Rose Testing/Stents

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

Resting and healing seems to be the way to go

Postby Ruthless67 » Wed Nov 04, 2009 11:15 am

This is so exciting Rose! I am enjoying your progress vicariously without the bruises! Just kidding with you, hope you get stronger every day!
I like everyone else can't wait to hear how your walk goes. I'm still amblitory but with balance and endurance problems. Just walking out to the mailbox is often a daunting experience, especially if it's icy!

CRHInv, Good luck on your 11/9/09 Stanford visit, I'll look forward to your updates as well.

Future stenter as well, I hope!
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Thank you!

Postby Rose2 » Wed Nov 04, 2009 11:30 am

Thank you. I will remember that about the Plavix.
My Nutritionist thought it was kind of overkill also, but not to second guess anyone on this matter for sure, I will be good and ask after the next INR.
I think it is only wise to take everything for at least a few weeks of bloodwork results anyway.

My mailbox is almost next to my front door and it is 'iffy' somedays and others are strong. I have been out there a few times with no problems.
So maybe today i will make the walk. I hope so.
Glad I don't get ice. whew. that is a hazard for anyone without MS.
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Postby magoo » Wed Nov 04, 2009 2:50 pm

Rose, I too am spotted! Thank goodness it's winter! LOL!
Glad to hear you are doing so well. I too have rested quite a bit this week. My brain wants to go, but I think I'll save my energy at the moment to heal. Keep healing and doing well:):):)
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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Othamologist today was a JERK!!

Postby Rose2 » Sat Nov 07, 2009 11:48 am

Hi All!
I went to the Opthamologist today. I really went in to see the optometrist in that practice for a new glasses presription as I have had more trouble seeing (blurry) for a while, but just haven't gotten in there.
She saw something and then the Opthamologist that checks my eyes for the MS reasons every few years that I go in, examined me.
I have a cataract in my right eye, so that is what is causing me so much blurry vision, etc.

BUT GET THIS........ In reveiwing my meds (Coumadin, Plavix, baby aspirin) I was excited to explain what I had done at Stanford only 2 weeks ago and how well I am doing, ETC.
WHOA!! Did he ever stop me dead in my tracks! He put me completely on the defensive and was not very nice about it.

His attitude and questions were stupid, "How many have they done? What do they expect to gain from it"? and the like.
Not one truly interested, good medical question.

I was in such shock I couldn't even respond appropriately with what information I have. But it would have been a waste of my effort anyway.
I am so shocked that someone like him, with a few prominent practice locations in the Bay Area and a good surgical reputation, would be so closed minded and aggressively negative to even the idea of something new.
Needless to say, he will not be my Opthamologist again and will not be doing my cataract surgery.

Anyway, I wake up every morning now with NO headaches!
I am sleeping ALL night with great, normal dreams.
I am back to doing my laptop computer data input on the Virtual Network to my husbands business like I was before. And I am doing almost the same amount as before except my eyes are blurry, hence the trip to the optometrist/opthamologist. ha ha.

When I got out of the car yesterday, I caught the door to slam it shut and that hurt my shoulder that was healing, and I feel like I put myself back about a week doing that! Such a seemingly small motion.
I really feel great and it hasn't even been 3 weeks.

I didn't go to the optometrist before surgery for a few years because I never felt 'good enough' and kept cancelling the appts.
Now, only 2 weeks post op I was down there for the exam. I think that is a big deal! Or at least a good indicator!
thanks for reading all this! Rose
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Postby radeck » Sat Nov 07, 2009 11:56 am

Thanks Rose for the update. Sorry to hear about your opthamologist. I'm always astonished how some people don't realize that it is not constructive to simply bash things without offering actual arguments. That's the way I counter, just ask them for the arguments.
Last edited by radeck on Sat Dec 19, 2009 1:26 pm, edited 2 times in total.
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Postby ozarkcanoer » Sat Nov 07, 2009 12:00 pm

