Rose Testing/Stents

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

Postby magoo » Tue Oct 27, 2009 2:54 pm

Rose,
You brought a tear to my eye because I am so happy for you!!!! I too feel a little cautious when announcing my improvements, but hey, it is what it is!!! I am thrilled at the outcomes of our surgeries. I hope you continue to feel better each day and get to take advantage of all of that new energy! What a difference a week makes!!!!!!
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 ozarkcanoer » Tue Oct 27, 2009 3:27 pm

All I can say is YIPPEE !!!!!!!!
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Alex

Postby Rose2 » Tue Oct 27, 2009 3:42 pm

Hi!
I just set up my follow-ups with Alex for Dec 11th.
Is anyone else there that day? A Friday.
That would be fun!
I was telling her what a popular person she must be and she said, Yes, she had just received a phone call from a patient in Africa! She didn't say what country, but this little world isn't going to be big enough to keep this from getting into all areas. Dont' you think?
Anyway, I thought that was interesting.
Rose
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Postby CRHInv » Tue Oct 27, 2009 5:15 pm

Oh Rose! I am so happy to hear how well you are doing! Keep the news coming. Guess what? December 11th is my birthday, that has got to be good luck. You will have to go celebrate for me.
Take care!
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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INR

Postby Rose2 » Tue Oct 27, 2009 10:33 pm

Hi.
Chaos with my INR. Internist out of town, his assoc. ordered PTT, and reduced my 5 mg /day to 4 mg. day. This MD also said There is no need for me to have another blood draw for 2 more weeks, instead of the weekly Dr. Forrester wanted.!
The Draw Lab said the Coumadin Lab wouldcall me directly but the MD's front desk called with dose change but did not know why.
This does not sound correct to me.
I had seen a longish thread here on Coumadin and others INRs, but cannot open it.
I will call the MD office tomorrow and see if I can get my values, but they have been very un-helpful, to say the least, since they learned about my CCSVI stents after the fact.
Do all INRs come with PTTs anyway and maybe that is what it reads?
I just don't know what test result info I need to ask the MD office person.
I surely do not want to lower my coumadin on misinformation, and was surprised thedose would not have been increased after the first week, let alone go 2 more weeks so soon after procedure.
Sorry so long. Anyone, please? Kinda scared. Rose
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Postby bestadmom » Wed Oct 28, 2009 6:57 am

Rose,

You should bring DR. Dake's office into the loop on this, especially since you are so close to them.
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Postby radeck » Wed Oct 28, 2009 7:46 am

Rose, let me know if I can help in any way. I don't know if you need a ride to Stanford or something. Most important thing is probably to not worry too much and try to just make the best decisions you can at a time.
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Re: INR

Postby Rokkit » Wed Oct 28, 2009 7:56 am

Rose2 wrote:Chaos with my INR. Internist out of town, his assoc. ordered PTT, and reduced my 5 mg /day to 4 mg. day. This MD also said There is no need for me to have another blood draw for 2 more weeks, instead of the weekly Dr. Forrester wanted.


Rose, I know it's disconcerting to get the answer like you did, but what they did really sounds ok to me. To adjust your dose to 4 mg sounds like the assoc. did look at the test and adjust accordingly. It's really not that hard to do so I feel like they did it right. My doctor's nurse is doing mine. She just does a pin prick and gives me the INR number right there. If the number is out of line she goes and asks the doc what the new dosage should be. Takes about two seconds. I don't blame you for worrying about the two weeks, but my advice would be to change the dosage like they said and when your internist gets back you can call and ask that the next test be moved up a few days. Mine's getting checked every 7 to 10 day as needed.
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Postby chrishasms » Wed Oct 28, 2009 9:29 am

123
Last edited by chrishasms on Sat Dec 05, 2009 1:25 pm, edited 1 time in total.
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Hey Rose & Rhonda

Postby brave » Wed Oct 28, 2009 3:31 pm

I'm so glad to see your postings about your improvement , I hope it will continue and sustain.

would you please post the contact info for Dr Dake and his clinic at Stanford?
I'm lost in loop of contacts with Stanford and finally ended up leaving a message for " Clinical Trials", which seems wasn't the right approach.

