LoobieDoobie's CCSVI stuff

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

Postby Sharon » Fri Jul 17, 2009 11:20 am

Hey, Lew!

You wrote:
it is extraoridinarily painful for me to chew which has definitely cut my calories way down even though I'm hungry

Give this a couple more days and I think it will be okay. My problem was swallowing, so even drinking water hurt. :cry: :cry:
Continue any pain medication that you can -- get yourself as comfortable as possible (this is coming from someone who does not like taking anykind of medication). You being pain free is important. Remember that there has been some nerve damage/readjustment. I beleive it takes 1 week per 1mm of nerve to repair itself --so, it is going to take a few weeks.
Have a safe trip home - try to stay calm -- use the wheelchair at the airport.

Semi- truck or pickup - which one did you run into? :lol: I think we all know the feeling.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Advertisement

Postby Loobie » Fri Jul 17, 2009 7:27 pm

Only a short post here as I'm at "home plate" and exhausted from travelling all day. 5 hours by air, and 2 by car. All in pain, but it started to subside;.....a lot; which is awesome. I have much to tell but must get some rest.

Dr. Dake gave me a call on my way home in the car. Do you want to know what the first thing I told him was? He is, after all, compiling data. As I've said before, he wants it ALL. I told him that all those pain killers and Zofram and all of that could be handled with one Rx. Marijuana. I know some of you can't bring yourself to smoke it be it inhaling problems of whatever, but let me tell you. There is nothing, and I mean nothing that dulls the neck pain and headache. AND completely wipes out the nausea. Today once I got in the car I took one puff of the pipe; that's it since I hadn't had any in a week. That is the only time I've dulled the pain enough to notice anything else feeling any better.

I'll leave you with a Wobbly cliffhanger since my computer chair and station is a whole lot different than a laptop in your lap in bed like I was doing in Cali. I think this just might be the real deal. I know that's about as premature as all get out, but there are just things that I've been dealing with every single solitary day that seem better. More later, I just wish I could not be so wordy!!

Lew
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby bestadmom » Fri Jul 17, 2009 7:36 pm

Lew,

I am so glad you got relief and can now notice improvement. Please be wordy, I'm hanging on every word you write, as I be everyone following these threads is.

Be mellow!
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby robbie » Sat Jul 18, 2009 4:28 am

There is nothing, and I mean nothing that dulls the neck pain and headache. AND completely wipes out the nausea.

:)
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby Loobie » Sat Jul 18, 2009 6:08 am

Quick "quantifier" post. If I'd have tolerated the morphine and perc. I probably would have been just fine. But I didn't, which left me Advil as an option. Now I have 800 mg Ibuprofen that are great for pain, but na baby na, they inhibit the warfarin, so two Advil is the max, and only every six hours. Well that would only dull it out for an hour or so and then I'd get the pain and the nausea that comes from being in that much pain. So my 170 pound butt lost 14 pounds in six days. Some of that was due to the 28 hours fast, but most was due to the fact that I was nauseous.

So to quantify, use the drugs if you can tolerate them, they do work on the pain. But if you don't react to them well like I did, MJ is a really, really good alternative, and it let me eat with abandon. And since it's legal out there, I think he could keep in his bag of tricks for people like me. I mean I don't even take sudafed because of the side effects. Drugs have always screwed me up. The warning labels on my drugs should not say "may cause" the should say "will cause" :lol: .

So once I smoked a little and was just feeling really good and up and about, I noticed one thing that is huge because is usually is what triggers my downhill slide for the rest of the day. Since I can't catcher's squat, I bend at the waist to get things like pots and pans from the lower cupboards. Well that would ALWAYS, without exception, cause the following: vision would "close in" (seeing stars and get tunnely), I would swoon upon getting back straight, and it would invariably start to get me dizzy, and once that trigger was tripped, my day usually couldn't be regained. Well I don't feel that at all right now. I bend over and just straighten back up. No vision pulsing, no heartbeat throbbing in my eyesight, so I think I had back up in the head for sure. I also have more energy. I have always said I didn't suffer from fatigue, but I have more energy, so maybe I did. Legs feel the same and eyesight is still wacky. I'm still in pain right now since I don't smoke during the day. I like the massive relief it gives me in the evening. Hopefully I won't need it at all and can just go back to doing it on occasion and actually having fun with it rather than using it like medicine.

I'm so glad I did this. I am very optimistic that things will change for me as I recover.

Sharon - Thanks so much for the SOMA tip. That stuff really helped me out last night. I was so gun shy to take anything other than the blood thinners since the pain stuff knocked me so hard, but I took one last night and it worked really well. It took all that twitching and tightness out of my shoulder on the stent side and actually allowed me to raise my right arm. I was having problems geting it past straight out, and it helped immensely. I thought that was gone, but it came back on the plane.

For those of you with bladder and bowel that are serious like mine. This procedure requires two stents of not eating, and one of not drinking even water for about 12 hours. This screwed me up, but it's what it took. I compounded it by not drinking much on the plane since I didn't want to sit there in a wet diaper, so if you have a bowel routine and have bladder problems, they will get screwed up, so eat lots of fruits and grains and drink lots of water when you can.

Also morphine causes constipation and I belive percocet does too. I am very, very constipated, but there was not much I could do, but could have done with out the morphine and perc making me not eat. Since medical MJ is legal out there I think Dake should get a vaporizer and have an alternative for those so inclined who are having a rough go with the narcs.

