Royal Chiari runaround

[niki3350]

Can anybody tell me how they test csf flow, as my story as follows today i attended Hospital for MRI HEAD WITH CONTRAST that was on my letter.

Arrived in good time waited 2hrs then went into have canula???? needle thing in my arm for contrast fluid, ok all well so far!!! have mri then pulled out thinking ok now they will put dye in???? NO they tell me all done.

I ask why have I not had dye they say you dont need it as we have put heart monitor on your finger and we can test csf flow from this and graph we plot from your brain???????

To say im confused is not the word!!!!!  I was informed that phsiologist that was needed to administor dye had been sent home ill and that they had made typing error on letter and were very sorry but I did not need contrast dye to check csf flow!!!!

So my question is this true???  Im angry confused and not sure what the heck is going on, they told me I will be recalled for contrast mri if they cant find results from graphs they plotted today!!!!!

Has anybody out there had there csf flow checked this way accurately!!!!!!

Hugs
Niki x xx

[selmaS]

No a CINE MRI is done with a clip to monitor BP as well as using contrast..it is done to check the CSF flow. if it pulsates with the BP it is an obvious CSF blockage.

From the sounds of it, many r choosing not to use the contrast...not sure why other than the possible side effects from contrast.

[tkilburn]

So is a cine mri the same as an mri with contrast? I had an mri with contrast but no iv they just injected me with some stuff for a really long time. Im just wondering if they are the same. Cause my doc didn't say anything about the results from that one.

[niki3350]

Thanks Honey, I no what you mean about the pee thing, waited for hours in waiting room and kept thinking me next so I will go the loo, then as soon as they take me into mri im like oh god no need a wee,

Think it all in my head, but unlike you they dont bother me im not claustrophobic at all, so guess im the lucky one really.

I did manage to find out strenght of scanner this time aswell it was a 1.5T strength, so hope they got what they needed.

Hugs
Niki x x

[thieb9]

I had my cine mri done without contrast as well. And it did show a blockage, so maybe if you are lucky they got what they were looking for and you wont have to go back. I personally do no like having mri's done.. Im kinda claustrophobic and all that cold air they blow on you makes me have to pee! :)

[niki3350]

Thanks sleepypea and lu797 that has eased my mind as I have got up this morning ready to go on a rampage with the hospital and give them a right ear bashing!!!!!!

Really hope now that they can get results that they needed, but radiologist did warn me as guy that needed to do test was sent home ill that she THINKS she completed test and plotted graph correctly, but if not I would be called back!!!!!

Just annoyed at time that had line fitted and had geared myself up for something that did not happen.

[sleepypea]

I also had my cine MRI done by just putting the pulse ox monitor on my finger. I thought I was going in for contrast too but they didn't give it to me. I was relieved as I really didn't want the contrast. I had a terrible reaction to CT contrast and am now scared to death of any contrast!!! I know they are different types but I still don't want it if I can get it done correctly without it :)
Hope it comes out clear for you with the heart monitor. Mine did so it should. Didn't do much good though because the Dr. dismissed it and said "I just dont know why they order these stupid cine test anyways I can see the flow with out all that!!" I was thinking Oh Boy, here we go again!!
Good Luck to ya!!

[lu7997]

They did mine with the pulse ox monitor (heart monitor on your finger). The hospital I was at could not so cINE flow studies and said that this was a new technique that is being studied. The radiologist came in and monitored while I had my MRI. He said since it is new and not regularly practiced my doctor may notaccept the results but it was worth a try.

Maybe the hospital u went to is using this techniqe already.  Who knows. But it does sound a lot like they messed up.   I didn't have an IV administered for no reason.  

[selmaS]

I am now on topamax b4 bed..so I am still new to it...hoping it helps, I am sitting trying to avoid irritating it until I find what the heck it is...lol....I go back to the drs next week and should have some kind of idea or it is back to MRI's....

The problem is when we go in for the MRI's we r dealing with technicians and radiologists...our drs r not there....no one to speak up for us.....

Even the xrays that were done last week I have no idea if the woman got the spot that was bothering me....so we will see...I hope it wasn't a disk, but I don't want it to be TC either.....sigh....

The main reason is as to y they do this...they go in ...punch the time clock and do a job, and for too many of them that is all it  is, a job.....we need those that go in to work to help others as a means to earn a living mayb then we will see a diff.

[niki3350]

Thanks Selma, why oh why do they do this, if stress makes it worse then dont they realise they are making us feel more ill.

Its just so silly!!!!!

How are you feeling anyway, hope yr pain easing and you are more comfortable.

Hugs
Niki x x x

[selmaS]

Well the first one I went for with dye...I went inside...and then they said they wanted to contact my dr...would I be ok to stay still inside till they got back to me.....?????...ok.....5 mins....10mins....15 mins.....30 or more mins later they bring me out...and I think ok now the contrast....just like u...nope...I am sent home, but b4 I leave I have to make an appointment to come back the next day...get this for one with contrast??????They wasted sooooo much time trying to reach and talk to the dr, that they used up all the time allotted and had to get the next person in.

We all get the Royal Chiari run around at some point....y is the ?????

"selma"

[niki3350]

Thanks Honey bu really dont think the issues with dye was the problem as they had me all preped with needle in and everything to put dye in..

They just messing me about as usual.  Guessing yours was done with contrast????


Total chiari runaround yet again for me, cant take it no more it feels as though it has taken over my life!!!!

HUGS
NIKI X X X

[selmaS]

Hi...sorry, I have never heard of it being done like this...however, it may be something new as there have been an upswing in issues from contrast dyes...

So if they can get the info with out it mayb that is to eliminate more from the possibility of a reaction to the dye????? This is all conjecture.....I just know there r issues with contrast and it may be their way to avoid it if possible.

Contrast lights up smaller areas.....but to watch the flow in real time with ur BP is important if the CSF pulsates, there is a blockage.....and mayb then they will light u up with contrast to see where that might be????

"selma"