Hi from Jeff, re. my stent treatment at Stanford

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cheerleader
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by cheerleader » 6 years ago

Jeff just had his three year MRI and visit with his neuro---preliminary data: no new lesions, no enhancing lesions, brain looks good and stable. Still has that nasty lesion on his cervical spine. The techs are going over it more specifically, to compare the last 5 year data...he had over 20 brain lesions when diagnosed, and he's had some healing and growth in gray matter.

He's doing really, really well--working full days, traveling, exercising everyday (almost!) still on Swank and endothelial health program and copaxone. Still sleeping really well, has hilarious and vivid dreams, no more sleep apnea, bladder urgency or heat intolerence. Still has neuropathic leg pain, which is worse when he's tired or stressed, occassional headache or dizziness, but no motor problems. At a 1 on the EDSS. Hopefully, there will be an article published in the not too distant future on his journey. We're waiting for publishing date, and will let all know.
feeling very thankful. Take care, everyone!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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DougL
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by DougL » 6 years ago

thanks for the update

David1949
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by David1949 » 6 years ago

That's great news. Congratulations to Jeff and the Stanford IR who treated him, (Dr. Dake?). It seems like we don't hear many success stories anymore, but we need to hear them.

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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by Cece » 6 years ago

Such a great outcome. Congrats.
If you were to guess, where do you think he'd be today if he hadn't gotten CCSVI treatment? Was his MS fairly stable, or were things getting worse and since CCSVI they've been getting better?

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cheerleader
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by cheerleader » 6 years ago

Cece wrote:Such a great outcome. Congrats.
If you were to guess, where do you think he'd be today if he hadn't gotten CCSVI treatment? Was his MS fairly stable, or were things getting worse and since CCSVI they've been getting better?
Jeff was not in a good place with his MS before we went to Stanford and saw Dr. Dake, Cece. From his dx in 2007-2009 he was exhausted, unable to get out of bed in the morning, not sleeping well at night due to central sleep apnea (different from obstructive sleep apnea, this signals low O2 levels in the brain) and bladder issues, depressed, in a lot of pain. His MS looked "stable" on MRI from his first flare, but his symptoms were killing him. Copaxone didn't change his symptoms. He was on baclofen to deal with painful spasms. The heat intolerence was terrible, since we live in LA, he couldn't think clearly on hot days. He tried cooling vests and caps, nothing worked. Tried a handful of meds, everything just made him more tired and depressed. I feared the worst. I hazard to guess where he'd be today, Cece. Don't like to go there. Our family was not in a good place.

You can start at the beginning of this thread and read, in Jeff's own words, what changed after his jugular veins were opened. This is a man who had no idea what to expect from the procedure (since he was first in north America) and because of this, I have to discount placebo. Also, many of his improvements came while he was asleep, in a prone position when jugular veins are utilized. Within a month he was sleeping thru the night, no longer waking, gasping for air, no more spasms (no more baclofen), heat intolerence or cog fog. He was dreaming again, and during the day he was social, engaged, energized. He began exercising regularly, and our son and I saw a return of the Dad and man we'd know prior to that first MS flare. The CTV show documents this quite well (Part 2 of The Liberation Treatment) http://www.ctv.ca/CTVNews/WFive/2009112 ... on_091121/
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by PointsNorth » 6 years ago

It gives us hope that if we can keep the gates open we could enjoy some measure of lasting results. Thanks for updating us Jeff.

PN
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by tiltawhirl » 6 years ago

Thanks very much for the update! All the best on continued healing :)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Cece
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by Cece » 6 years ago

I feel such gratitude to have been among the early group of patients getting treated, and I am only one year out from my procedure. Three years out is about as early as you get, unless you're in Italy.

This is the thread I mentioned in a different post, where we heard from Jeff after many many posts from Cheer. :)

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MaggieMae
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by MaggieMae » 6 years ago

Best wishes to Jeff for continued improvements. "Healing and growth in gray matter" sounds wonderful.

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Billmeik
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by Billmeik » 6 years ago

I liked that lydian stuff in one of the vids for the ccsvi group. Sharo 11's for ccsvi!

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erinc14
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by erinc14 » 6 years ago

I always like to hear good news !

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magoo
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by magoo » 6 years ago

Fantastic results and a very happy outcome! If it weren't for you and Jeff, we would not be here celebrating all of our recoveries. Actually, most are out living, and not spending too much time here any longer. That's a good thing!
Hope you two have fun celebrating!
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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cheerleader
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by cheerleader » 6 years ago

WOOT! Got the full report from the techs. They looked at all of Jeff's MRI reports for the last five years. Jeff has no new lesions, none enhancing, and his basal ganglia, brainstem, posterior fossa and thalamus all look normal. Also, great news--the ventricles are normal in size and configuration. Ventricle enlargement is one of the signs of brain atrophy, and we are thrilled to say, his brain is looking good. The old lesions are still there in his subcortical deep white matter, but nothing new. Very thankful.

Thanks for all the encouraging comments, guys. Will share with Jeff. We feel so grateful to Dr. Dake and this whole board. For more information on how ventricle enlargement and gray matter loss is important in understanding MS progression (and why we're so happy the techs don't see this) check out research on this, and always ask how your ventricles and gray matter are doing.
Conclusion The rate of ventricular enlargement seems to be even more strongly predictive of disease progression after medium term follow-up than whole brain atrophy rate, and also outperforms lesion measures. Central atrophy rate could therefore be an important prognostic marker, especially in the early stages of MS.
http://jnnp.bmj.com/content/81/12/1351.abstract
Recent studies have indicated that brain atrophy is more closely associated with cognitive impairment in multiple sclerosis (MS) than are conventional MRI lesion measures. Enlargement of the third ventricle shows a particularly strong correlation with cognitive impairment, suggesting clinical relevance of damage to surrounding structures, such as the thalamus
http://www.ncbi.nlm.nih.gov/pubmed/17875909
onward,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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cheerleader
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Re: Hi from Jeff, re. my stent treatment at Stanford

Post by cheerleader » 6 years ago

Jeff introduced Dr. Michael Dake at the CCSVI Alliance Doctor's Roundtable in San Francisco in March----
here he talks about his treatment and improvements.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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