Thanks in advance,
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Postby bluesky63 » Wed Oct 28, 2009 9:36 pm

Rose, this is so wonderful to hear that you feel so much improved. I am sorry for all the trouble with pain and with pain meds. Are you sensitive to codeine meds?

I hope you get the INR stuff Figured out and that everything improves from here! :-)
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Postby Sharon » Thu Oct 29, 2009 7:07 am

Brave your wrote
would you please post the contact info for Dr Dake and his clinic at Stanford?
I'm lost in loop of contacts with Stanford and finally ended up leaving a message for " Clinical Trials", which seems wasn't the right approach.


Here it is:
Stanford Hospital
650-724-0831 - Main number for Dr. Dake's office
650-723-7676 - Alexandra Duran - Scheduling
650-725-3842 - Darcy Gibbs- Scheduling
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Great Day!

Postby Rose2 » Thu Oct 29, 2009 2:03 pm

Hi All!
Today I am down to one headache in my right eye. the one on the top of my head is not hurting today. Different head movements can bring them on but they go away pretty fast.
I got the INR report and it made sense when I read it, so I am happy to go down to 4 mg Coumadin for a few weeks until the next test. My diet is very regulated anyway, so I am not concerned about fluctuations in the INR due to my diet.
I am leaving in a bit to go for a drive with my friend. It is a beautiful day. The wind died down. Get some sun! Yeah!!
Radeck, thank you so much for your sweet offer to drive me. I am ok in that dept. Blessed with lots of friends.

I had a distanct aquaintance call me last night to tell me about this Jugular 'thing' he saw on TV in LA about 3 weeks ago and wanted to tell me about it! I told him I just had it done and he was so surprised. He cannot understand why everyone doesn't know it.
Does anyone in the LA area remember seeing it on a program? He said it was more than a small news blurb but didn't think it was the Discovery station either. Just curious who put in out there??

Yes, I do have trouble with Codiene and most anything that goes into my stomach that looks like a pain pill, so that is just me.
Just checking in. I am dressed and out the door!! Rose
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Re: Great Day!

Postby cheerleader » Thu Oct 29, 2009 2:20 pm

Rose2 wrote:I had a distanct aquaintance call me last night to tell me about this Jugular 'thing' he saw on TV in LA about 3 weeks ago and wanted to tell me about it! I told him I just had it done and he was so surprised. He cannot understand why everyone doesn't know it.
Does anyone in the LA area remember seeing it on a program? He said it was more than a small news blurb but didn't think it was the Discovery station either. Just curious who put in out there??


Hey Rose,
Hope you have a great day! So glad the headaches are calming down. We're in LA, and haven't seen/heard anything like your friend described. The only news so far is out of Jacobs, and they have a news video on youtube...maybe that was what he saw? One thing is for sure, there will be much more news in the next month :)
keep healing!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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My Day!

Postby Rose2 » Thu Oct 29, 2009 5:13 pm

Thanks, Cheer! I will have to ask my friend to try to remember where he saw it on TV. He works from home, is a mechanical engineer consultant so was very interested in what they did show on TV. He said the same thing we are all saying, Well Duhh.... and he just thought it was such a great mechanical engineering problem solver that he had to call me!
I had a great day with my friend. We went to Starbucks and I even went into the store and we sat in comfy chairs, then we went into the Relax the Back Store to sit in their great recliners while we gabbed it up. My friend is looking for a recliner, so we REALLY were shopping. :)
Lots of laughs and fun again!
Can't wait for tomorrow but gotta go watch the World Series!!
What a difference a week and 2 days makes!! Rose
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