Going For CT

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

Going For CT

Postby AJWANTSACURE » Mon Feb 08, 2010 8:14 am

going for my ct-scan today of jugular and azygos veins. According to Dr. Dake from what others have said, this is the BEST alternative if you can not find a radiologist to properly perform and read the dopplar scans
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Postby HappyPoet » Mon Feb 08, 2010 8:49 am

Best of luck with your scanning.

If you haven't already seen these amazing images from a CT scan, here is the link: http://www.thisisms.com/ftopict-8515-.html

Also see this link: http://www.thisisms.com/ftopict-9753-.html

Keep us posted!

~HP
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Postby AJWANTSACURE » Tue Feb 09, 2010 6:47 am

got my ct scan. with and w/o contrast, i looked at the photos for hours. i dont't know what im looking at but when compared to some other phots i have seen there are a couple of photos of the head where the jugulaar appears wide then very narrow.

not sure....maybe im that 1% thaat doesnt have it. hope is dwindling :(
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Postby costumenastional » Tue Feb 09, 2010 7:08 am

I think it too early to get dissapointed. When will you receive a dx from a radiologist or something?
Best of luck.
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Postby AJWANTSACURE » Tue Feb 09, 2010 7:15 am

soon i hope cost
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Postby costumenastional » Tue Feb 09, 2010 7:17 am

One more time, best of luck.

Something tells me we all have vascular problems, somewhere, somehow...

It just makes sense.
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Postby AJWANTSACURE » Tue Feb 09, 2010 7:29 am

everything about CCSVI makes sense. like you and i have said b4 along with so many others - its going to take time to figure it out
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Postby AJWANTSACURE » Wed Feb 10, 2010 9:24 am

got the radiologist report - NORMAL!

thats my last bit of hope GONEEEEEEEEEEE!
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Postby ErikaSlovakia » Wed Feb 10, 2010 9:47 am

AJWANTSACURE wrote:got the radiologist report - NORMAL!

thats my last bit of hope GONEEEEEEEEEEE!

If it is necessary I will repeat this every day:
1. I had ma Doppler done by Dr. Simka Aug. 7, 09 - left jugular valve problem, zero blood flow
2. I had 3 or 4 Dopplers in Slovakia and they knew what they were looking for - my jugulars were just perfect
3. I had CT with contrast in Slovakia - my jugulars were perfect
4. I had second CT in another hospital with contrast - my jugulars were perfect
5. I had MRV with contrast in Slovakia - my jugulars were perfect
6. I got a stent because another 2 MRVs in Poland showed problems + Dr. Ludyga found the same problem with Doppler + it was visible during phlebography as well!!!

Sorry, but your negative results does not mean much, well almost nothing. You still can have CCSVI.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby AJWANTSACURE » Wed Feb 10, 2010 9:51 am

thanks erika - maybe i need to go to poland
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Postby ErikaSlovakia » Wed Feb 10, 2010 9:57 am

AJWANTSACURE wrote:thanks erika - maybe i need to go to poland

I hope there are some doctors in the US who are going to have proper training for Doppler.
I know even some Slovak doctors go for the official doppler training in March to Italy.
I know Dr. Simka and Dr. Zamboni are/were in Northern America also for giving Doppler training to some doctors.
I strongly believe there are going to be more and more doctors who would be able to do proper Doppler.
On the other hand I completely understand you need it right now. :(
Good luck!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby AJWANTSACURE » Wed Feb 10, 2010 10:07 am

Erika, can i ask how your doing since the procedure. Haave you heard of Dr. Dake at Stanford University in California USA?
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Postby Nunzio » Wed Feb 10, 2010 11:26 am

I hope you meant MRI/MRA since CT scans are not good at identifying soft tissue problem as MRI
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Postby ErikaSlovakia » Wed Feb 10, 2010 11:36 am

AJWANTSACURE wrote:Erika, can i ask how your doing since the procedure. Haave you heard of Dr. Dake at Stanford University in California USA?

Of course I have heard of Dr. Dake. I started in this forum last year in July. It was full of Dr. Dake and his patients going for the procedure at Stanford.

- my balance is better - but not OK
- my walking is better - I walk faster and longer but I still use one cane
- I tolerate heat much better but after having a shower my left eye is worse - it is still sensitive to heat
- I can do more physicaly and I do not have the feeling to faint that often
- my vision is as bad as before the procedure
- I still have problems with my crazy BP and pulse - like this afternoon it was 152/92 and pulse was 135
- my fatigue is worse again after having flu, but I also goes to exercixe - first time after 6 years - I do only very slow and simple movements but even thou I get very tired and sleepy
- I am 99 days after the procedure and I for sure do not feel worse than before the procedure
- I think my EDSS is 5,0. It was 5,5 before the procedure.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby AJWANTSACURE » Wed Feb 10, 2010 11:47 am

Nunzio i cant have an MRI because I have a Brain implant. So Dr. Dake said the next best thing would be a CT.

Erika thanks for you update and I wish you all the best with more improvements
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