Rose Testing/Stents

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

Rose Testing/Stents

Postby Rose2 » Sun Oct 18, 2009 11:16 am

Hi All.
I go to Stanford tomorrow Oct 19/ Stenting Oct 20th if indicated.
I did write somewhere I would start a thread to enter my experiences if you want to read.
I just spent an hour writing this then pushed something and it disappeared, so I think this will be shorter. Lucky for you!

Dx 2001 RRMS still. Diagnosed and hospitalized for over a week in 2001 at Stanford so I do have a patient history there tho I know I did not get in any faster than alot of you that are traveling a long way.

My husband is pretty ill this week with a crappy chest cold, so I am keeping my distance and trying not to get sick. I am sure Radiology would not be able to do the scans with a cough like his.

My 27 yo son is driving me and I have another reason for that, also.
My son has been a surfer and diver since before he could walk. I like to say that he has surfed every continent except Antarctica, BUT he states surfing Ireland counts for that! hard to move in a 200 ml wetsuit! ha

Anyway, so we were all shocked when he had to drop out of the Santa Barbara Dive School (welding and such) when he was younger, when out of no where, he came down with some still undiagnosed ear issue that prohibits him from diving more than 15-20 feet!!
NO ONE, and I mean NO ONE from the most famous LA ENT on down has been able to ever determine a cause, cure or treatment.
But, the recent posts from those of you with ear and sinus issues and your posts have given my son the slightest hope that there may be a darn good reason for all of his 'weird' ear symptoms.
He even has days of CogFog now, tho he doesn't understand what I see in him when he has those days.

I hope you can read and understand what I am trying to say.
I have 2 maternal female cousins with MS, one RRMS and one PPMS.
I quit the Avonex 2 years ago after taking it for 5 years. I was just sick of being sick from it. I AM NOT ADVISING ANYONE TO DO THIS. I am just giving you some of my history. MY choice only. Everyone else did the freak-out dance and I have never felt better. I have had 2 episodes this calendar year so far tho, 1. Back and 2. Feet and leg. Just finished my 3 days of out pt IV Solumedrol about a month ago so I am still on the feel great, crazy lady 'high'.

There is no easy answer, as there is no answer, to this point, IMOHO,
so I am hopeful and prayerful for some insight tomorrow.
Sorry so long.
Thank You, Rose
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Postby Lyon » Sun Oct 18, 2009 11:38 am

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Last edited by Lyon on Thu Nov 24, 2011 11:18 am, edited 1 time in total.
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Thanks for the Link

Postby Rose2 » Sun Oct 18, 2009 11:46 am

Thanks for the info and the link, Lyon. Will check it out. Rose
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Postby CRHInv » Sun Oct 18, 2009 12:12 pm

Rose, thanks for the information. I think we all love long posts around here! I will be thinking of you on your travels tomorrow.

I think as this thing continues to get sorted out, more and more of our family history will make sense. Periodically, I read something here that is a symptom, that I have!, and I never even knew it might be related. I just thought it was some quirky thing with me.

Take good care and check on Rhonda!
Beth :D
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 mrhodes40 » Sun Oct 18, 2009 1:21 pm

It will be interesting to hear how things go!
does your Stanford neuro know? good luck!
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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Hey

Postby Rose2 » Sun Oct 18, 2009 2:29 pm

Thanks, and I will be looking for Rhonda.
My neuro's practice is off site of Stanford, but he teaches there.
I left a message with his office that I was having this done and these dates but he has not called.
I had been in contact with him thru this last Flare, so I will give him the benefit of the doubt that he knows I will keep him informed.
But really, no questions from him.
I am hoping this is something that the neuros at Stanford especially are following, but who knows? Guess I will find out soon enough.
Honestly, I think we 'stenters' have nothing to lose, but Neuros may need to sit back and wait to see what liability they could incur?
I am sure they are just as curious but maybe not in a position yet to advise it?
Or they may be afraid if Dr. Dake gets ALL of their referrals they might get an unwanted stent! Just a thought.
I think they all need more info and we are the info. Rose
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Postby SammyJo » Sun Oct 18, 2009 3:15 pm

Rose,
If you feel up to it, consider reporting your experience on the sticky Tracking thread. It is good to start before you go, just note what your scores are on the 3 disability charts listed in the thread. Then you can score again after the procedure, and post a progress log. I'm right behind, going to Stanford 10/26, and looking forward to posting my Tracking log too. Before the trip I am
EDSS=6.0 FSS=6 MSIS=74.

