Notes from CureIous' at Stanford

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

Postby CureIous » Mon Feb 01, 2010 9:08 pm

CRHInv wrote:Mark, Sharon - Are you guys on any DMD's or going to start them back up? I am going to have to make this decision and I am just wondering what you guys think.
Thanks!
Beth


I stopped my Avonex prior to the procedure, but before ever hearing about CCSVI due to financial constraints. When my flareup last year hit, Neuro was obligated to tell me to get back on them, I adopted wait and see attitude, since the stopping Avonex part was shortly before hearing about CCSVI by about 3 months. I know by the time you get that out-of-the-blue flareup, it's too late to jump back on the drugs for that particular damage, so I accept the responsibility for any resultant issues from not going back on the meds, but so far so good, this certainly isn't even close to progressing, compared with the last 7 years or so, so once again, guarded optimism is the flavor of the day.

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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Postby prof8 » Mon Feb 01, 2010 9:09 pm

Hey Mark -- What a great post! I'm so glad you are busy these days--and the recovery of short term memory must be a life changer. Congrats on the new baby coming. It sounds like life is good. Prof8
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Postby CureIous » Mon Feb 01, 2010 9:11 pm

Thanks Prof8! I moved my update to this page since my next post buried it in the previous page... Talk about bait and switch!!

Resurrected from mothballs for my "official" 6 month update!

What a whirlwind this has been, I never EVER imagined having the capability to take on everything that is currently on my plate without nosediving into a ball of "nothing in nothing out" on the couch. AKA catatonic, brain out to lunch, come back later.

This week I organized a local shoe drive for Haiti to augment what they are doing at my Aunt's work, way easier asking for people's old shoes than money! My Aunt works for the company Molly Hightower's father is a manager for in Tacoma, and as a result of her death in that 7 story orphanage which collapsed, he is picking up the baton and running with it.

We now have the wife officially home on maternity leave, my solo parenting experience a rave success for all parties involved, we got my other girl in a CA Distinguished school near here instead of Mom's work, oh boy what a joy that was to bring her in for her first day today. You aint lived til you seen one of these from the inside. Forget private, find one of these. I guess we liked it, so does Hailey, no more lollygagging around she's not numero uno any more haha.

I continue to deal with all that, getting the house ready for baby, due March 4th in case anyone wonders, plus all the CCSVI stuff and people to deal with, which is always a privilege, and very close to a date for 1 year follow up at Stanford in a couple months, am going early for venous hum issue but no rush. Very exciting to see how far things have come, but double-down on the grindstone cause much work needs to be done.

Somehow have kept up on all my genealogy work and archiving our family history and the 100's of old pics that have worked their way into my collection, even got our Miller's back into Germany, huzzah!

See? Perfectly NORMAL sounding update, nothing tragic, nothing stellar or out of this world, plain Jane as it gets and oh boy doesn't THAT sound like a winner?? Yeah, I get a little MS'y sometimes but then again am blowing through the days and angry when it says 12-1 am on the clock, then back up at 6 or 7 and do it again because there truly are NOT enough hours in the day.

I'm not even a tiny teensy bit less excited now, than immediately after the surgery, if anything MORE because every passing day tells me this thing is stuck in high gear, pedal to the floor. Today we received a boatload of instructions from Hailey's stellar new teacher on how the homework is structured, what to do, all that. Old me: verbal comm's are in THIS ear and out THAT one. I stopped trying because it would never stick.

Today, wife was unclear on what teach had said, I told her verbatim everything to a tee. Wherever that instant recall short term memory thing came from, it can definitely hang around for awhile!!!

Okay back to work here, and thanks for letting me put you to sleep yet again..... Will post pics when the baby comes....

Mark and Suzy and Hailey and Savannah...
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 » Mon Feb 01, 2010 9:39 pm

Mark,

Wow March 4th is getting so close! Congrats!!

Sounds like you are doing great. I am glad I am not the only one who still gets MS'y sometimes. Tell me more about your MS hum when you get time.

