremely frustrating writing using knives that sort of thing fine motor skills if you will and I'm constantly dropping things out of that hand. Obviously not a gamechanger, but for me specifically it's extremely disheartening because of all the things that use that hand for and now those fine motor skills are very hard.

The hand is not crippled I still have strength in it which also proves that it's not any particular nerve impingement, if after 2 years it's essentially just static it's not getting worse it's not getting better.

Anyways that's all I have if I had the chance to go back to August 2009 and do it all over again I would not change a God blessed thing, and have absolutely no regrets. My slipped stent is in an extremely safe spot is not going to go anywhere, and this is why I have never ever once recommended somebody get stents.

That being said I do fully believe after working with my local doctor here and what he has to say about ccsvi that if we could somehow in the future get dissolvable stents in to just hold those veins patent long enough to retrain the sympathetic and parasympathetic nervous system that they would remain patent after those stents are gone this is why angioplasty does not work, these IRs are treating transient stenosis without any regular pre-post follow-up scans at regular intervals so they could see just how useless a one-time one location treatment is for the majority of patients. All these current studies and the way they're setup are guaranteed to fail.

My local doctor did at least 4 scans prior to and regular scans after treatment so he has documentation these studies do not, one particular shot in time is not enough to diagnose or treat, or declare success or failure.

Sad.

So anyways I'm not really read up at all about cervical lesions and the part they play what the future might hold or whether these symptoms may abate in the future or if they are a permanent fixture I don't know would appreciate any thoughts on this from other experts thank you. I don't even think steroids would help.

Also I have an appointment in a few weeks with my regular neurologist and I will have the most recent scans and our old scan so we can make comparisons and try to figure out if there are any new lesions or not other than the cervical. Also I feel it is very important to add that no lesion either in the brain or spine enhanced after administration of gadolinium.


Mark Miller, Cureious

Any all positive contributions appreciated. Shooting the wounded messenger not appreciated.
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 magoo » Sun Apr 02, 2017 7:00 pm

I wish I had some wisdom to share. I just wanted to wish you luck and healing. It sounds quite worrisome, but whenever there are changes physically or on MRI, that's a normal reaction.
I have loved and benefitted from my stents. They have always looked good when checked. I too, have relief from that dreaded lead blanket feeling and heat sensitivity. That does not mean I've been perfect. I found out that chronic EBV and Lyme/Bartonella are what have been plaguing me and are what probably caused my venous stenosis in the first place. Treatment for these chronic infections is an imperfect science. I'm managing though.
I hope the hand resolves and this flare up of symptoms goes away quickly.
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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Re: Notes from CureIous' at Stanford

Postby vesta » Mon Apr 03, 2017 9:04 am

Greetings.

When did you have the accident that dislodged your stent and do you think that is related to your hand symptoms and cervical spine lesions?

Best regards, Vesta
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