did anyone have a MRV before going to Dr. Dake?

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

did anyone have a MRV before going to Dr. Dake?

Postby prof8 » Wed Aug 05, 2009 10:06 pm

I have a bunch of questions!

Just wondering if anyone had the testing done at their home and then sent the results to Dr. Dake at Stanford? And if so what did Dr. Dake have to say? I assume he ran the tests again when you arrived at Stanford? If the tests are run by him a second time did insurance cover both?

I have a skeptical family member who thinks I should be tested here first, just for another opinion, before I go to Stanford. The family member's logic is: if the test shows a problem here at home then it is a no brainer that I should go to Stanford. If the test at home is ambiguous it would just give us more information and maybe Dr. Dake would run the test himself and find something no one else found. I'm just ready to go to Stanford only but don't want to deal with a worried family member!

Any advice/knowledge you can give would be greatly appreciated.

Thanks all!
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Postby LR1234 » Thu Aug 06, 2009 2:24 am

Ok, I have a similar problem. I had an MRV and CT scan done here in the UK. The dr's here have reported it normal, Dr D however can see stenosis in the my jugular veins (I sent them to him and he kindly looked over them for me). I am now trying to hook up Dr D with my professor in the UK to discuss.
It seems that these stenosis can be open to interpretation.
I am keen to have the procedure done but I need at least one other dr to confirm Dr D's findings in order for me to feel comfortable in having the surgery.

I am putting myself forward to having the veins looked at internally it is invasive but I want to get to the bottom of this and either prove or disprove my stenosis! I am hoping my UK prof will agree to have a look for me.
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Postby Rokkit » Thu Aug 06, 2009 10:57 am

LR, when I talked to Dr Dake, I'm pretty sure he said he would be doing a venography before he starts the stent procedure so he can clearly verify the MRV results before proceeding. If I remember right from the Zamboni papers, the venography pictures leave no doubt about where the reflux is occurring. So maybe from that standpoint you can feel comfortable going forward without a concurring opinion from the less informed.

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Postby LR1234 » Thu Aug 06, 2009 11:13 am

I can't afford to go to Stanford to see Dr D anyway. I am speaking to Dr Simka about going to Poland to have treatment and I am sure he will also make sure stenosis are there before operating. Fingers crossed I can go to Poland soon.
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Postby ErikaSlovakia » Sat Aug 08, 2009 11:53 am

LR1234 wrote:I can't afford to go to Stanford to see Dr D anyway. I am speaking to Dr Simka about going to Poland to have treatment and I am sure he will also make sure stenosis are there before operating. Fingers crossed I can go to Poland soon.

Hi LR1234, I will also find out the price for the phlebography in Slovakia. It is also possible Dr. Simka will need it. I hope to know that next week.
E.g. normal MR of brain because of my MS cost about 209 Euro.
Do not forget to look at my posts. If you need any other help, do not hesitate to contact me!
I spent one night in a nice hotel near the hospital in Tychy and it was only 42 Euro.
I can also ask for the price of an angioplastic. There is a new good quality kardiocenter where they put stents into the heart. The procedure looks very simular to what we need. The center is only 33 km far from my town. My aunt and also my father had the procedure there. Good luck!
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