IslandGirl Goes to Stanford

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

IslandGirl Goes to Stanford

Postby mrhodes40 » Fri Jul 03, 2009 12:51 pm

My good friend Island girl is not the most prolific poster she is new to forum life and still getting her "internet fingers". She called me the other day to check if her post was sounding OK...then did not post it!! We are all just friends on here and no one judges grammer if they did I'd be curtains my typing is horrific! Right guys?

But she reads these every day and is going to see Dr D on monday for an appointment Tuesday and surgery Wednesday if needed.

IG has severe neck pain and herniated discs too, so the recent thread on myelopathy was really interesting to her. She is very interested that her neck pain is probably vein related and actually this howl thing rang a bell with her on our first conversation...it just seemed to match her experience maybe she'll write more on that. I hope so ....

Island girl we all are pulling for you!! I told her I was starting this thread for her....
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 javaneen » Fri Jul 03, 2009 12:54 pm

Good luck in Stamford Island Girl! I will keep you (and everyone else) in my thoughts and prayers. Stay strong and positive!
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Postby IHateMS » Fri Jul 03, 2009 12:55 pm

Best of luck IG.
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Postby cheerleader » Fri Jul 03, 2009 1:42 pm

Hi IG!
Jeff, our son, and I will be at Stanford on Monday....we'll probably be taking a break in the cafeteria on the 1st floor between 1-2pm. I'm give Marie my cell phone number for you, so that you can check in with us. We're trying to meet up with Jamie and Mel, as well. Safe travels, and hopefully we'll see you on Monday! What an adventure, huh?!?
best,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Fri Jul 03, 2009 2:07 pm

IG, it sounds like you will have quite a crew there at Stanford cheering you on. Best of luck with everything, and please do send updates, in some way, when you can
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Postby ladystewart » Fri Jul 03, 2009 2:31 pm

Good luck IG!!
My typing is off or I would type much/much more.
:wink:
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Postby Needled » Fri Jul 03, 2009 3:48 pm

Looks like Stanford is the place to be next week. I'll be here in your virtual waiting room, thinking of you and waiting so very (im)patiently :lol: to hear how you are doing and what was found. Good luck Island Girl!
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Postby mrhodes40 » Fri Jul 03, 2009 4:14 pm

I know it is a heck of a week isn't it? What will we have heard by next week...shivers up my spine...
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 peekaboo » Fri Jul 03, 2009 4:35 pm

hey IG -

Oh my goodness what more can I say..hope all is well and more power to the tim people....
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Postby skydog » Sat Jul 04, 2009 10:50 am

To the next runners up, and IG. Really be careful about what you eat a couple of days before your procedure. I would strongly recommend a liquid diet or at the very least stay with fruit and vegetables two days prior. Get well hydrated. The reason for this is it is very easy to become constipated as I did. Also when you do get the chance to eat a full meal start with small amounts of easy to digest food, and watch how you combine them. My recovery night was miserable to say the least because I ate everything in sight and suffered a severe bout of trapped gas and constipation. During the surgery it really helps to have a place to go in your mind that is calming. I had to put myself launching and soaring into the sky over the coastal cliffs near home. No amount of Demerol could match the peaceful feeling of being disconnected from the pain I was enduring near the end of 5 hrs of surgery. Practice breathing you will be doing this a lot. I sincerely hope that I was worse case scenario and anything learned from me will help the next inline. Take care everyone, Mark
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Postby Islandgirl » Sat Jul 04, 2009 11:37 pm

Well, Here I am just beginning my own post 8 people down! I am overwhelmed with the love and concern you all show each other and me. Thank you so much. All the information has been very helpful in gearing me up mentally and emotionally for this decision and the guts to do it. You're all so smart and informed, and speak so well. I understand most of it because I was in nursing at one time, but it will take time to speak intelligently on this subject. I have not been able to spend the time that I need to study, but I will. I will post all of my experiences and every little change I have in the future, (that is if I have Stenosis.) Actually I have written 3 posts, I lost one before I could post it, darn, and didn't like the others and never found the time to redo them. Mrhodes took the bull by the horns for me! And started this post. Marie, I am so lucky to have you as my friend.

Cheerleader, I would love to meet you in Stanford and thank you in person for all your work, but I am flying in at 9pm on Monday so I will just miss you and the others. Are Jamie and Mel going to be at Stanford on Tues?

Skydog, I can't thank you enough for your advice. I will do every thing you ad viz. I hope that your healing is fast and amazing. I have been in the eye of a family hurricane and then my son's fiance thought I was doing the food for their wedding reception the 24th of July! Oh boy! Your advice has helped me to begin to focus of this surgery.

Here is a list of my symptoms right now as I head to Stanford:

I always have neck pain at night when I lie down. Most of the time I have to sleep sitting up or have my head elevated. I can't sleep more than 4 hrs at a time. I have regular spasms day and night, four to six spasms of serious pain during a twenty-four hr period. These spasms are sometimes debilitating like migraine headaches, my teeth even hurt which last from 25mins to 1-1/2 hrs at night. I hear some people have no pain with MS, not in my case. Although I believe I am in remission. My last Neuro thinks the pain is not from the herniation, but does not have a clue as to what it is.

He found 6 new lesions and wanted to change my medication from copaxone to Rebif. That almost killed me, my heart went nuts so I quit one wk into the 44mg dose. Since the Rebif my brain fog has increased. I also have a notable throbbing ache behind my ears and an increased headache overall as well as neck pain. I feel as though I am getting worse.

I also tried Tramadol for one month to see if it would ease my pain. I was wild with pain at the end of the perscription. I think that the Tramadol slowed my circulation and made my condition worse. I quit the drug and I got better, or went back to my previous condition. I really do think this is all circulation related.

This note is way too long, so I'll write more tomorrow if I have any questions. And thank you again for every note of encouragement. It really means a lot to me Islangirl
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Postby mrhodes40 » Sun Jul 05, 2009 10:21 am

Yeah IG good to hear from you ! I hate when a post disappears! I keep telling myself to copy by right clicking it so I have a copy on the temporary memory and if it loses itself I can "paste" into a new box and it will be there, but I forget.

It'll be good to hear how your pain level is impacted by this proceudre if you should decide to get it after MRV. I have my fingers crossed on that, Please God! pain is truly terrible. I have a fair amount because of the RA it can impact life more than anything.

IG walks without a cane, and can walk pretty far--like three miles, right IG? can you still go that far? And are your hands normal still?

We'll all be holding your hand metaphorically speaking.... wishing you well! marie
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 Islandgirl » Sun Jul 05, 2009 6:54 pm

Hi Marie, yes I can still walk but the heat makes it a lot more difficult. I have been preparing mentally to get into that awful tube. I hate that MRI tube. You would think I was use to it by now. Tomorrow I leave at 7:50pm. I will have a laptop so I'll fill you in as things happen. Bon Voyage! Islandgirl
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Postby mrhodes40 » Tue Jul 07, 2009 5:26 pm

It's 5:20 and I just talked to Island Girl and she has had her dopplers and her MRV but has not seen dake yet he just got out of surgery with today's MS patient...that's Mel!!... and she expects to see him soon for her talk.

she'll let us know more later. One of my best friends of my whole life. I wish her well and wait for her call with bated breath
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 Jamie » Tue Jul 07, 2009 5:34 pm

Good luck IG !!

Dake is awesome!
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