3 week post stent update

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

3 week post stent update

Postby Jeff_wMS » Wed May 27, 2009 8:15 am

Hi Everybody - it's just over 3 weeks, since my dual jugular stents were put in at Stanford. I wanted to let you all know the latest. All head pain is gone, and it's usually very easy to forget these are even 'in'.

One difficulty, has been episodes of shoulder-pain. Esp. on my upper left shoulder. Because my left stent procedure was more involved - (Dr. Dake actually had to use 2 stents - one smaller inserted through a larger one) - the left has been slower to recover. A hot towel in a zip-lock usually helps relieve this. Also, I realized that the angel of my head is extremely important to avoiding this aggravation. Usually in the AM, I will sit with my laptop, check email and news, etc - but because my notebook is in my lap - the angle of my head was pitching down too much, putting pressure on the stent. Dr. Dake had warned me about such things, but it's funny who sometimes you do something 'natural' and don't even realize it.

Now for the really great news. My fatigue is increasingly dissipating, and my alertness improving! This is huge, as the fatigue has always been the toughest part of my MS. I used to constantly drink a ton of coffee to stay alert during my workday, and have begun to pull back considerably - never intend to completely quit, it's nice not to feel to desperate for any extra energy.

I would also need a mid-day rest lying down for an hour or 2 to be ready to go back to work - and I can take a much shorter break reclining now - lately 15-20 mins tops. I feel as if I an getting those 'lost' hours back and it's a dramatic improvement in quality of life and mood. Before surgery, there would be much more brain-fog, which seems dramatically better as well.

Dr. Dake mentioned there will be probably a 'retraining' period during which I can use the new improvements continue to incorporate the new abilities, from the new circulatory health.

I continue to exercise regularly - now mostly long walks with Cheer and our dog. I miss the bike (love to mt. bike) , but after I'm off the blood thinners I hope to resume that as well. I might try a few short street rides before if I continue to feel more confident in my upper body mobility.

Best to you all- I look forward to hearding/reading more stories here as more of you go to Stanford (or other places in the US where they will be able to test for this).
Jeff



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Postby mrhodes40 » Wed May 27, 2009 8:30 am

Wow, great news Jeff!! thanks for sharing it with us all.

I like that it seems healing continues to come along in every area......... bit by bit. Very nice!
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Postby Loobie » Wed May 27, 2009 8:38 am

Just wonderful to hear Jeff. Have you noticed any difference in the veins that used to "pulse" and be visible? Cheer and I had talked about that at the very beginning as I was telling her that even with my crappy eyes, I can still see my "neck pulse" prominently and she had said that you had occasions where you had a pulsing vein also. Just curious.
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Postby Loobie » Wed May 27, 2009 8:45 am

Hit submit accidentally!

I was going to say that I have been increasingly really paying attention to my head. I mean even when I don't have a headache, my head still feels "full". Most people will tell you that it's not full of backed up blood 8O but that's another story! But seriously. Making quick head movements, and actually paying attention to how they feel, has led me to realize that there is always "pressure" in my head that makes me feel dizzy and what not that I had just written off since there were so many other major things I was worrying about. Now this is all going to sound a bit odd if I only show azygous involvement, but I thought I'd note it since there are so many little things that just keep "feeding" this theory for me.

That, the constant headaches, the beet red face I used to get even when I could run miles and still have a very low heart rate. I think I'm probably fitting my scenario into what I want to believe, but who the hell knows?

........C'mon July..............
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Postby Rokkit » Wed May 27, 2009 3:11 pm

Hey Jeff, new therapies like this are usually assessed thru double-blind studies to account for the placebo effect. I was wondering if you are at all concerned that your improvements could be due to your mind instead of the treatment. I ask this with the utmost humility, I don't at all wish to offend someone putting himself out there experimentally like you are. Are the improvements of a significant nature that there is no question, or do you worry that you could be feeling what you want/expect to feel?