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 prof8 » Mon Feb 01, 2010 10:07 pm

Mark, I sent you a PM.
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Postby CureIous » Mon Mar 15, 2010 4:11 pm

I realize there's little need to post monthly updates at this point, as "more of the same" gets needlessly redundant, but as hinted in my other recent post, yes, I am the proud father of a bouncing baby boy, Noah. Image

Noah was much on my mind as we made the trek to Stanford last August, having just found out that our 3rd and final child would be coming soon (in the adult world, 8 months is a blink is it not?). I wondered, and frankly worried how my desperately tired person would be able to handle one more baby in the house along with 2 small children, with so little support in the immediate area, and a Daddy that found it so difficult to do more than piddle around the house for an hour or two before "resting it off".

Nevertheless, shortly into it, we decided to make this one a surprise, no ultrasound other than medically necessary, this baby would be a surprise for everyone, son or daughter.

Having recently returned from Stanford into a new lease on life, choosing the name that by itself, implies new beginnings, and can mean "comfort, rest, quiet", we agreed that Noah was proper and fitting, and something we both liked. Yes, we also picked out a girl name too, but I kinda "knew" Noah was coming lol.

Yes, he's keeping us busy, well mostly Mom, but Dad is charged with most of the feeding and care of the girls, trips to and from school, entertaining the 3 year old while Mom naps, all that fun parenting stuff.

It's been a joy to have this child, all those fears of "how am I going to be there mentally and physically when taking out the garbage alone can sometimes take everything out of me", not to mention the heat in this area, failed to materialize, and for that I am truly grateful!

Every day now seems like a whirlwind of activity, just normal life is all, but one thing is for sure, I'm "there" to enjoy every last loving moment of it!

One final tidbit to toss in, my one-year follow up is scheduled early for next month, April 15th.

Mark and family.
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 cheerleader » Mon Mar 15, 2010 4:15 pm

congrats, Mark. Noah is beautiful...
enjoy it all,
xo cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Mon Mar 15, 2010 4:27 pm

A beautiful picture of father and son. I am very happy for you and your family, Mark.

ozarkcanoer
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Postby shye » Mon Mar 15, 2010 4:35 pm

thanks for sharing such joy with us Mark--and all the best on the 15th!
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Postby Katie41 » Mon Mar 15, 2010 5:33 pm

What a lovely picture! I'm so glad you are doing so well. Are you LA Man? If so, you are the one responsible for my knowing about CCSVI. I can't thank you enough. If you aren't, thanks for sharing your great news!
Katie41
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Postby MS_Jess » Mon Mar 15, 2010 5:33 pm

What a beautiful story! Brought tears to my eyes. Congratulations!!
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Postby MS_Jess » Mon Mar 15, 2010 5:34 pm

What a beautiful story! Brought tears to my eyes. Congratulations!!
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Postby magoo » Mon Mar 15, 2010 5:39 pm

So wonderful!!!! That is a very handsome little boy!
I can't wait to heaar about your follow up scans.
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 Johnson » Mon Mar 15, 2010 7:05 pm

Hey, congratulations Mark! I love babies, and that is a sweet-looking little guy you have there. I have to say though, I only ever had a mental picture of you, and when I saw that pic above, I wondered who the heck it was. Good to have a face to go with the name.

We were old-school with our little guy too - viz. the ultrasounds. Only had one to check for defects, early on, and I warned the tech. that if they could determine the sex, I did not want to know. I was hoping for a girl, but was not disappointed with my son in the least (first and only child). It was kind of fun to have the recognition, and say "It's a boy!"

Best possible wishes to you and your now-larger family.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Mon Mar 15, 2010 9:36 pm

Katie41 wrote:What a lovely picture! I'm so glad you are doing so well. Are you LA Man? If so, you are the one responsible for my knowing about CCSVI. I can't thank you enough. If you aren't, thanks for sharing your great news!
Katie41


Yes, I is. Shh, don't tell nobody haha.
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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