Notes from CureIous' at Stanford

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

Postby Loobie » Thu Aug 06, 2009 4:00 pm

You guys are making me jealous as hell!!!
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Postby Jamie » Thu Aug 06, 2009 5:11 pm

Motrin helped Mel more than the percs.

Mark that is aces.

Mel had the same ear pressure thing too!

She also had dramatic almost instant improvement.

Brilliant.

Lew - we may be at follow up when you are there we're trying to get a date for it. It'd be cool to meet up if we were all there!
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Postby Loobie » Fri Aug 07, 2009 6:59 am

Hells yes! Make it happen dude. I want to meet you guys! In case we never talk about it again, I PM'd you my cell phone number.
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Postby mrhodes40 » Fri Aug 07, 2009 7:27 am

FYI I specifically asked the good Dr. about Motrin/Ibuprofen vs. blood thinning etc. before I left and he said, "Where did you hear that from?"


Mea culpa on that one :oops:

I am sure I posted something along those lines on this forum; it is common advice for patients on coumadin for two reasons, one the clotting cascade is affected by NSAIDS in a different way than coumadin so it can increase the INR, two the stomach lining can be irritated by the NSAIDS to the point of a small ulcer and bleeding can occur because of the coumadin. My own doctor said absolutely not on the NSAIDS in my case, but obviously your own doctor or Dr Dake is the final word. Clearly there are different opinions on this issue. :?

But really great news for people who need better/different pain management. I would have appreciated some aleve myself and was sad it was not available to me....

for reference :

You should not take acetaminophen (Tylenol), aspirin, or NSAIDs (non-steroidal anti-inflammatory drugs) unless your doctor has told you to. NSAIDs include celecoxib (Celebrex), diclofenac (Voltaren), ibuprofen (Motrin, Advil), indomethacin, naproxen (Aleve, Naprosyn), piroxicam (Feldene), and others. These medicines may affect blood clotting and could cause serious bleeding in your stomach or intestines


from HERE
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 CureIous » Fri Aug 07, 2009 9:42 am

No mea culpa required, I said nothing, mum's the word! I'm good at changing the subject! :)

What are side effects of NSAIDs?

The major side effects of NSAIDs are related to their effects on the stomach and bowels (gastrointestinal system). Some 10%-50% of patients are unable to tolerate NSAID treatment because of side effects, including abdominal pain, diarrhea, and upset stomach. Approximately 15% of patients on long-term NSAID treatment develop ulceration of the stomach and duodenum. Even though many of these patients with ulcers do not have symptoms and are unaware of their ulcers, they are at risk of developing serious ulcer complications such as bleeding or perforation of the stomach.

The annual risk of serious complications is 1%-4% with chronic NSAID treatment. The risk of complications is higher in elderly patients, in those with rheumatoid arthritis, patients taking blood thinning medications (anticoagulants such as Coumadin and heparin) or cotisone-containing medications (e.g., prednisone), and patients with heart disease or a prior history of bleeding ulcers.

How do NSAIDs work and how do they cause stomach problems?

Prostaglandins are natural chemicals that serve as messengers to promote inflammation. By inhibiting the body's production of prostaglandins, NSAIDs decrease inflammation. However, certain prostaglandins also are important in protecting the stomach lining from the corrosive effects of stomach acid as well as playing a role in maintaining the natural, healthy condition of the stomach lining. These protective prostaglandins are produced by an enzyme called Cox-1. By blocking the Cox-1 enzyme and disrupting the production of prostaglandins in the stomach, NSAIDs can cause ulcers and bleeding. Some NSAIDs have less effect prostaglandins in the stomach than others, and, therefore, have a lower risk of causing ulcers.

If a stomach ulcer is detected, how is it treated?