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Re: CCSVI improvements vs double blind

Postby NHE » Wed May 27, 2009 4:31 pm

Rokkit wrote:new therapies like this are usually assessed thru double-blind studies to account for the placebo effect. I was wondering if you are at all concerned that your improvements could be due to your mind instead of the treatment. I ask this with the utmost humility, I don't at all wish to offend someone putting himself out there experimentally like you are. Are the improvements of a significant nature that there is no question, or do you worry that you could be feeling what you want/expect to feel?

Not to attempt to speak for Jeff, but I understand what you're saying. You pose an interesting question. However, I'm not sure that correcting CCSVI problems fits into the paradigm of a double blind study. For example, when a patient gets scanned, either they would have a stenosis or they don't. If you have a stenosis, then it should be fixed if possible. To not fix one, or to not inform the patient they had a stenosis, or to do a sham surgery on a person all would potentially put their health at risk. It is not like a drug study where you could give someone a harmless sugar pill or saline injection and thus account for a placebo effect. Anyway, those are just my thoughts.

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Postby cheerleader » Wed May 27, 2009 5:00 pm

Jeff's working...(sorry to show up on your thread, honey)..and I won't speak for him, but I honestly think he was pretty incredulous about all of this, and went up to Stanford cause 1. he loves me, and 2. thought I'd shut up about all this CCSVI stuff if he got tested.

All three of us (Dr. Dake included) were pretty astounded to see the amount of occlusion in Jeff's jugulars. Jeff's written about how he decided to go ahead with the stents in the office that day.

He told me later that his head felt clearer as the stents were going in...that there was a sense of release and then clarity. I don't think he was expecting that, nobody told him he'd feel that, even Dr. Dake didn't say that might happen...Jeff had no expectations of what this procedure would do or not do. Jeff's a pretty down to earth guy, not big on hyperbole (like I am.) So, when he says he has more energy and less fog, that is honestly what he perceives.

NHE is right, this is not the kind of thing that can be compared to placebo. There was a mechanical malfunction that has been repaired. The real proof of the pudding will be future MRIs. Will the lesion load diminish? Will his MS progression be halted? You can't fake that stuff. OK, I'll shut up. Jeff will chime in when he gets some time...
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Postby mrhodes40 » Wed May 27, 2009 6:07 pm

However, I'm not sure that correcting CCSVI problems fits into the paradigm of a double blind study. For example, when a patient gets scanned, either they would have a stenosis or they don't. If you have a stenosis, then it should be fixed if possible. To not fix one, or to not inform the patient they had a stenosis, or to do a sham surgery on a person all would potentially put their health at risk.


Well said NHE. My primary care doctor said the same thing about this: you can't double blind surgery, if there is an anomaly, then it should be repaired. The proof will be in the MRI's down the road; all any one of us feels at this point is anecdotal and subjective.
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Re: CCSVI improvements vs double blind

Postby NHE » Thu May 28, 2009 1:25 am

I just had this idea. I share it freely with the world even though it could potentially make someone quite famous (though a little credit would be nice of course). I do this as I think that it will help to move this area of research forward. We all know that researchers can create an "MS-like" disease, EAE, but inoculating lab rats and other critters with myelin antigens. This model has been used for years to study various drugs and treatments. However, there are flaws with this model and lab mice and rats can be cured of EAE but those very same treatments are often not effective in people. Now, what would be really interesting to study is this question and it seems like an obvious experiment to do. Can you create an "MS-like" disease by creating an artificial stenosis? It should be easy to do. Just find some lab rats or other critters to "volunteer" to have their jugulars clamped down. One foreseeable problem with such an experiment is that we know that MS in people takes a long time to develop. It could be that such a study in lab animals might simply take too long. Or perhaps using methods such as 7 tesla MRI would show a similar microlesion pattern as to those which are seen in people. Good idea or bad? Please share your thoughts.

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Postby whyRwehere » Thu May 28, 2009 2:14 am

Poor rats! Can you even wish this on them?
By the way, I wasn't saying I thought they were saying no before, I just think the neuro sometimes is not open enough(in mind to other ideas) to refer you, so they should not assume he should have the last word. I do think a GP knows you better; they see you more often for one thing.
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Postby mrhodes40 » Thu May 28, 2009 7:08 am

NHEid
clamp down jugulars on lab rats


I have had that thought too--as well as the same "but it might take too long" thought.

