Author Topic: CSF flow MRI  (Read 776 times)

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Offline Tindar2

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CSF flow MRI
« on: September 19, 2012, 04:11:48 PM »
Just wondering if this is done with or without contrast dye.  Had an mri last week to look at the pseudomeningocele I've had ever since decompression 15 months ago and the radiograapher said they might want me back to do one for csf flow and also to look at my neck in more detail.  I've never had an mri with contrast even though my NS has requested it because I have kidney problems and they are reluctant to do them in case they cause further damage.
 
At the moment I'm just sick of appointments and tests and nothing being done to resolve matters.  I'm so tired of waiting rooms etc.  Yesterday I had to go for a routine mamogram and it suddenly hit me that this whole thing is getting me down.  Don't get me down I realise that it can save lives it  just seemed to be one appointment too many. They made me wait 19 weeks for an ENT appointment because neurosurgery reg said they might be able to help only to be told it's the swelling from the pseudo that's my problems.  I knew it was that anyway what a waste of time and what a waste for a person who really needed a ent appointment.  I'm sure it was just to kill time because they didn't know what to do.
 
The biggest problem is that I feel I have to watch their every move.  No one looks at me holistically they keep making mistakes.  The ent reg prescribed medicine that is toxic for kidneys even though I told him about my kidney problems.  I found out when I checked myself.  I find I am having to check up on everything hence having to check about the csf mri.  It's wearing me out doing their job for them.  Original kidney damage was caused by taking medication that damaged my kidneys and even though it's on my notes 3 lots of medics have tried to prescribe it for me since.
 
I have a new neursurgeon now so I'm hoping she'll know what to do.
 
Sorry to moan just hoping that some one here will understand how I feel.  I've been five years waiting for appointments before and after decompression and I'm hard pressed to think of any where things didn't go wrong.  I just don't want to play any more,  this waiting and worrying is so tiring.
 
Tindar

Offline leanne

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Re: CSF flow MRI
« Reply #1 on: September 19, 2012, 08:17:01 PM »
Oh tindar sounds like you are really being messed about. I'm afraid I don't know the answer to your question, but you sound as though you could do with a hug so I am sending you one. i hope that your new ns can manage to sort out a way forward for you. Will keep my fingers crossed. Take care, leanne x
Diagnosed CM1 April 2011, decompression surgery on 25th October 2012. Second surgery to fix pseudomeningocele 20th December 2012. LP shunt fitted 10th January 2013 and removed 7th february 2013.

Offline eliza

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Re: CSF flow MRI
« Reply #2 on: September 19, 2012, 09:08:05 PM »
Big hugs to you Tindar. Sometimes that wheel we get on just spins out of control, and it seems everything is crap. I cannot throw any light on the mri issue only to say i have hydronephrosis mild in one of my kidneys. Recently i had to go for a liver mri and they asked about using dye. I nearly flipped my lid. They then went on to say that the only way to get a clear pic of what is on my liver was the dye. They did a pin prick blood test thing to see about the kidney and said it was ok to go ahead with the dye. I agreed and needless to say was totally scared in case i reacted to it. Felt like a gobdaw. The outcome was i was fine, and they were able to tell me that the thing on my liver was benign, a group of blood vessels.
I understand your fear and the medication thing agree docs need to read charts and listen. Good luck with the new ns. Just go in there and tell it as it is. I always follow your progress as we both had surgery the same time. I feel so lucky that thankfully i am getting it good. It's the frustration and at times the fedupness that gets to me. But to hell with it all i have once again told myself that right time to actually get my act together and get better and get my life right.
Sorry for rambling. Give yourself a huge hug and clap on the back, for you bravery courage and fight. Keep up the battle all will be great. Love x

Offline lucy

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Re: CSF flow MRI
« Reply #3 on: September 19, 2012, 09:30:08 PM »
Tindar it's always good to have a moan but I know how u feel I was in hosp 2wks ago and only I was on the ball headaches and all frm surgery but a nurse tried to give me another patients medication only I checked and I know what u mean about waiting around 4 appointments I've been dealing with this 2yrs in nov and between my 1st and 2nd decompression I had scans mixed up 3 times and then they didn't scan my whole spine or do CSf flows even though it was requested!i now have another pseudo after a failed lumbar shunt and a vp shunt rang the ward 2day and coz I as in so long they are willing to see me butbim not leaving until I know exactly what the nxt move is coz I agree they easily shrug u off!

Offline lucy

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Re: CSF flow MRI
« Reply #4 on: September 19, 2012, 09:33:00 PM »
Oh and I'm not totally sure about the CSf flows with contrast dye I would be inclined to say yes as when I was in hosp there was 1 MRI I had where I had to take the dye but I was to ill to ask questions but asking my brother he thinks it was

Offline Tindar2

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Re: CSF flow MRI
« Reply #5 on: September 19, 2012, 11:54:32 PM »
Thank you all so much for your hugs and encouragement.  I have to say I usually don't let things get me down even as far as having to keep a check on everything they are doing but this came on me suddenly.  I think people still expect me to be the way I was because I don't usually complain as much as some of them when they only have a head cold(I'm sure you know what I mean).   I am the strong element of the family and of course I'm expected to carry on in that vein.
 
