Stents for CCSVI-Jeff

Tell us what you are using to treat your MS-- and how you are doing.

Postby Abe » Mon May 11, 2009 11:40 am

Wonderful news Cheer!

I've been following all of the vascular research you have shared.

Glad to hear Jeff is feeling sharper.
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Postby cheerleader » Tue May 12, 2009 9:32 am

One week post op:
Jeff's headache and nausea are completely gone. WOOT!
He's feeling chipper and ready to heal. Went for a nice walk last night, soak in the hot tub, great sleep, no leg pain, wide awake this morning.

As we've now learned, the double jugular blockage and procedure is a tough one. Not many diagnosed and treated yet, (most MSers have one jug and/or one azygos) and the post op recovery time will be longer than other procedures, since the cerebral hemodynamics is vastly changed.

I can't imagine what it felt like to be in his head before, without adequate circulation. No wonder he couldn't keep his eyes open without provigil (a narcolepsy medication!) and the world felt dark and depressing.

May Jeff's step out in faith offer hope and light to those who are suffering right now. We understand...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Tue May 12, 2009 9:59 am

Man I hope that sticks. Good news. The head fog is definitely no fun and I hope mine gets relieved also. Can't wait. OSU has until this Thursday and then I'll get to meet Dr. Dake!
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Postby Sharon » Tue May 12, 2009 12:26 pm

Cheer -

As we've now learned, the double jugular blockage and procedure is a tough one. Not many diagnosed and treated yet, (most MSers have one jug and/or one azygos) and the post op recovery time will be longer than other procedures, since the cerebral hemodynamics is vastly changed.


Sorry your Jeff had to be one of the first to have the double jugular vein blockage. I think the one week post op report is fantastic!! How many of the other treatments have given MS'rs one week improvement on pain, brain fog, and fatigue? IMHO - ZIP, ZERO!!
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Postby loobiesmom » Tue May 12, 2009 7:00 pm

Sounds so encouraging and wonderful. I'm so happy for you guys!

Nell
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Postby notasperfectasyou » Wed May 13, 2009 7:36 am

Congratulations!!

So Jeff had Type C, yes?

Less: 1) Brain Fog, 2) Fatigue and 3) Pain

What kind of MS related Pain did Jeff have and is it all gone or just diminished? I suppose the same question is good for fog and fatigue. A log is a great thing, I'd hope to be able to get a gauge on what the trends are in post-treatment.

Did Dr. Drake give any thoughts on what he expected as outcomes? Has your research left you with a particular expectation? I guess what I'm asking is about your frame of mind - wait and see or wait and expect?

Ken
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Postby cheerleader » Wed May 13, 2009 7:48 am

notasperfectasyou wrote:Congratulations!!

So Jeff had Type C, yes?
Less: 1) Brain Fog, 2) Fatigue and 3) Pain
What kind of MS related Pain did Jeff have and is it all gone or just diminished? I suppose the same question is good for fog and fatigue. A log is a great thing, I'd hope to be able to get a gauge on what the trends are in post-treatment.

Did Dr. Drake give any thoughts on what he expected as outcomes? Has your research left you with a particular expectation? I guess what I'm asking is about your frame of mind - wait and see or wait and expect?

Ken


Jeff was indeed type C...a bit more rare, and the reason he was diagnosed late in life (43) because it's mostly brain issues...depression, fatigue, and his vision problems weren't typical optic neuritis, since he has drusen (no peripheral vision since childhood)...the docs missed it. Pattern C starts out RR, converts to SP faster than A or B. He had 20 brain lesions and one large one on his cervical spine, next to the closed jugulars. Dr. Dake expects the lesions to heal, and the assault to end, now that there is no more reflux or perfusion damaging Jeff's brain and spine. He expects healing. We are waiting and seeing....Jeff has another MRI and MRV in 2 months. We'll know more then.

Jeff's pain was/is from the cervical lesion. Tight calves with spasms and pain. This has remitted a bit, and only bothered him on one day in a week, whereas it was his daily friend by 4pm prior to treatment.

Jeff had his usual cup of coffee in the afternoon, and was up at midnight last night, reading...the coffee affected him more, whereas before treatment, he needed it just to get thru the afternoon. Guess he'll be drinking only in the morning now!

His spirits are good, and he's looking forward to continued healing. What that "means" is yet to be seen-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Wed May 13, 2009 8:15 am

cheerleader wrote:Dr. Dake expects the lesions to heal, and the assault to end, now that there is no more reflux or perfusion damaging Jeff's brain and spine. He expects healing.


Thanks Cheer. Two months seems like an eternity right now.

I gather from this that the idea is about excess pressure in the areas of the CNS that correspond to areas of vascular blockage. I envision something like a balloon presenting localized pressure in an area. or many be better a river that narrows, only this river can't simply rise, but rather backs up until a low point upriver releases the excess flow, or maybe a small stream upriver that is then made to flow backwards until a new "best way" is found for the river to redirect itself. Once under stress, that area might disrupt myelin. I wonder how immune cells play into this pathology? Ken
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Postby cheerleader » Wed May 13, 2009 8:32 am

Ken-
Marie explained the immune system activation quite well in the CCSVI forum. (I'll look later and see if I can find it for you...it's on the MONSTER thread) It's basically the clean up crew coming in to mop up the damage from the flood. (I've mentioned my flooded house a few times over at CCSVI) The slowed perfusion and reflux creates alot of havoc in the CNS.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Wed May 13, 2009 8:49 am

Cheer,
Thanks. I thought I'd ask if there was a quick "oh, yeah" reply. I'm sure I'll get to this in the one, two, red, blue thread. On thing I've learned is that I need to condense my abx thread into a new thread because following a long thread is nearly impossible for new folks to do.
Ken
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RE: Jeff

Postby Cojack » Wed May 13, 2009 11:27 am

Great stuff Cheer,

been gone awhile....can't recall...but i believe jeff was doing the raised headboard thing? If so, is he still doing it/is it no longer recommended?

cojack
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Postby mrhodes40 » Wed May 13, 2009 11:45 am

I thought maybe there'd be a quick 'oh yeah" answer


Here you go:
answer as to why oligodendrocytes are the hurt thing and demyelination happens including the immune system---

http://www.thisisms.com/ftopic-7158-90.html


here's a bit about inflammation
http://www.thisisms.com/ftopict-7174.html

marie
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
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Postby notasperfectasyou » Wed May 13, 2009 12:56 pm

Thanks Marie, I;'ll take this all on the train tonight. I'm really diggin' this.
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Postby cheerleader » Thu May 14, 2009 5:00 pm

Day 9:
Jeff's been working in his studio all day, no need for a nap or any pain relief. Just stopped down to visit, and he said his head is clear, focused. He had to do a phone interview at 3pm for a national magazine (re: his work) In the past, he would have been freaked out about the hour, since he had a hard time articulating his thoughts in the afternoon due to fatigue. He said the interview went really well, he felt clear-headed.
We'll go for our walk with the dog when it cools down in the evening. It's been blazing hot in our town this week. The heat hasn't affected him like it used to. All still good.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu May 14, 2009 5:17 pm

God BLess Jeff for stepping up and doing this first.--marie
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
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