Akaheather's Turn

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

Postby cheerleader » Thu Oct 08, 2009 7:24 pm

akaheather wrote:The results are in .... Stenosis in high right jugular, probable stent in lower right jugular and possible stent in left jugular. Surgery tomorrow! Yikes!


Thinking of you, Heather. Glad you got some answers, and will pray for healing-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Fri Oct 09, 2009 5:49 am

Best of luck Heather, you will be in my thoughts :)
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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Postby Rokkit » Fri Oct 09, 2009 8:58 am

Best wishes Heather! I guess I missed the film crew by a day or two, THANK GOD! I am a card-carrying introvert.
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Postby Sharon » Fri Oct 09, 2009 10:30 am

DITTO on the pain meds Heather. Do not try to "tough it out".

Take care -- next phase is HEALING!

Sharon
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Postby akaheather » Fri Oct 09, 2009 3:36 pm

Thank you so much for the well wishes. I got out of surgery at 1:00 and I've gone from feeling like I've been hit in the back of the head by a two by four to totally nauseus to major soreness in the back of my head/neck and jaw area. In my opinion, this pain is totally bearable. However, I AM a woman AND I'm from Texas, so take that for what it's worth. (I was worried that the pain would be in the front and knock me out like a migraine.)
I also ended up with 3 stents, one high right and two left. I still can't believe it...we are living in exciting times.
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Postby cheerleader » Fri Oct 09, 2009 4:12 pm

akaheather wrote: In my opinion, this pain is totally bearable. However, I AM a woman AND I'm from Texas, so take that for what it's worth.

:lol:

you're hysterical, Heather (maybe it's the meds?)...rest up, and keep us posted!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Oct 09, 2009 4:38 pm

They grow 'em tough in Texas :D

Thanks for sharing Heather.
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 catfreak » Fri Oct 09, 2009 5:05 pm

Heather,

Great to hear you are managing well. It doesn't that you are from Texas and are tough!!

I came home on no pain meds at all because I has rather hurt as be nauseated.

Keep us posted.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby akaheather » Sat Oct 10, 2009 8:36 am

Well last night was pretty brutal. Of course, anyone who has ever stayed overnight in a hospital already knows this, but it does need mentioning. My head was pounding last night and it was not fun. That being said I do feel way better this morning, but I am ready to go home!
Thanks again for your thoughts and prayers.

Heather
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Postby Sharon » Sat Oct 10, 2009 8:40 am

"Easy does it" as you head home Heather. Glad to hear you were feeling a bit better after your stay in the hospital.

Sharon
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Postby Jamie » Sun Oct 11, 2009 1:05 pm

Onwards and Upwards!
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Postby sewwhat » Mon Oct 12, 2009 1:14 pm

Glad to hear you are doing well :) take it easy ~ tc
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Postby CNClear » Mon Oct 12, 2009 2:23 pm

Sending you good thoughts, energy and prayers...

Lisa
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Postby akaheather » Sun Dec 06, 2009 8:08 pm

Hello all! I just returned from my two month check up and thought I'd chime in. The quick response is that my stents look great, exactly like Dake wanted them to. So, no more coumadin. (Yeah!)
When I went to Stanford back in oct, I felt pretty good(edss 1-1.5). My hope was then as it is now, to halt progression. After my procedure, I had pretty bad headaches at the base of skull for a few days. They tended to be worse when I was laying down. I have also had shoulder pain. My pain seems to be more centralized in the front of the shoulder, just under the collar bone, on both sides. It is tolerable, but definatly uncomfortable. I also had some pain in my right eye when I turned my head sharply to the left, which lasted for a few weeks.

Overall, my healing process has been relatively smooth.
When dr. Dake asked how I'd been doing, I responded that I had been "quietly uncomfortable". I thought that summed it up pretty well.

On a side note, I just wanted to mention how awesome I think our dr. D is. We were able to talk briefly about how quickly this thing has spread. (insert thanks to TIMS) During our discussion, he pointed to a stack of roughly 300 pieces of paper and said "do you see that? Those are one page e-mails from Canadians!". Wow. With only 365 days in a year, how is just one man going to possibly keep up?
His situation reminds me of the story of the little girl standing on the beach full of washed up starfish, trying to throw them back in the water one at a time in an attempt to save them. (Yikes!)

Heather
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Postby mrhodes40 » Sun Dec 06, 2009 8:29 pm

Heather great news.

Re the collar bone hurting my shoulder has that feeling too. Notice perhaps that if you lay on one side and breathe and think "relax" while moving the arm nearest the ceiling in a gentle windmill circle rolling from back toward the front if it will release a bit...it does on me.

Try to think of a tall spine shoulders back chin up and it may bother you less.

If it still bothers you after time consider getting an EMG to check the spinal accessory nerve.
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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