Treatment of NSAID-induced ulcers involves discontinuing the NSAID, reducing stomach acid with H2-blockers (e.g.Zantac, Tagamet, Pepcid, Axid) or, more effectively, with proton pump inhibitors, such as omeprazole (Prilosec) or synthetic prostaglandins (misoprostil or Cytotec). Since H. pylori bacteria is a common cause of ulcers, eradication of the bacteria with a combination of antibiotics may also promote ulcer healing.

Can NSAID-related ulcers and complications be prevented?

NSAIDs are valuable medications for patients with inflammatory arthritis and other inflammation of body tissues. For patients who need long-term NSAID treatment, several steps can be taken to decrease NSAID-related ulcers and complications. The risk of ulcers and complications tend to be dose related. Therefore, the smallest effective dose of NSAIDs is taken to minimize the risk. NSAIDs might be selected that have less effect on the stomach production of prostaglandins. Some of these NSAIDs are called selective Cox-2 inhibitors. Cox-2 inhibitors block the Cox-2 enzyme that produces prostaglandins of inflammation without blocking the natural prostaglandin production of Cox-1 in the stomach. Taking NSAIDs with meals may minimize stomach upset with NSAIDs but not ulcerations.

A synthetic prostaglandin, misoprostol (Cytotec), can be administered orally along with NSAIDs. Misoprostol has been shown to decrease NSAID-induced ulcers and their complications. The side effects of misoprostol include abdominal cramps and diarrhea.Misoprostol is also avoided in childbearing women because it can cause uterine muscle contractions and miscarriage. H2-blockers and proton pump inhibitors have sometimes been used in reducing the risk of NSAID-induced ulcers. Their effectiveness is still under study.

Scientists are actively searching for safer NSAIDs that are effective anti-inflammatory agents but are not ulcer producing. In the meantime, patients who need long term NSAID treatment should be closely supervised by a doctor. Patients at risk of NSAID-induced ulcers and complications should consider preventive measures, such as using NSAIDs with less stomach prostaglandin disrupting effects, or misoprostol. Stopping smoking, and eradicating H. pylori may also be helpful. A variety of safer and more effective NSAIDs are available.

http://www.medicinenet.com/nonsteroidal_anti-inflammatory_drugs_and_ulcers/article.htm


Thought I would toss in the prostaglandin connection, as most think it's the "gritty" nature of NSAIDS that cause ulcers.

That being said, and this is good for the newbies to consider, is YOU make the decision on what does and does not enter your system, medicine, surgical procedure or otherwise. For instance, when the nurse brought me my meds the morning of discharge, I asked what all I was taking instead of just downing them. Went thru every pill, this is your right and you are well to avail yourself of that right.

Turns out one of them is some kind of zantac type deal to inhibit stomach acid yadda yadda. Hey take it if ya want but I saw no need for it, I was eating fine and felt fine digestion wise.

If one has considered things and talked it over with their doctor and come to a decision, then that is that. I understand the doctor's reasoning insofar as the trade off, reducing inflammation at the stent site may be a good trade off for less blood thinning. Just my opinion. I'll get my labs on Tuesday so will see what the story is. I'm not taking 800 mg IB's heck no, no way no how, rather am just doing 400 over the counter stuff, spread out over the day. I got a stomach ulcer from these a long time ago but wasn't aware of the possibility, and was taking 1000 mg's in the morning for back pain. Yikes! No wonder!

Mark.
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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My Jugular Picture..

Postby CureIous » Fri Aug 07, 2009 12:29 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:18 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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Postby peekaboo » Fri Aug 07, 2009 12:39 pm

You handsome devil you :lol:

Great Pic Mark. Thanks for sharing and also some earlier advise where to go to get copies. I am going to Standford Aug/13/14 for my follow up.

How ya feeling?
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Postby CureIous » Fri Aug 07, 2009 2:30 pm

Hiya Peek!

