Rhonda's Consultation and Surgery DAY!

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

Postby Sharon » Sun Oct 25, 2009 8:15 am

Wonderful news Rhonda! - Glad you are back home safe and sound.

you wrote
...I have lost the constant right-sided pain that I have lived with for 6 years


Interesting --- where was the pain? I had a lower back pain on my right side - it was gone the day after surgery and has not returned. Remember you are on pain medication -- see if the pain comes back after you get off those.

All is good news!
Sharon
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Postby magoo » Mon Oct 26, 2009 10:53 am

Today I had my coumadin check...4.5! My doctor here was completely flustered by the fact that I had done the surgery. He was so alarmed about potential complications. He didn't know who he would send me to because no one knows about this procedure. We talked it through and I guess I have to ask a few more questions of Dr. Dake.
I am feeling really GOOD! No pain, (even without pain meds) no stiffness, and I feel awake. It's so nice! My dreams have been unreal. They are so colorful and amazing. My right shoulder is just a muscle problem my doc thinks, so I'll keep some heat on it and maybe some massage. I know it's early, but I'm happy. I feel a billion times better now that a week has passed. No more nausea and the headaches are manageable.
Thanks to everyone for your support!!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby radeck » Mon Oct 26, 2009 11:54 am

That's good news, as you seem certain that this is not just a fluctuation in your MS symptoms.
Last edited by radeck on Sat Dec 19, 2009 12:17 pm, edited 2 times in total.
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Postby Sharon » Mon Oct 26, 2009 12:56 pm

Rhonda -
My right shoulder is just a muscle problem my doc thinks, so I'll keep some heat on it and maybe some massage. I know it's early, but I'm happy


Watch the shoulder issue - if you are like me - I was unaware the muscle was spasming - the moist heat is good ---- massage and if need be, get a muscle relaxant for a few days.

All sounds good - glad you are feeling better.

Sharon
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Postby magoo » Mon Oct 26, 2009 1:01 pm

Thank you Sharon for all of the support and great advice :):)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Fri Oct 30, 2009 3:14 pm

Hi Rhonda! Anymore to tell us?? Did I read you are doing house cleaning?? What do we have to do to get a break from this?? I know having MS isn't enough. Isn't having stents enough, at least for a couple of weeks? My daughter thinks I should say I can't do certain things because I will dislodge a stent. I don't even have them yet, and she is giving me this guidance. Funny kid.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Fri Oct 30, 2009 3:34 pm

Seriously, I wanted to clean, and it felt so good not to get exhausted! My husband keeps telling me to take it easy:) I have been doing that too!
Today I had less of the headache. I went to the school this morning and watched both of my boys read their "writer's workshop" stories. Two things are amazing here...First, I had to get going by 7:30am which is usually impossible for me. And second, I was in the classrooms for 3 hours and felt good. I would never have been able to do these prior to the surgery. I also had the second person in my neighborhood tell me I looked different today. Different meaning, good and more awake! Then I went shopping for a halloween costume, then I met my husband for lunch, then I went to the docs for my blood test, then I trimmed bushes and raked leaves....................what!!?? I did a lot!!!!
Right now I have absolutely no pain and I'm looking forward to Halloween!! I have a soccer game, a football game, and then our neighborhood goes crazy on Halloween with lots of parties and fun!
PHEW! Thank God I had this surgery!! :):):)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Fri Oct 30, 2009 3:58 pm

Wow! That is all I can think of! Wow!
That is amazing. That is a lot of energy! Kiddos classes for three hours! That takes energy. That is such an over stimulating sort of environment. Bless your heart. Make sure you are getting some breaks and be careful with that yard work.
Have a great weekend!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby CRHInv » Wed Nov 04, 2009 7:52 am

Rhonda, What's up? Let us know how you are.... if you have time!! :D
Take care, Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Wed Nov 04, 2009 8:19 am

Hi Beth! Love the picture!!! It's nice to put a face with the name. Maybe I'll do it??
I've been a little tired after the weekend. I just posted about trying to wean myself off of some meds and I think this is contributing.
My headache is still on my left side, but it is easily treated with Tylenol. The left shoulder is getting better each day, but is still a little tight. None of this has stopped me from going out or doing things. I am still SO much better since the surgery! My husband and kids have told me how much better I am. Love it!!
It's been hard to not worry about the fatigue coming back. So when I feel tired...my alarms go off and I try to figure out if it's normal. It's difficult since I haven't felt normal fatigue in over 6 years. I tell myself that everyone gets tired, right?!
I still feel none of the constant pain I lived with. I still feel sharper and able to do multiple things without it overwhelming me. I still have not needed a nap during the day! I even had a "Cash Cab" challenge with my husband and won! Things are so improved!
I am thinking of you as you get ready to begin your journey!!!! I wish the best for you!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Wed Nov 04, 2009 8:53 am

Cash Cab??!! Were you really in the cash cab? CRAZY!
Yes, do the picture! I had tried a few times before and it didn't work, or more likely, my brain just wasn't quite working. Went right in this time. Who knows?
Normal fatigue, yeah, I wonder what that is. That is hard to figure out. I hope you listen to your body and take the breaks you need to keep healing. That is really easy to say, over here. Do me a favor and say that back to me in a few weeks, okay?!
Well, I hope that headache goes away soon. Awesome news about people noticing you look better. I honestly think I look at least five years older in the last year. Everyone around me is too kind to mention it though. I bet just your more rested appearance is the key, you think? Ohhh, I hope I get some of that!

Keep healing! Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Fri Nov 06, 2009 7:35 am

Haha no, I wasn't in the cash cab!
Yesterday I shopped and was wiped out when I got home. My headache on the left side is back with a vengence. I had to rest for the first time yesterday:( :(Also, my arms, shoulders and legs have been aching. I'm a little freaked out.
I'm sure it's the "2 steps forward, one step back" recovery stuff Cheer talked about. I hope.
Does anyone know why the strong headache would be back? Is it something I should bug Dr. Dake about?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby cheerleader » Fri Nov 06, 2009 7:43 am

Rhonda-
Those headaches come on and off while fluid levels are adjusting. Jeff had them once and a while for three months. Remember, your body has been thru an invasive procedure, and inflammation and fluid levels are in flux. Make sure to get good rest, LOTS of hydration (this is a must) and good, whole foods. Jeff said the warmth on the shoulders feels really good, too.
Hang in there...better days ahead,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Fri Nov 06, 2009 8:02 am

Thanks Cheer!!!
It helps to understand. I certainly have not been resting enough or drinking enough water. Thanks for the reminder, I really appreciate it:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby mrhodes40 » Fri Nov 06, 2009 12:08 pm

If I had a wagging finger smiley I'd put it here: Drink your water!! It both is good for the fluid balance and it also prevents clots, I realize you are on coumadin but low fluid levels = blood more likely to clot...and we are trying to prevent the stent from having issues...
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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