Getting Ready for Stanford

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

Postby mrhodes40 » Tue Jun 16, 2009 4:05 pm

Let's hear it for Lew!! winner of the longest tube trip contest!!--you get an all expenses not paid trip to Stanford.............

Good post Sharon I can't think of anything to add...
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Postby peekaboo » Tue Jun 16, 2009 6:40 pm

back up a few posts...wheel chair people you can also request and Isle wheel chair to get you to your seat assignment ....assuming its not first class :P
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Postby Loobie » Wed Jun 17, 2009 3:54 am

No music :cry: :x :cry: . I haven't been that uncomfortable in a long time. This is going to be TMI, but I always cath right before going in the tube. Well I hadn't planned on four freakin' hours (they said at the MRI place that they think it's a record :D ) and thank the Good Lord that I was wearing some of those absorbent underwear. I don't think that dude had another ounce of capacity; it was a little heavy when I took it off!. I'm just thankful that day is a memory now........
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Postby Arcee » Thu Jun 18, 2009 9:14 am

Sharon, thanks again for organizing all this info. I am getting my symptom log together for Dr. Dake as you have suggested.

Here's a question for getting ready: did you cut back on any supplements in advance of the surgery? I know that being on coumadin may mean modifying things, but what about prior to that? (apologies if this topic is covered elsewhere, but this seems like the logical place. I have a vague memory of someone stopping something, but I can't find it.)

I can check with Dr. Dake about it, but I figured some of you may already have figured it out. And the advice that Lew got regarding the steroids, i.e. do what you need and don't change things in advance, is probably applicable and may make this question mute, but just to be sure...

I am wondering about: alpa lipoic acid, turmeric, NAC, CoQ10, vit D, vit b12, calcium, multi vit (with E in it)

Thanks for your comments!
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Postby peekaboo » Thu Jun 18, 2009 9:24 am

Hi Arcee -

I didn't change anything before the MRV's. Surgery there will be some restrictions.

After the surgery and at home the doc said do eerything that you did before (supplement, diet etc) although you will be on blood thinners it is best to eat, meds, supps. normally, the way you did before the op...it will be easier to balance the meds accordingly to your system and daily life.

Hope this helped

Holly
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Postby mrhodes40 » Thu Jun 18, 2009 9:52 am

My primary care doctor wanted me off of all things like turmeric ginger etc. Anything with thinning properties she wanted me off of for the two months. That was her preference...

That having been said the general rule with regard to the food that have vitamin K in them like spinach and blueberries, the trick is just as Holly said, to do them the same, so if you eat spinach every day then keep doing that. Just don't suddenly NOT eat it or suddenly start eating it.

however my personal doctor did not take this attitude with regard to the supplements I take even though she recommended them herself. you should probably check with your own doc and see what they want for you.

I guess I am glad in my case we narrowed the suspects; I have a LOT of bruises--guys I have one that is from the middle of the back of my hand all the way covering the lower third of my forearm. It is gargantuo!! My darling husband would never hurt me but I look abused. It is embarrassing. We are checking my blood every 3-4 days too for INR. It is good we do not have anything unpredictable in the mix, like maybe a turmeric bottle that is not as potent as the last one or something like that.

I miss some of my supplements especially like my fish oils...and NAC...
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 Sharon » Thu Jun 18, 2009 10:46 am

I went off any supplement that had blood thinning properties about one week before the procedure.
See http://www.ctds.info/natthinners.html
I also went off LDN about 48 hours before the procedure because it does not work well with pain medications. Dr. Farzanegan (Dake's sidekick), asked me to stay off of it until my follow-up - LDN also has blood thinning properties. Currently, I am just taking Calcium, and then NAC about every third day because of my Tylenol usage. I am using the sun to get my Vitamin D. I am continuing to eat a healthy, well-rounded diet which includes a handful of blueberries each day - this is nothing new for me. I miss the fish oil also Marie - my skin is drier than usual. I may ask my GP on Monday if I can add it back to my diet. I will get another blood draw on Monday.

Bruises????? - How can you go to bed and have nothing on your arm, and wake up with a three inch black and blue circle ? :cry: :cry:

Sharon
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Postby chrishasms » Thu Jun 18, 2009 12:36 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 1:55 pm, edited 1 time in total.
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Postby Sharon » Thu Jun 18, 2009 1:17 pm

Thanks, Chris - I forgot to look at the ads yesterday - I am on my way to Kings
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Postby Arcee » Thu Jun 18, 2009 2:48 pm

Thanks for the feedback. My PCP does want me off stuff after the intervention (assuming it happens), but it may be wise to start a bit before and I had not discussed that with her.

I have to say, one of the things that most concerns me is the bruising. I bruise bad enough now anyway, so I can only imagine. Are the adjusting the doses because of the bruising?
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Postby mrhodes40 » Thu Jun 18, 2009 4:44 pm

the doses are adjusted according to the lab tests we want to be maintained between 2 and 2.5 INR. The bruises are a side effect of having such thin blood and being a wobbly person as I am in my case. I jus bang myself a lot and every single thing bruises where usually it does not

Here's an example I was walking through the bedroom door and lost my balance a little so put out my arm/wrist to catch myself on the door jamb so I would not fall, and the pressure of the wrist pressing on the jamb, I can't think how to try to quantify it for you but it was not a hard "fall" that I caught my whole weight, I was off balance and just had to catch maybe 1/4 of my weight to rebalance--so not something that usually would bruise. But I have this huge bruise including half of my hand and 1/3 of my forearm every color of the rainbow. This is temporary though and I am not knowing how being on plavix will be bruise wise I assume much better. but it is an issue. One has to think about these things and know what you are signing up for. talk to your doc and be clear what it is all about and what will happen
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 » Thu Jun 18, 2009 7:12 pm

I guarantee that I will look like a freak after about two days. I don't bruise easy now, but I slam into the corners of walls contantly. That's one of my favorite things. I just turn too damn early!! I'm sure you all know what I'm talking about there. I'm going to have to duct tape pillows to all the corners of my walls.
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Postby Jamie » Fri Jun 26, 2009 5:07 pm

Bump.
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Postby mrhodes40 » Fri Jun 26, 2009 5:44 pm

Well I will add to this thread then I am using a rollator around the house for goodness sake. I am usually a wall walker but I need the extra support right now..
and Sharon YES....how can we go to bed and wake up with a bruise??? how does that happen??
we're worse than bananas 8O
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 » Tue Jul 14, 2009 7:07 am

Bumping this one.

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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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