Catfreak's Trip to Stanford!!

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

Postby bestadmom » Thu Sep 03, 2009 8:08 pm

Congrats on your surgery and being able to post from recovery. That's a great sign.

Michelle
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Postby LR1234 » Fri Sep 04, 2009 2:27 am

I wish you a speedy recovery Cat (in more ways than one :wink:
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Postby mormiles » Fri Sep 04, 2009 6:30 am

Good morning CINDIIIIIIIIIII!!!

It may not be a pleasant day, but it IS the first day of the rest of your life. Can't wait to hear more.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby catfreak » Fri Sep 04, 2009 8:30 am

I had a rough day and night. Did not sleep much at all.

My potassium is very low and had to drink liquid potassium and have IV potassium prior to surgery. One of them made me deathly sick.

Surgery was way longer than normal. I had some form of cyst/granduloma thing in my right jugular the size of a gum ball that he had to get rid of. It was congenital he thinks. I have 2 stents but not sure where they are.

Dr Dake told me several times I was different. He told my husband he was worn out. He is so wide open in the OR and gets very excited when he finds something new.

My head and neck hurts and I do not tolerate pain meds well at all.

Dr Masti (her nickname) came in and checked on me and said Dr D would be in later to release me. I will find out about the coumadin then.

Will post later.

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 LR1234 » Fri Sep 04, 2009 8:34 am

I am sorry you had such a hard time in surgery but at least it is over now. Take it easy and try to do as little as possible x
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Postby cheerleader » Fri Sep 04, 2009 8:45 am

oh, Cat!
We already knew you were special....but I'm so sorry the surgery was long and grueling. Glad your jugulars are open and flowing now! Rest, rest and more rest and keep us posted. Sending healing thoughts and prayers,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Fri Sep 04, 2009 9:23 am

One suggestion if you're up to it is to ask from some MJ. Not sure of your take on all that, but it's legal there medicinally, and I can tell you first hand that it's excellent for the pain. I hope you feel better soon Cat, those pain meds, when you don't tolerate them well, almost make you worse.
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Postby Needled » Fri Sep 04, 2009 9:28 am

Cat, I'm sorry you're hurting and you had such a bad night. But try to concentrate on the fact that is behind you now, and you (and we) will hope that every day gets better. I've lost track now of how many "different" things he's found. While that doesn't normally sound good, I think in our case he's just learning so much from every patient, it is a good thing. (Easy for me to say, I know, I haven't had the surgery.)
Sending lots of positive energy your way for a quick and healthy recovery.
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Postby scorpion » Fri Sep 04, 2009 9:45 am

Hey Cat,

I just wanted to let you know you are in my thoughts!
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Postby whyRwehere » Fri Sep 04, 2009 10:02 am

Get well soon. :)
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Postby radar22 » Fri Sep 04, 2009 12:07 pm

Hi Cat Freak!!!

Happy to see your post. Try to rest. I agree with Loobie, that might be an option.

Well, take care, ttyl.

:) Cindy aka Radar
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Postby bestadmom » Fri Sep 04, 2009 12:36 pm

Hi Cat,

I hope you feel better and get a good night's rest tonight. Sleep and hospital and polar opposites. I hope that as the discomfort subsides, your MS symptoms do too.

Looking forward to hearing from you soon.

Michelle
Last edited by bestadmom on Fri Sep 04, 2009 3:24 pm, edited 1 time in total.
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Postby catfreak » Fri Sep 04, 2009 3:20 pm

Hi,
Back at the hotel for some rest. I wanted to get outside for a while so we walked to the Walgreens to get my prescriptions filled which may have been a bit too much of a good thing. Then caught the Maurgarite back to the hotel and I had to lie down immediately!!

I am on Coumadin :cry: :cry: but that what the doc said and he is "THE MAN" and I trust him completely. I don't think he is stopping the coumadin treatment at this point at all.

Now for what made me "different": I had an Arachnoid Tissue Cyst in my Right Sigmoid Sinus the size of a gumball. He put a stent there beneath the temporal bone, very high. He said he thought my right jug was carrying all the load but found that this cyst was blocking my right jug and the very narrowed left jug was actually having to carry all the load. He has never seen this before.

From Wikipedia:

Arachnoid cysts are cerebrospinal fluid covered by arachnoidal cells and collagen that may develop between the surface of the brain and the cranial base or on the arachnoid membrane, one of the three membranes that cover the brain and the spinal cord. Arachnoid cysts are a congenital disorder and most cases begin during infancy; however, onset may be delayed until adolescence.

The sigmoid sinuses (left & right), within a human head, are 2 areas beneath the brain, which allow blood veins to span the area, from the center of the head downward. They drain from the transverse sinuses (under the back of the brain) to the internal jugular vein.

Each sigmoid sinus begins beneath the temporal bone and follows a tortuous course to the jugular foramen, at which point the sinus becomes continuous with the internal jugular vein.

He put a stent in the left jug around the lower ear. Then he ballooned a place in my chest that was narrowed. I assume where the jugs meet. I think I was in the OR about 3.5-4 hours. He said I was his "poster child" for strange things.

That's all I can think of now. Back to resting.

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 Jamie » Fri Sep 04, 2009 3:29 pm

Firstly, well done Cat! Things will only get better from here.

Secondly, more evidence for this being a congenital disorder of the CNS venous system.
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Postby CureIous » Fri Sep 04, 2009 3:38 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:25 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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