If we can show in 6-12 months that as a group we moved from an average of say MSIS=68, to MSIS=48, and the other scores go down too, that will help others decide if they should do this too.

Good luck with your procedure!
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Postby sewwhat » Sun Oct 18, 2009 3:37 pm

Rose ~ Your post made me laugh because I just wrote a very long reply to a post and I hit something and it was gone?? I decided to forget it & respond later lol Arms too numb

Best of wishes to you :) I will be watching for updates on your experience.
You'll be in my thoughts & prayers tc
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Postby CureIous » Sun Oct 18, 2009 4:21 pm

Hi Rose, we ALL can't wait for tomorrow! Only thing worse than dumping a post on here, is dumping a voluminous PM for one person! lol. Been there done that so many times and NEVER learn! Sigh. This is good though all this back and forth about the sinus stuff, I never had sinus problems til I "got" MS. Never! Didn't even know it was sinus, just right eye socket pain and tenderness yadda yadda. Hit at precise times of year, and coincided sometimes with a flare up, go figure. Oh the misery.

We'll be with ya tomorrow and waiting anxiously but confident you are in the right place at the right time....

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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Thanks again

Postby Rose2 » Sun Oct 18, 2009 5:28 pm

Thanks again for everyone's support.
Magoo, I am trying to get to Dr. Dake's office early so I will be the one yelling MAGOO!! Listen for me.
Good luck to you.
Rose
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Postby magoo » Sun Oct 18, 2009 5:47 pm

Rose, I am excited for you. We all hope this finds the answers we are searching for. Please yell down the corridors to find me! LOL! I have my consult in the Falk Bldg. at 8:30, after that I "should" be in the main hospital prepping for surgery. I can't tell you how many ways I have seen the conversation going tomorrow. I'll be much less stressed when I hear the resuts out of Dr. Dake's mouth. I hope you have Russ for your imaging, he's GREAT!
Lots of luck tomorrow:):):)
Rhonda
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 Jamie » Sun Oct 18, 2009 6:00 pm

Good luck tomorrow to both of you!
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Red Chair

Postby Rose2 » Sun Oct 18, 2009 6:13 pm

When you are at Stanford, and you see a plastic Red Chair with wheels and handles that looks like it could be a wheel chair, It Is!
Grab it and use it! There is a large stack thru the cafeteria by the ER entrance but you can see them alot of places and you can be pushed out to the parking lot and leave it out there by the pay station person.
They are there for anyone to use, you don't have to sign for them or anything.
They have saved me more than a few times.
Just FYI. save your energy.
Rose
oh, and try to go to the ATM before you get to the hospital if you need one, because it also is way back by the ER entrance (how I found the Red Chairs!) and it can be quite a hike.
The parking lot pay station does not take a debit card or credit card. No swiping! seems weird in this day and age, that is why I had to find an ATM.
I think this story is going backwards. Cash? what is that?
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Postby magoo » Sun Oct 18, 2009 6:39 pm

Thanks Rose:)
There is a person mamed Joe from MS World heading in tomorrow too!
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 whyRwehere » Mon Oct 19, 2009 1:57 am

Rose said: He even has days of CogFog now, tho he doesn't understand what I see in him when he has those days.
That's my husband...I say he can't drive, because he can't think fast enough, he says he can't drive, because of his heavy leg/foot.
I'm glad you are considering having him tested, just to see, before anything gets worse.

If you hit something by accident, try hitting ctrl and z at the same time, sometimes that will save you.

Lastly, Good Luck! keep us posted!!!!
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