Palo Alto 1/20 to 1/22!!

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

Postby dlb » Mon Jan 25, 2010 7:42 pm

Hi Beth,

2 thumbs up!!!! I'm so very happy for you. Thanks for the update and yes... I think that neurologist is going to be grilling you and scrutinizing your test results before versus after, absolutely! Enjoy the "new you"!

Deb
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Postby Cece » Mon Jan 25, 2010 8:05 pm

SammyJo wrote:3. What is a reasonable outlook, how long will stents last, patency etc.
4. How would I know if the stents start to break down?


Did he have any answers to these questions?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Sharon » Tue Jan 26, 2010 4:04 pm

Hi Beth!

Thanks you for a report on your trip to Stanford.
Dr. Dake had said he would like another update in a year, but maybe we could get it taken care of close to home and send him the information. My daughter let him know we would be back. She loves that place!

Dr. Dake told my daughter and I the same -- he wanted a one year check-up and he would help us find someone in the Denver area. My daughter told him we would be coming back to Stanford - my son-in-law told Dake it sounded like a girl's long weekend in Palo Alto. :D So, yes we are also going back to Stanford -- for fun and for our check-up.

Nice to hear you had another "ah-ha" moment. Isn't it fun to all of a sudden realize you have a new normal?

Sharon
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Postby CRHInv » Thu Jan 28, 2010 7:58 pm

Hey you guys!
I went and saw my neurologist yesterday. He was interested in how I was, but he didn't go overboard or anything. My neurological exam went well and I think I passed on all accounts. He said I had a lesser reflex in my right foot, but he seemed to blame it on my previously broken pelvis.

I told him I felt so great I did not want to re-start my copaxone. After he looked at my MRI from January he told me he didn't want me to take that medicine either. Guess why... I only have one lesion left in my brain! I have to say, that I have never been super clear on how many there were, but he went through the newest MRI comparing it to his 4/09 MRI and kept pointing out where they had disappeared from. It seems like he pointed to at least four, (I am being conservative here.) He said I was a pioneer, (I wonder if he knows that is Dr. Dake's word), and I shouldn't muddy the waters.

Treading carefully since he is a drug researcher, I asked if there was someone at Barrow's, like a nice neuro-radiologist, as has been suggested here, I could take this information to. He said I should bring it to him. His concerns were that 1.) he liked the doppler idea and wants to see the Buffalo results and 2.) how to get insurance companies to pay for this. He was surprised when I told him that the protocols were available and he asked for them. I reminded him that even a tech that wants to find the problem can't always find it without the proper training. I let him know that Dr. Dake and Alex know how to present this to the insurance companies. When I was leaving he asked me again to send him the doppler protocols. (Yes, I sent them that evening.)

Okay, so what I would like to know now is, how does my pre-procedure MRI compare to my post procedure MRI, with just the changes over the two month period. I will contact Alex and see how to get the reports on those and see what the doctors say. If you guys know how to get those without bothering Alex, let me know. I will let you know what I find out.

Sharon - I wish my one year would mesh with you guys! I would love to be there with you both.

Cece - I am sorry I didn't answer sooner. I did not ask the question about how would we know. I think Dr. Dake thinks these stents will last for life.

Rose - Did you ever get that room done?

Lisa - Hang in there buddy. I didn't get any new information about the study. I really wish there was something.

That's all for now. Take care everybody!
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 Arcee » Thu Jan 28, 2010 8:36 pm

Beth, instructions from Mark about getting images without bothering Alex:
Radiology Images

If you are requesting radiology images, telemetry tapes or photos, you must contact the department that collected the data.
To obtain a copy of these records, please print and complete a separate Authorization for Disclosure of Health Information form
You can contact:
o The Radiology Film/CD Library by calling (650) 723-6717
o EKG Film Library by calling (650) 723-7407
o The Pathology Slides Library by calling (650) 723-7211

Or use http://stanfordhospital.org/forPatients ... cords.html, there is a .pdf there with a form.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Sharon » Thu Jan 28, 2010 10:20 pm

Beth -

Follow Arcee's instructions - print out the medical records form. The CD's will have your pre and your post procedure images on them.

It is nice to hear the neurologist is interested AND, great news about losing a few lesions :!: :!:

Sharon
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Postby CRHInv » Fri Jan 29, 2010 7:22 am

Hey, I might not have been clear. I have the cd's, I don't have the written reports after the doctors 'read' the images. I will call the film lab and see where I might find those. Thanks!
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 Sharon » Fri Jan 29, 2010 10:40 am

Beth - you still use the medical records form - http://stanfordhospital.org/PDF/medical ... mation.pdf

Call the phone number which is listed on the form.

Actually, I called Angela and had her send my forms by email but that was before they got so busy.

Sharon
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