Yesterday and the day before were a blur. Today I am tired. Probably the thinners kicking in, and maybe because I stayed up til 2 a.m. last night lol. Hey it was a good day, and us MSers learn to take full advantage of good days! My right side hasn't hurt since the surgery, I can't feel any owwie there. Left side flares up then I pop 2 Advil and that knocks it down. Maybe half a perc every now and again. I know carrying a conversation isn't anywhere near as laborious as it used to be. "What was I saying?". Short term memory is returning with a vengeance, I think I can FINALLY win vs. the wife over what I said/didn't say! lol. The tinnitus in right ear is still completely gone, but due to my stovepipe/radio antennae on my left side, can now pick up a variety of AM stations, depending on orientation. Sweet!

I forgot to mention too for the benefit of info-relay that I did have The Headache post operative but it had cleared up by the morn. I'm enjoying sleeping on my right side again too.

Noises don't bother me as much anymore either.

Let's put it this way, if I had the chance to do it all over again, I would have done it sooner. But that's just me......

Mark.
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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Postby peekaboo » Fri Aug 07, 2009 7:35 pm

CureIsous_

?". Short term memory is returning with a vengeance, I think I
can FINALLY win vs. the wife over what I said/didn't say! lol.


This should your greatest triumph...We women never forget.... :) I suspect that your wife is standing by you and only good things ahead!

Holly
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Postby CureIous » Thu Aug 13, 2009 5:33 pm

My first INR came in today, no shocker, it is at 1.5.
GP wanted Coumadin 3x a week at 7.5 mg and 4 days of 5mg but Dr. Dake said daily at 7.5 mg. FYI only. 7.5 mg a day it is. Question: are people here getting weekly or biweekly testing? My GP wanted another test in 2 weeks, myself I would rather weekly til it gets to proper level but that's just me. Comments? Thanks.

Mark.
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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Postby Loobie » Thu Aug 13, 2009 6:10 pm

My GP says I can do it every other day if it makes me feel better, but he has me coming in once a week.
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Postby skydog » Thu Aug 13, 2009 7:46 pm

I have been testing every two weeks. Doing a little home test in the middle by watching how my daily scrapes and bruises act. I am bleeding and slightly bruising with a 10 mg dose. 7.5 daily put the Last INR at 1.4 Going in tomorrow for one more test before I head south to see Dr. Dake the end of the month. Hope it is working for me. I will be asking what options we have like add supplements or Heparin. Cheers, Mark
Plant a BIG Garden Live in the Moment
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Postby Sharon » Fri Aug 14, 2009 10:14 am

Mark - my GP tested me every week until my INR stabilized in the 2.5 to 3.0 range - then it was every two weeks.

To the other Mark (Skydog) you wrote:
I will be asking what options we have like add supplements or Heparin.

Question to you - why are you thinking Heparin? Marie and I are now on 1 baby aspirin a day. I think that if your stents are doing their job, Dake will suggest that you take 1 baby aspirin. I asked about LDN - he told me to take it if I wanted to - other supplements, what ever I thought made me feel better.

To both of the Marks - how are you guys doing?
Sharon
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Postby CureIous » Fri Aug 21, 2009 11:32 pm

Just as a matter of course, my latest INR on an "upped" dosage of 7.5 was a 1.8. Getting there. Energy level is flagging to be sure, think that's the thinners, not like normal MS fatigue because mind is still sharp, which usually when I'm having a flare-up for regular MS fatigue my brain goes on permanent vacation. Arms and legs don't feel like they have 100 pound weights strapped to each, so no, not normal fatigue. Ran all over an amusement park with the rugrats yesterday so can't be doing too bad...

Sure do miss Holly. Barely got to know her. Mark.
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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Postby CureIous » Wed Sep 02, 2009 8:42 pm

FYI Dr. D. bumped my Coumadin to 10mg/day and after 3 days of that my INR hit 2.2 and 20.7 on the PT. I am now, per his instruction, going to 12.5 and 10mg alternating days. Seeing the blood going into the vial it really looked watery. Yuk.

FYI my follow up is tentatively scheduled for October 12th Monday. Hopefully will be able to catch up with someone then? I'll probably be going by myself, driving there and back.

Go Cat!

Mark.
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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