Rose... I'm going to Detroit for Fr. Haacke's imaging study. It will be on Dec 7. Next Thursday I see my MS neuro and I am quite apprehensive about what he will say about this. But you had the courage to talk about CCSVI to your opthamologist, so I am going to talk to my neuro bluntly whatever the reply I get and I'll try not to feel hurt if he rejects CCSVI outright.
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YES! Ozarkcanoer

Postby Rose2 » Sat Nov 07, 2009 12:29 pm

Ozarkcanoer,
Yes, go fot it. It was just the shock of his close-minded response that acturally felt like a slap in the face!
Really, it stung! And all I could think of was how totally uninterested so many health 'professionals' must be.
It was insulting to me. So don't take in personally. It was just my first time and I am sure not my last.

My local neuro must have received Dr. Dake's report of my Stanford procedure because my neuro's office person called me a few days ago to put me on a Coumadin/INR test routine.
Yeah, like 2 weeks later. ???? I explained I was already being taken care of by my Internist. But they didn't ask how I was , or anything.
Oh well..... I won't take that personally either. But I cannot understand their LACK of interest.
I mean, even if they were just doing this in rats, I would be interested in the theory and results, wouldn't you???
Grrrrrrr.......
Thanks. Rose
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Postby CRHInv » Sat Nov 07, 2009 12:52 pm

Hey Rose, Sorry about your arm. Sounds like things that I do! I am really glad how well you are feeling though. That is really awesome!

Hey, read my signature line. I swear, it is the truth!
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 » Sun Nov 08, 2009 7:13 am

Rose, so glad to hear about the improvements. I'm sorry about that closed minded doc. My neuro has been sarcastic and dismissive about this too. I am headed to his office tomorrow to see my physical therapist and I'm a bit nervous. I know she will be great about it, but I wonder if he'll come by to see me? Probably not....
I hope you find another doc and get your eyes taken care of soon. Keep healing!!!!!
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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Sunday

Postby Rose2 » Sun Nov 08, 2009 10:54 am

Hi!
Less than 3 weeks later:
Yesterday, up early, worked on the computer, drove to visit friends and see their visting grandkids, played with them, went grocery shoppin (This is huge for me), and went out of town to a really nice dinner on the Bay and stayed there until 11:00pm. I was the only one oblivious to the time and I was into the conversation and the fun the whole time!
Never once did I get the tired, end of energy 'Have to leave now' MS thing.
Now, Sunday morning I am up and we are off to the beach, about an hour away to check out the 20 foot swells that are supposed to be coming on shore today.
This is NOT a weird, fluke. This is a friggin' miracle. Ask anyone who knows me!!
I got a big hug from a very large friend yesterday and heard a 'crack' in my neck and got a headache for a few hours, so I need to watch out for that. But if that is the worst of my problems ....I say WOW!!!!!
Just FYI. Rose
I get my second INR on Tuesday. That will be interesting.
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Postby radeck » Sun Nov 08, 2009 10:59 am

Oh Rose, excellent news! I hope you continue finding the right balance...

Haven't heard about those 20 foot waves. Maybe we'll go check them out too!
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Postby magoo » Sun Nov 08, 2009 10:59 am

HURRAY!!!! That is remarkable! I too have had the same kind of success. Isn't it wonderful??!! The energy is amazing. It's been so long since I've really felt like myself. I never want this to end! Watch the neck, ouch!
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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WAves

Postby Rose2 » Sun Nov 08, 2009 11:11 am

Radeck,
We are going to Half Moon Bay to see them. Good excuse for a nice crab sandwich at Ketch Joanne's down at the boat harbor. Great food, good hole in the wall local type thing. Not in the town area, north at the boats.
See you there?? Rose
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Postby radeck » Sun Nov 08, 2009 11:41 am

Sounds like the best spot! Unfortunately we have to be in Sonoma at noon, so will go see them in Point Reyes or so if we make it (Half Moon Bay would be too far south)...have fun and hopefully another time.
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Postby CRHInv » Sat Nov 14, 2009 4:09 pm

Rose! Its Saturday again! Are you going out on the town tonight? How are you feeling??
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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