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I finally found a doctor who is willing to help me. His specialty is neurointerventional radiology. He wants to schedule me within the next few weeks to have a venogram and an angiogram. I have read so much about MRV and Doppler on this forum, that I am curious as to who has had the two procedures done that I will be doing. I am so excited that I found someone willing.. I have called him my angel. When he walked in the room he said "You realize that you are venturing into unknown territory." We talked about the research and he was very intrigued. He said the risk of the procedure would be minimal but the reward could be great! Let's all pray, please!!

SCGirl wrote:He said the risk of the procedure would be minimal but the reward could be great!

This is what swayed me to pursue it for myself...minimal risk, huge potential payoff. Hope all goes well for you and congrats on finding a neuroradiologist open to exploring this!

Thank you CeCe! I am very excited and happy to have someone listen!! I have TIMS to thank for everything that has happened, this forum is what got the ball rolling.

I wish the very best of outcomes for you-- please keep us posted. Where are you having your tests done?

Venogram and angiogram should be very effective in terms of finding and treating CCSVI.
Sounds like your doctor is determined to check your veins out.
I am sure everything will be alright. PLease keep us posted.

Congrats.

Did he say angiogram or angioplasty:
angiogram is the test, angioplasty is the treatment with balloon angio.

I am scheduled for the angiogram first with the venogram ( on April 2nd He said he would know that day if I had any stenosis. Once we have the tests, then we will go from there. He said he does those tests on a regular basis and the risk is minimal. I am excited and nervous..

SCGirl,
Hello neighbor! Wow, what a wonderful thing. Sounds like you found a good doctor. Keep us posted and let me know if you need anything. Also, Dr. Dake told me he would be happy to talk with any doctors about CCSVI, so if you want me to have him give your guy a call let me know.

Thank you so much Magoo! I continued to hound the doctors in the US until I found one not only willing, but very interested. I will speak to him about your contact with Dr. Dake when I see him on the 2nd. That could be very helpful to me! I will keep you all posted. I would not be where I am without TIMS..... I am very grateful.

SCgirl,
Since you must be nearby, I am ecstatic to see someone get testing scheduled in this area. If and when your doctor is willing to schedule others for testing, please PM me. After reading TIMS daily since November, your post motivated me to join at last! I hope you get great results.
peach

Hey GApeach -
I had to write letters all over our area before I got a response from the wonderful doctor I am seeing. Once I know he is comfortable with me giving out his name, I will certainly let you know. My wish is that everyone can be treated for this, we all deserve some hope. Pray for me on the 2nd and I will keep you posted. Don't give up, this is the only life we have.

Hi SCgirl,
having a venogram means they are going to place a catheter through your inguinal vein up to the jugular/azygous vein where they are going to inject a contrast medium to see if any blockage exist. At the same time they can pass a balloon a perform the angioplasty.
Not doing so I think is unethical; No reason to make you undergo basically the same procedure twice. Unless I am missing something....and maybe they will do a less invasive procedure as ultrasound or MRI/MRV.

Thanks Nunzio.. I didn't realize that. The doctor acted as if he would do the venogram to see if there were any stenosis and then we would discuss further procedures. I will have to inquire as to why he will not be doing both. Thank you so much for the information!

I realize it is a more invasive procedure than MRI/MRV/ultrasound, but it is still relatively simple.
Gosh, I just had an enoscopy test and that was more risky that the venogram with the anesthesia and risks.
Everyone needs to weigh the risks for themselves, but I think having a venogram is a really good way to diagnose and find CCSVI. That's just my opinion.

So Rhonda, do you think it is unusual to do the venogram without the angioplasty? I have no reservations about doing the venogram and angiogram.. I am just ready to get it done!!