In my case this is congenital I was born with a too tight spot at the angle of my jaw so the jugs got pinched. It has been developing my whole life.

I sort of wonder if the collateral circulation was "adequate" most of the time and it only occassionally was so bad that a lesion developed. I am 48 years old--that is a long, long time.. I was 30 when I got the first dramatic incident, so 1/3 of a lifeime to show up... and the first incident resolved I only got "bad" 5 years ago
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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Postby Jeff_wMS » Thu May 28, 2009 9:03 am

hey thanks all for weighing in - Yes, exactly there can't be a double blind surgery. I will be the first person to say that the experience of one patient is by definition anecdotal, and should be read and taken as such.

I just abhor the idea of false hope for us. All of those suffering with a chronic disease know the spiral of hope and disappointment in various approaches to MS, which is often symptom management. There have been many mornings when I've looked at my wife and said 'just shut up - that's thrilling that this new supplement theory or trial or whatever is 'it' - I feel like crap today!'

And, I will say (as my wife mentioned above) I entered this whole journey from a place of relative skepticism of my own connection to Dr. Z's venous findings. The fact that someone like me - only diag. 2 years ago with RRMS (although cheer and I surmise I've 'had' it much longer than that due to other symptoms we can now reason back in time to early stages) showed such an obvious double jugular defects was a big surprise.

And to answer the question - I know fatigue very well. The feeling of getting up after 8-9 hours in bed, and still feeling 'tired' - that has been my morning reality for 2 years, and the past three weeks - it's gone.

I've had periods of mild relief before and I do believe in the power of virtuos mind-body cycles as part of good health and healing, but in past episodes of such relief, the fatigue always 'caught up' and returned to the mean in days.

So - again, this is purely anecdotal, and one patient's experience, but.. this feels completely different than other 'mini-remissions' of the fatigue. I think time will be the true test if this is a lasting improvement or short term bounce from the norm. I'd like to believe it's the former - but regardless I will update as things progress.

So, is this a 'cure'?? - I haven't a clue. But, enjoying the improved quality of life 3 weeks post-procedure, I would not hesitate to have made the choice I did!!
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Postby mrhodes40 » Thu May 28, 2009 9:21 am

is this a 'cure'?? - I haven't a clue. But, enjoying the improved quality of life 3 weeks post-procedure, I would not hesitate to have made the choice I did!!


Well said and Ditto. Thanks Jeff for sharing what is up with you.
marie
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Rainbolt » Fri Nov 27, 2009 11:13 pm

Thank you for letting people know how things are going for you - it is very encouraging to hear it straight from a patient whose done it!

Thank you thank you thank you!
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Postby Montana » Sun Nov 29, 2009 1:12 pm

I am reminded of the dozens of times over dozens of years that I was told my dizziness, numbness, reactions to heat, weakness, vision problems, etc. were "in your mind." Not until I became paralyzed and was diagnosed with MRI, spinal tap and evoked potentials was I taken seriously...me, a grounded health care professional, was treated like a psychosomatic nutcase. It's been 20 years since my diagnosis, yet recently I had a neurologist tell me that he didn't think I really have MS because, "you are doing too well." He could not see the invisible symptoms hidden behind my smile. I'm sure others have had similar experiences. So, lets not think too much about symptoms considered to be "in your mind" now being relieved by therapy whose results may be "in your mind."

"Hey Jeff, new therapies like this are usually assessed thru double-blind studies to account for the placebo effect. I was wondering if you are at all concerned that your improvements could be due to your mind instead of the treatment. "

Folks, this is not a phantom disease, nor a hyponchondriacal illness. It is real and I am grateful to hear from those of you reporting relief after years of symptoms. I don't need a double-blind study, I know how I feel, I know how my body behaves, I know what is happening in Italy and Poland, Canada and the US and I look to you to hear how I could feel if this treatment moves forward. We must all do our part to make that happen.
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