Catfreak's Recovery Notes

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

Postby Jamie » Tue Sep 15, 2009 8:34 pm

4.2 !!!

No wonder you felt crappy!

Mel had a 'set back' when hers went over 3!
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Postby CureIous » Tue Sep 15, 2009 9:04 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:46 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 catfreak » Wed Sep 16, 2009 10:03 am

Curious wrote:

Gosh 4.2 I don't know how you do it! Pay attention though to the few days you are off of it if you feel better or not. I know I did!


I guess I didn't know any better. I have such fatigue with my MS that it just me feel the same a normal for me.

I felt so bad last night. We were suppose to go to a church service to hear our nephew preach and I just could not do it. I feel better today and hope we can go tonight.

My neck is doing really good, just stiff when I wake up. My headache comes and goes as does the ringing in my left ear that was gone for several days but has now roared it's ugly head again at night when I try to sleep. :evil: :evil: :evil:


Another thing is I don't seem to have as much numbness and tingling in my arms and legs and feet.

I still have the herky jerky spasms in my hands, arms, legs and feet.

Thanks to some Probiotics I started taking about 1 1/2 weeks prior to surgery and continue to take, my bowel issues are much better. :oops: :oops: :oops:

Better days ahead!!

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 radeck » Wed Sep 16, 2009 10:17 am

redundant - removed
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Postby CureIous » Wed Sep 16, 2009 11:37 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:45 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 catfreak » Wed Sep 16, 2009 12:44 pm

Radeck,

To add to what Mark said:

I was taking Adderall for MS fatigue and I am no longer doing this. That must be a good thing. And this fatigue is just that pure crappy fatigue. I still have issues with heat right now. I hope that gets better.

I sure hope when of the blood thinner the buzzing/ringing noise also goes away. Last night was awful.

So, I can't wait for no more blood thinners and more energy.

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 catfreak » Fri Sep 18, 2009 6:49 am

Friday 9/18/2009 2 weeks after procedure.

Yesterday for me physically was a bummer.

My left ear rang all day, which is hard to handle when it's been gone during the day and then comes back while you are trying to work.

I was so tired all day. I can't seem to get out of California time. Midnight here still feels like 10pm and I am still up on the computer or watching TV. I have to get up and work so that is not nearly enough sleep for me. I also take ambien and it's great once I go to sleep but has never helped with the getting to sleep part.

My BP was a bit high but went down later, It's 117/84 this morning. My pulse was 110 yesterday and it back down to 85 today.

I just felt like screaming all day. Just wanted to cry very emotional for some reason. My head hurt all day.

I had to get out yesterday evening and go to the drug store and Wal Mart and the Grocery store which took all the energy I had. The humidity is 100% and I hate it.

My husband was upset and I told him he has to remember that I still have MS and I had a Tysabri Infusion Monday which could have something to do with it. Everybody has bad days, right?????

I hope today is better.

The highlight of my day was hearing Lew's post! Sooooo positive!! Ready to hear from Tracy and Coach!!

Maybe my occlusion that Dr Dake did not attempt, since was so high on the left side and at more than a 180 degree crook is going to have to be fixed and they will know more how to handle this type later. We will see.

Sorry if I dumped on anyone's day. I had a bad day, that's all.

Better days ahead!! :) :)

Cat[/b]
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 Rokkit » Fri Sep 18, 2009 9:26 am

Hey Cat, sorry about this. It would be great if everyone could have the immediate improvement that some have had following treatment, but I guess it isn't going to be that way. More and more, I'm thinking the goal is just to get to the end of the coumadin and then start thinking about improvement. Better days are ahead.

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Postby chrishasms » Fri Sep 18, 2009 10:14 am

123
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Postby CNClear » Fri Sep 18, 2009 10:23 am

Hi Cat...I'm sorry you haven't been feeling as good lately, but I'm sure that it is only temporary...it's going to take a while to undo the damage that has been happening for years...

Sometimes, we all feel like crying and sometimes we do cry...so go ahead and 'dump' any time you feel like it...studies say that even the act of telling someone, does actually do you good...

I'll be happy to listen good or bad or something else...dump away! Get ALL that bad stuff outta your head!

Lisa
aka, CNClear
diagnosed since 1983
50 years old
waiting for my turn with Dake...
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Postby cheerleader » Fri Sep 18, 2009 10:40 am

Cat...
Hang in there, honey. You've just been thru major surgery. Try to take it easy. I know others have said the ear buzzing was related to how high their INR was...yours was sky high. Here's to hoping the buzzing calms down when your blood pressure and INR are regulated.
Jeff had some really bad days in the first several weeks with shoulder and neck pain, and believe me- I felt so guilty for bringing him into all of this. But now we're further along the path, and I can tell you there is healing ahead. Yes, you do still have MS...and you have to take care of yourself. It took a long time for your body to manifest signs of your problem veins...it will take time and patience for healing....but it will come.
sending prayers,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Fri Sep 18, 2009 11:14 am

Thank you all for the support.

I just hate to be negative because I feel like what I say may influence what other think about CCSVI and all. But the truth is the truth.

I do feel somewhat better today and want everyone to know how much I appreciate everything and I would not go back for a second and change what I did.

Love you all so much!

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 Loobie » Fri Sep 18, 2009 11:39 am

Cindi,

Joan is spot on. You've just been through major surgery and sometimes that just gets overwhelming because sometimes after the first round I would scream at the world because it was just so painful to hold my own head up. I think we have been so used to being disabled that it's hard to separate the post surgery stuff from the MS stuff, so it all just goes into one pile. I had those days ALOT during my first 8 weeks.

Take it from someone who got the full monte; high stents, bad reaction to ALL the drugs, and feeling MS'y. It gets better. Buyer's remorse crept in on those days, but all I had to do was think of just going downhill with progression to snap me out of that. I actually wrote down all that "happened" during surgery because my pee brain, at times, made me feel like my MS was getting worse when I was just dealing with post surgery stuff. So I had to write it out to 'separate' the MS from surgery. Nothing in my MS gave me that neck pain and those "skull headaches", so the act of writing down all my aches and pains and what they were attributable to really helped me make the separation.
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Postby Rokkit » Fri Sep 18, 2009 11:49 am

chrishasms wrote:I think it's after the 2nd appointment. Then you'll know for sure.


That's a good point. It does seem that when people go back that's when they are finding out either A) everything is going as planned, or B) we have a little more work to do. But I don't think anyone is hearing C) well, that was a total bust. I think it was skydog that had the additional stenosis crop up which sucks, but I wouldn't be surprised if Dr Dake figures out what's up with that pretty soon too.

Rokkit
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Postby catfreak » Fri Sep 18, 2009 1:46 pm

I have my Follow-up on the 3rd of November. Gotta start planning for another trip to Sunny California!!

I hope we get to take in some sites on this trip!

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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