Stents for CCSVI-Jeff

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Stents for CCSVI-Jeff

Postby cheerleader » Thu May 07, 2009 6:16 am

Wanted to have a journal for Jeff's journey.
He has received two stents in his internal jugular veins. His IJVs were both blocked with stenosis, and Dr. Michael Dake of Stanford has surgically implanted the stents to keep his veins open, and his brain and cervical spine area draining blood back to the heart. Dr. Dake believes Jeff's lifelong chronic cerebrospinal venous insufficiency has created the lesions and damage in his brain and cervical spine.

Day 1 - 2 jugular stents placed via endovascular (thru the groin with a catheter) surgery. Stayed in hospital overnight. Felt pain where stents are placed, due to stretching open of stenosied veins. Headache.

Day 2 Jeff comes home. Feels less "brain fog." No leg pain at end of day, less spasms at night. Chronically bloodshot eyes are clear. Still bad headache at top of head and pain at stent site, relieved with tylenol.
Jeff will take warfarin and baby aspirin to keep blood from coagulating, and keep stent sites clear while the veins incorporate their new "parts."

will update-
AC
Last edited by cheerleader on Sat May 16, 2009 10:33 am, edited 1 time in total.
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 07, 2009 8:28 am

Thank you for doing this Cheer! it is going to be very well read I know it :wink:
marie
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Postby gibbledygook » Thu May 07, 2009 9:24 am

WOW!!!!!! :D
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby peekaboo » Fri May 08, 2009 6:39 am

cheer wrote:

Jeff will take warfarin and baby aspirin to keep blood from coagulating, and keep stent sites clear while the veins incorporate their new "parts."


Does this mean that Jeff will need to stop taking the supplements for blood thinning in your endothellium regemin? Or is he still going to take the complete program?

H.
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Postby cheerleader » Fri May 08, 2009 6:53 am

peekaboo wrote:cheer wrote:

Jeff will take warfarin and baby aspirin to keep blood from coagulating, and keep stent sites clear while the veins incorporate their new "parts."


Does this mean that Jeff will need to stop taking the supplements for blood thinning in your endothellium regemin? Or is he still going to take the complete program?

H.

The doc asked him to keep on the supplement program for baseline. The less Jeff needs of the meds, the better. He gets his blood drawn at our GP today to check coagulation #s.

Day 3-4 Still has headache and stent site pain. Tylenol relieves it. Dr. Dake said this was to be expected, due to the level of closure in his jugulars and the increase in cerebral hemodynamics with the new stents. He remains confident it will resolve soon...but Jeff is bummed. I don't think we were prepared for the level of post op healing needed. Just some advice to those going ahead...give yourself some time to heal after the procedure.

We went out to my son's open house at school last night- Jeff was on his feet for over 2 hours, walking around, visiting classes. He had no problem, no leg pain. As he said, "Well, my head may be throbbing, but my legs feel great!"

Jeff's back to work (he works at home in his studio, so he's able to take naps, breaks as needed.) We'll see how the days go, and hopefully the head pain will continue to diminish-
Another thing he noticed..."When I'm awake, I really feel awake again."

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Fri May 08, 2009 9:50 am

Standing for 2 hours with no leg pain is E - Freakin' - normous to someone like me (and obviously Jeff). Great news!
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Postby cheerleader » Sat May 09, 2009 1:56 pm

Day 5:
Jeff's still taking it easy. Upset stomach, although less than yesterday. Still headache, but less again. Jeff feels the most pain upon waking and changing position from sleep to upright...between the blood thinners and new drainage, his hemodynamic flow is very different from before. We'll go for a walk after dinner. It's really hot here today (90f), but the heat's not really affecting him- this isn't his regular fatigue and he's not taking any provigil. He's listening to his body, taking it slowly. No pain except for head and tummy. (He's never had IV anesthetics before, and I wonder if they contributed to this? He got really nauseous during the procedure) Dr. Dake says he should feel better after resting this weekend.

Drinking lots of liquids, napping, eating lightly. He said he's taking his cue from our dog (who sleeps on the floor beside him)
cheer
Happy Mothers' Day, to all the mommas out there!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Sat May 09, 2009 3:16 pm

Just a short post to say thanks for your update AND....

A HAPPY MOTHER'S DAY to you also! I can only hope that someday your son will realize and understand what his mother has done for so many of us. I just hope that I can "pay it forward" in the not to distant future.

Happy Mother's Day to all - I am being treated to a game of golf with my two daughters by my thoughtful two sons-in-law. ENJOY! :D
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Postby mrhodes40 » Sat May 09, 2009 3:25 pm

Great update Cheer thanks! Happy Mother's day too!

And wow what a great thing to have not hurting legs and awake feeling awake..............WOW!!!! and no heat issues. Man. It all is so very good.

Thanks Jeff for doing this forst and sharing! Endovascular surgery is real surgery. No one should misunderstand that part of it... it is not to be undertaken lightly.
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 Loobie » Mon May 11, 2009 5:12 am

http://www.youtube.com/watch?v=fztNCJy-GXI

OK Cheer, watch all 40 sec. of this. I'm like Bob in waiting for the next "installment" on this thread.
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Postby Loobie » Mon May 11, 2009 5:12 am

And BTW, if you haven't seen that movie, it is classic.
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Postby cheerleader » Mon May 11, 2009 5:32 am

Ha! We love What About Bob...with a teenage boy in the house, Bill Murray rules!!! We watched You, Me and Dupree last night, very funny, sophomoric, and Jeff didn't fall asleep !!!

OK, update: no more nausea, headache is gone except for mild pain on left side (that was the jugular that was really messed up, and needed 2 telescoping stents to open, I just found out yesterday while we were on our walk....oh, by the way, hon... I actually have three stents....)

It was a good mother's day...because it was normal. Kid made us scrambled eggs and toast, we hung out, joked, went for a long walk with the dog, grilled chicken for dinner, watched a movie, laughed...simple things that I will never take for granted again. Jeff was present, aware, with us. Pretty amazing. Our son said, "Dad seems really good!"

Jeff's up early with me, and said he feels "awake"...this is no small feat. This is before coffee, provigil, supplements, the whole routine he's needed to deal with his fatigue and constant brain fog. We're both on our laptops, the sun is rising, coffee is brewing, just normal stuff most people don't think about twice. To me, it's miraculous.

He had a bit of leg pain last night, and it was sad to see the return of his "familiar friend", but we also went for a three mile walk less than a week after his surgery, so I'm not surprised. ( The lesion on his cervical spine is next to the new stents, and will probably be the one most bothered while his veins are healing.) It's the clarity of his mind that is the most obvious change. And this is so heartening.
Cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Mon May 11, 2009 6:59 am

Awesome
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Postby mrhodes40 » Mon May 11, 2009 7:53 am

Lew that film clip was perfect! hah!

What great news that every days gets better. To some degree the leg pain is probably related to the lack of healthy nerve input. those nerves may heal completely with time, but in the meantime the demyelinated areas will continue to function in the not so good way. But even now new oligodendrocytes are probably making thier way over to that area....

Time lapse movie of oligo

but now such repairs will "hold" because the new oligodendrocytes won't get whacked again by incoming fluid and immune reaction.
It will take some time for healing!
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 chrishasms » Mon May 11, 2009 8:40 am

Also along those lines....

There are good days bad days with Revimmune too. The way I could tell I was still healing was the bad days were never as bad as my old good days. The recovery is the pits because your nerves will grow scabs and they will fall off. When those scabs are on there things seem to work great but when they fall off you will be a bit slower but it will all come back better than before.

Patience grasshopper. Healing from MS can be just as draining as having it lol.
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