CINE results

Question

I got a copy of my CINE MRI and uploaded some of the pics. I can't tell if the fluid is flowing or not from them since they're just still photos to me but wondered if anyone else wanted to take a gander at them. My herniation does look slightly different in these than in my other MRI.

bledpub · Answer

I'm actually seeing a rheumatologist and a cardiologist so together they ought to be able to come up with something. :-) I am concerned, though, because I'm in an awful lot of joint pain. Nobody seems particularly concerned about it and I can't take NSAIDS due to stomach ulcers. I am wondering since nobody else is interested in helping if I shouldn't get a referral to a pain management specialist, too. The closest one is 2 hours away but I don't think I would need to go often.

Rylanesmom · Answer

And it is a rare form of EDS.  Is your Rheum Dr familiar with the condition?  Since your EDS is vasular an educated EDS Dr is important.  I know the rheum Dr I found here said he treats EDS (it was a pain to find one) was not very helpful and when I asked if he saw much EDS he said no its rare.

bledpub · Answer

I only just found out a couple of weeks ago about the EDS. I wish I had known that when I was pregnant, although maybe not. It might have scared me off from getting pregnant. :-)

I have seen a rheumatologist that I like. I live in a very isolated area and specialists are few and far between.

Rylanesmom · Answer

Were the uterus and gallbladder rupture before you found out you have vascular EDS?  I would think any ER you told you had pain and that diagnosis would have heightened sense of urgency since that causes ruptures.  I know when I had chest pain and said had EDS I was in then ct machine getting very thoroughly checked.  I am sorry to hear about your children.  Nothing hurts worse than our kids hurting.  We all have a long rough road with chiari and yours amplified with other issues and then your childrens illnesses on top of that.  As far as the chiari sometimes it's not the biggest issue and they make you see other Drs or try other things.  Hang in here...praying for you.  Have you found a good EDS specialist?

bledpub · Answer

I've also found with this particular doctor's office that when I was patient it was to my disadvantage. I waited a week at one point before calling because I didn't want to be a bother. And then, when I did call, they had lost my information. So if I had kept on waiting I would have just kept on waiting...The same with the phone call today. I had my husband call. They hadn't called me two days ago because they thought someone else had already and that person thought someone else had...the miscommunication in this situation has been horrible.

SG2 · Answer

I'm so happy they called you. And yes, its hard to be patient when its proven to be harmful in the past and when its (current illness) interfering with your daily life.  Hang in there...

bledpub · Answer

This isn't my first rodeo with the medical field. I used to be very patient and sat back and rolled with the flow. Then, my son died while I was being patient and not being the squeaky wheel. The next time I tried to be patient, my uterus ruptured and I lost a lot of blood and had to have several transfusions and a hysterectomy. The last time I tried to be patient, my gallbladder ruptured and it almost killed me. Now, I am proactive. If I don't take action then nobody else will. 

I might be new to Chiari but I am not new to the world of medicine, doctors' appointments, and treatments. My daughter is the only kid in the entire state that has her abnormality. I spend 75% of my time in doctors' offices and hospitals. 

They did call me back today after my husband left 5 messages with 5 different departments. There is a flow problem on one side. The NS thinks it may or may not be causing my problems. Either way, they scheduled me an appointment for two weeks away. So that is something. :-)

selmaS · Answer

The one thing we all need for this process and post op if and when we have surgery is patience....

  Waiting seems like forever, so live and enjoy ur Easter and b4 u know it the report will be ready : )

linnielou232 · Answer

I'm so happy you got this procedure done and you will soon find the answers you need.  I am thankful for this forum, because everyone on here told me how important it is to get copies of our records.  Please keep us updated. 
Linda :)

bledpub · Answer

No. But as soon as I got out of the machine I asked for a copy of the disk and she burned me one. So there really wasn't time for a report to be done yet. I have signed the forms to have the report sent to me but was told it might be "a week or two." They were supposed to call me on Wednesday with the results but so far I haven't heard anything.

Rylanesmom · Answer

Did they not give you a report?  I always get a typed report with my scans then I can read what is going on.

bledpub · Answer

Hmm, that is interesting. My flow study is very similar-almost no flow around the cerebellum. I'll be interested to see what the NS thinks about it. Contrast definitely would have made it easier to see.

selmaS · Answer

Here is one that u can see an obstruction in- it goes from being able to see the brain and then it goes dark and u see the contrast lit up and u can see where it is blocked.

 http://www.youtube.com/watch?v=oIw2-Wtb1FM

bledpub · Answer

I've been looking online, trying to compare. No luck yet.

selmaS · Answer

Usually the CSF is white and u should be able to track it moving around the brain and pass the tonsils....there r CINE MRI's online showing what to look at so u can get an idea, then review urs to compare.

bledpub · Answer

Yeah, I do. It's hard to see what's going on for me though since I'm not a radiologist and don't know what I'm looking at. It's a weird kid of animation, like stop action. :-)

selmaS · Answer

CINE is done is stills and in animation so that have real time motion to see just how things change.....so she has it in motion as well. or should.

billyz123 · Answer

how many pics did they take for the CINE MRI?  Do you know how to make an animation? it might be really helpful, I've never had a CINE.

selmaS · Answer

Good  : )

bledpub · Answer

I filled out the form. I aways get copies of everything.

selmaS · Answer

Did u request a copy of the report be sent when it is ready?...u can do that by filling out a form and they will send it , usually it can be 2 weeks until a report is ready....

   It could be diff angles and that is y I say it is just my opinion and I am not a Dr ....but that is how it looks to me.

bledpub · Answer

No report with it because Ihad literally just had it done and they handed it to me. 

I see a difference when I'm looking at it. Wondered if it might be different angles or something. I'm going to make a copy of it and send it to Maryland after my PCP does my spinal MRI.

selmaS · Answer

Hi...it does look like the tonsils pulsate and change the flow of CSF ...so I would imagine that there r times ur CSF flow gets blocked....look at pic 6 compared to pic3....it is  a big change it looks like the whole thing gets fatter and corks up the opening.

 JMHO and I am no dr.