Eliza thanks for following my progress, as you know I do the same with yours.  As far as the mri is concerned I have a letter of instructions from my kidney specialist telling them what to do if I need contrast - I need to be put on a drip which as a consequence will protect my kidneys - and enable me to go ahead with contrast.  Every time we get to the stage of discussing this they decide not to go ahead.  My rheumy ( I have something similar to lupus) told me it's because they would have to take me in for the day to put me on the drip prior to the mri and that's why it's never done.  I'm sure you can understand my frustration this will be the third time it's been discusssed and still not been done and I'm worried about what they can't see.
 
I have to say my rheumies and kidney specialist are great and that does lift my spirit.
 
Thank you all again.
 
Tindar  xxx

Offline Haribo1

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Re: CSF flow MRI
« Reply #6 on: September 21, 2012, 07:24:59 PM »
Hi Tindar. I had a CSF flow MRI done last year at North Staffs. For me it was just like a normal MRI but i was hooked up to a heart monitor while it was done but there is the possibilty of them using the dye. I'd make sure they tell you well in advance so you can prepare yourself. I didn't know until the morning of the scan that they might have to use the dye. That's how organised they are there at telling you things!!
Ps just out of interest, who is your new NS?

Offline Janine

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Re: CSF flow MRI
« Reply #7 on: September 22, 2012, 11:40:02 AM »
Hi tindar, every sympathy, I know exactly what you mean about feeling like you need to checkup on everything, feel a little like that myself :-/.
I had csf flow scans done and no contrast was needed, as someone else posted, I was just hooked up to an extra monitor (on my finger) to measure heart rate.
Hope the scan turns out to be straightforward for you
X
Chiari 5-6mm diagnosed August 2010, decompressed August 2012; daughter diagnosed with chiari and pre-syrinx Jan 2011, decompression july 2011, shunt august 2011, shunt revision october 2011, shunt revision february 2012; mum diagnosed July 2012

Offline emmacos

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Re: CSF flow MRI
« Reply #8 on: September 22, 2012, 06:01:49 PM »
Hi,


Sorry to hear you're still having so many problems...


My daughter Helen is also waiting and waiting for something to be done, or nothing, depending on what they find/say....


Helen went to London last month and had an upright mri scan - they dont do upright ones anywhere else apparently... and on 3rd Oct she is eventually going to have a  csf flow study done at Birmingham Queen Elizabeth with Mr Flint.... that I believe is like a lumbar puncture, so she's def not looking forward to that, but we just hope they may get some idea of what is causing her probs after all these tests.... if not, I dont know what the next move will be....


I think an mri scan with contrast shows the flow of csf doesnt it - Helen has had a few of them - they are no different from a normal mri scan for you - I think they just clip something on your finger, but it wont feel any different from a normal one... it just shows if there's any probs with the csf flow.


Helen has had a pseudomeningocele since she had decompression surgery in 2004 - it was huge at first, but its a lot smaller now - I still think that has caused a lot of her probs, but there seem to be different opinions amongst neuro surgeons about whether they should be surgically resolved or left alone.... Helen's NS and Mr Flint, think fixing it could cause more probs for her in the future...


Difficult knowing what to do for the best...


Hope you get some answers.


Emma.x

Offline Marina

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Re: CSF flow MRI
« Reply #9 on: September 25, 2012, 02:06:52 AM »
Hi Tindar,  I'm sorry you're still going through this love, we both know what we're going through and have spoken of it often. We're not supposed to have to take over our own care, it's up to the Doctors/nurses to read our notes so there isn't the risk of being given the wrong medications. We're supposed to be able to trust these people not have to watch their every move!
Don't let them get you down hunni.
Sending you hugs and spoons
Marina xx
Chiari diagnosed July 2009 Syrinx diagnosed Nov 2009. Decompressed and zipped 17th July 2010.

Offline Tindar2

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Re: CSF flow MRI
« Reply #10 on: September 30, 2012, 04:48:02 PM »
Thank you everyone for your replies.  It seems I'm not to have the CSF flow mri the radiographer thought I needed as I've had an appointment for the follow up for Feb 2013.  I just can't believe it things are getting progressively worse the thought of waiting 20 weeks is just too much and I'm assuming I'll need another mri then because this one wont be up to date.
 
I would scream but it would probably be painful.
 
Tindar  xxx

Offline eliza

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Re: CSF flow MRI
« Reply #11 on: October 02, 2012, 07:30:49 PM »
Tindar sorry to hear that things are going in the opposite direction to what you would want. Is there any way you can go to someone else and get it done sooner. It is just so frutstrating.  How about just being a total pest to your doc., would that work. Sending you lots of love xxxxxx

Offline LesleyLee3

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Re: CSF flow MRI
« Reply #12 on: October 02, 2012, 11:16:32 PM »
Oh Tindar! What a nightmare for you. Pushed from pillar to post and no further forward. I think we've all had mess ups from hospitals in one wy or another. It seems normal to check on our own meds as docs won't. Dont hang around, phone you doc again and maybe get in for a cancellation for the scan - unless they are saying you dont need one now?? Thinking of you lesxxxxx
Decompression 2006, 2007, VP shunt , sub arachnoid shunt 2008. Further decompression 2010 and 2012.