If you were misdiagnosed as neg after a Venogram, is ....

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If you were misdiagnosed as neg after a Venogram, is ....

Postby adamt » Thu Jul 08, 2010 7:25 am

it necessary to then have another venogram on a seperate day to the balloon angioplasrty - if you are using a different doctor.

I had a venogram last month which was negative - i was told i didnt have any stenosis, missing veins/vales, no problems at all

but after showing dr sclafani m images from the venogram., he disagrees with the negative diagnoses and says my narrowing is consistent with CCSVI


So i plan to go to Germany for the balloon angioplasty but the dr says i must have a venography Again as he has to "exactly plan the catheter movement".

Now as the veno will be 1-2 days before the ballooning, and will cost me 1200EUROs, is there any need for another venogram on 1-2 days before angio?

i have sent the German Dr my DVD's (video/images) of the procedure - which he should recieve in a few days.

I personally dont see the point in having another venogram 1-2 days before the angioplasty, as last month when i had the venogram, the dr was going to balloon at the same time - but felt i didnt have any CCSVI so didnt

What do others think?
should i politely 'demand' to not have another veno and go straight to the alloon angio?
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Re: If you were misdiagnosed as neg after a Venogram, is ...

Postby costumenastional » Thu Jul 08, 2010 7:32 am

adamt wrote:So i plan to go to Germany for the balloon angioplasty but the dr says i must have a venography Again as he has to "exactly plan the catheter movement".


Sorry but this sounds a bit "out from this world" to me. Are you sure you got it right? I mean the process is the same. Why do it twice? Am i missing something here?
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Re: If you were misdiagnosed as neg after a Venogram, is ...

Postby adamt » Thu Jul 08, 2010 7:42 am

costumenastional wrote:
Sorry but this sounds a bit "out from this world" to me. Are you sure you got it right? I mean the process is the same. Why do it twice? Am i missing something here?


yep those were the dr's exact words

i thought it would be unnecessary to have a veno again, especially as it would be 1-2 days before i have the angio
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Postby costumenastional » Thu Jul 08, 2010 7:44 am

What can i say? If he thinks this is the way to go he may well have his reasons... it looks like planning it down to the smallest detail. And this would be great if it wasn't for the money...
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Postby sbr487 » Thu Jul 08, 2010 8:27 am

I think that gives Dr time to analyze the case.

There was a posted here who underwent treatment in India. The Dr disappeared in the middle of the procedure for 45 mins. When he came back, he told he was analyzing the case and completed the procedure.
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Postby Cece » Thu Jul 08, 2010 8:49 am

I would probably bite the bullet and pay for the venogram again, if that's how the doctor likes to do it, it's probably how the doctor feels most comfortable having a plan before he goes in with the catheter. Different docs do things differently and all.
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Postby TMrox » Thu Jul 08, 2010 11:28 am

I'm glad that Dr Sclafani had a look at your images.

Do you know where your narrowings are? Are they in the internal jugulars or azygous?

I agree with Cece, if this new doctor wants to have another venography let him do so. It seems that your previous French doc did not get your diagnosis right, and who knows what else this doc missed. Probably did not check all the right veins.
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Postby adamt » Thu Jul 08, 2010 12:18 pm

thanks for the replies,

Dr Sclafani said he noticed four things:

1. right and left jugular veins at confluens stenotic = the jugular veins look narrowed as they enter the chest
2. questionable mid-azygous abnormality, possible stenosis
3. may thurner = narrowing of the left iliac vein
4 lumbar vein hypoplasi = the lumbar veins, that drain the lower spine, are poorly developed


I just feel spending 1200 EURO for a Venogram which i just had last month, unnecessary
plus i will be having the veno and angio on 2 seperate days!

Any tips what i can say to the Doctor to persuade him to skip the Venogram?

i thought using an x-ray and seeing my venogram dvd was sufficient in understanding the layout of the veins, so would be able to "plan the catheter movement" without the need of another venogram!

it seems like a wasted unnecessary expense
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Postby Cece » Thu Jul 08, 2010 12:30 pm

Just ask him directly, explain the financial burden, offer the current images you have. If the answer is no, he needs to do another venogram, then it is your choice whether to go with him or not. Wishing you the best.
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Postby Lyon » Thu Jul 08, 2010 1:01 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:01 pm, edited 1 time in total.
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Venogram is part of the Venoplasty

Postby MarkW » Thu Jul 08, 2010 1:16 pm

A proper check (Selective Venogram) on your veins prior to Balloon Venoplasty is an essential step. The surgeon/radiologist uses the guide wire used to inject dye for the venogram to ensure the balloon is correctly positioned. No doctor would risk inflating the balloon in the wrong place by using someone elses venograms.
Sorry about the extra cost.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby TMrox » Thu Jul 08, 2010 1:23 pm

adamt it seems that your previous doc missed quite a lot of things!

Have you contacted this doc? If I were in your positon I would be very angry and would be asking for a refund.

Imagine if you had not contacted Dr Sclafani.

You would still think you do not have CCSVI. I know that this misdiagnosis also forced you to re-think whether you indeed have MS.
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Postby adamt » Thu Jul 08, 2010 1:32 pm

i fully appreciate what you're saying, but he wont be doing the veno and ballooning at the same time.

i will have the veno on say Monday and the b angio on Tue/Wed

So i dont see how its necessary if theres a 1/2 day gap between veno and angio
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Postby TMrox » Thu Jul 08, 2010 1:45 pm

I did not have the veno and angioplasty at the same time. There is a maxiumum amount of contrast that one could have in a day.

I had the veno on a Monday. I actually reached that maximum amount of contrast recommended in a day as my stenoses were difficult to reach in the venography.

I had the angioplasty the following day. I know that other surgeons also prefer to do the angio one or two days after the venography.
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Postby CureIous » Thu Jul 08, 2010 6:17 pm

How do they do angio without seeing where they are going in real time? This doesn't sound right at all. Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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