How cool is it to have your surgeon call you on your cell phone when you're on the way home to see how you'r'e doing? I love that guy. It was so good to get home last night. I missed my family bad and that was great medicine seeing them. I'm going to post on my blog later and try and get some pictures on there. When you see some of the pictures of my host's kids putting on dance recitals and stuff for me and my mom, it is just so awesome. No pain could live up the to ducky costume that the 3 year old little girl had on to tap for me. That was some good medicine right there.

I feel clear headed, but I'm not HD like Randi yet, but I also started at a 4.5 EDSS, so it may take some more time.

And here's the kicker. The place I've been working at called me twice to see if I'd be in on Monday! Ha! I told them I need another week. But then my real job that laid me off also called and they got some new work that is utilizing machinery that I'm pretty well versed in, and they want me back full time! This is about the 4th or 5th thing like that that's happened. It's starting to freak me out!

OK, I officially hate my screen angle and that and am going to go get some coffee. I'll post some more as I feel up to it. My wife, God love her, has a few friends coming over tonight for a bonfire and they tell me I don't have to do anything but sit there, so I can't wait for that. A little soon maybe, but people contact is always good chicken soup.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby peekaboo » Sat Jul 18, 2009 6:18 am

Great post lew.

Good to hear you are on the mend and all that yukky stuff is behind you. can't wait to go on your site to veiw pics.

High Altitude Hugs

Holly
User avatar
peekaboo
Family Elder
 
Posts: 627
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby Sharon » Sat Jul 18, 2009 7:39 am

Lew - Great detailed post - the recounting of your story is going to help someone in the future. Your attitude is so positive!! Go back and read your posts from about one month ago -- what a change :)

The neck and shoulder pain are probably going to be with you for awhile, so keep on the SOMA. I probably stopped too soon....I am now back on at 1/2 dosage. I will post some information on the thread "Neck Pain and Muscle Relaxors" http://www.thisisms.com/ftopict-7525.html later on today. I am emailing Dake with the same info.

Also, think about updating the thread "Getting Ready for Stanford" -- we have MS'rs going to Stanford in August...you have mentioned some things on this thread but it would be great if you could repeat over on the other thread.

Have a relaxing weekend -
Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby mrhodes40 » Sat Jul 18, 2009 9:00 am

Hey Lew you sound good! A bonfire will be so nice and you'll sleep better in your own bed even if you don't get a ducky bedtime story!! :lol:

Weird about the jobs when it rains it pours eh?

Ditto on Dr Dake he's just one in a million wonder guy. He is great.

I am glad to hear that your bending down is so different, it is good to happen upon something that is unequivocally different and better makes you feel so great!

Can't wait to hear more of your thoughtful posts.... :D
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby cheerleader » Sat Jul 18, 2009 9:38 am

Lew...
Love to read your reflections, buddy.
Mag citrate (like natural calm) should help you clear the pipes. That got Jeff thru the constipation phase. Also, see if you can change the height/angle of your computer monitor. Jeff moved his up and straight out, so he wouldn't have to angle his neck. He also doesn't have to look at the keyboard when typing, so that helped with the up and down.

Guess it was the pain meds/morphine that made Jeff so nauseous, he almost hurled on the table....Dr. Dake didn't know what it was, but since you had such a violent reaction too, seems like that's what it was. The sick stomach feeling goes away in about a week. Jeff took double strength tylenol, no percoset. No MJ, either. :)

We promise, better days ahead. It's scary the first few days with the bad pain, headache and neck ache....feels like you've taken a few steps back...BUT the clear headed, not dizzy feeling will give you the strength to pull thru. Soon it will be all steps ahead.

Have fun at the bonfire, Lew. We see friends now more than ever. Jeff wants to be social again. Yesterday was a tough day. A memorial service for a 12 yr. old girl who died in a car crash on Saturday. Her parents are dear friends and neighbors...and as any parent can imagine, they are in agony. We went to the outdoor service in the Santa Monica mountains (in 95 deg. heat) and celebrated Alanna's short but beautiful life. Jeff was fine in the heat, and he invited neighbors over after, to sit and be together...they stayed until late in the night, drinking wine, reminiscing, hugging our kids. As my best girlfriend was leaving, she held me and said, "We've got our Jeff back. He couldn't have done this a year ago, and now he's back with us again." We both had another good cry.

keep sharing, Lew
xox,
joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Jamie » Sat Jul 18, 2009 9:52 am

It all gets better from here.

As the world famous wobbly said. THIS IS THE REAL DEAL.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby Jamie » Sat Jul 18, 2009 10:06 am

chrishasms wrote:See I don;t get why the "new" wore off the HiCy either...unless the AI was the egg, we got rid of it, and now the real chicken of MS is this. That makes total sense to me.


Dake thinks the immune component is triggered and prevents healing, not necessarily autoimmune as it is the correct response to the damage just in a place where the immune system, t cells, b cells isn't tolerated well. I.e. CNS.

Saying the same thing really.

Why not get rid of both?
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby peekaboo » Sat Jul 18, 2009 10:22 am

Loobie - Have you had the chance to try Epson Salt for Constipation? Its a cheap alternative to other solustion. a couple of teaspoons dissolved in hot water and the majic begins :roll:
User avatar
peekaboo
Family Elder
 
Posts: 627
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby Loobie » Sat Jul 18, 2009 11:05 am

No, but I will!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users