Just had my CINE MRI

[Jennanurse]

Hi all I am 32 and this is my first post..I have had several issues over the years..lump in throat had upper GI and small bowel follow through..gagging daily with vomiting at times for a year..headache..neck pain..diagnosed with depression and anxiety..zoloft-xanax did nothing..after the repeated gagging I went to GI CAT-scan nothing ultrasounds finally they go in and found multiple adhesions and took out my appedix..yay I'm better!! NOT!! After surgery I was so dizzy I was unable to walk..they thought infection antibiotics-steriods nothing..torticollis more steriods nothing..MRI of brain and cervical spine show crowding and chiari malformation..The dizziness is so much more then that now I have what I can only call "episodes" at first weekly then couple times a week then several times a week. Its like someone put a hose in my ear and turned it on. Barely hold head up can not walk without assistance. I had 2 episodes which I simply went down I was awake but could not stop the fall..

Ok so I have been lurking for about 4 months found chiari specialist from list and saw him today..He said all the right things won't do surgery unless I need it..may not solve all my issues..Ok I say 50% would be fine with me!! He sent me for CINE MRI immediatly and now I am sitting in a hotel waiting for results tomorrow. He basically said if I have a flow problem he recommends surgery if not then we will talk about things..I know only all of you will understand when I say I hope it shows flow issue...I am so miserable :(  Oh and Selma I did make appt with recommended Neurologist and my family doc is running rountine test plus checking for other issues common to chiari as I have read..

Have any of you had a normal CINE mri? If its not a flow issue why does it feel like I have a bowling ball for a head ;) Any thoughts or suggestions...I am so sick of being sick and tired..I am a Nurse myself and I can tell you I didn't think I was bad about listening to people but I promise all of you there will be one Nurse from now on that will ALWAYS listen to her pts. and be their advocate :)

[selmaS]

  I really am not sure y some do not list it, and  all NS's can do chiari surgery, but may not have the experience with it that NS that does just chiari and chiari related surgeries will....that said, there are more and more NS's stepping up and learning more and getting the experience...and we do not know who all of these NS's are, and y we say to research them.

Another problem is being starry eyed over a big name clinic or hospital instead of how much actual experience with chiari the dr has....

  The only way to find out is to have a visit with him....and trust ur gut and know there r NS's that will offer surgery even if it is not a specialty of theirs....and u want the best for u, as u said it is important to u and it is a big deal this is a major surgery,....so, if u r comfortable with the Dr and his credentials that is what matters.

But do get the answers u want...u do have the right to ask and the right to get them.

[Jennanurse]

I did look at his specialties when I first saw his name mentioned on the board and asked some other nurses I knew at the hospital about him..It doesn't say chiari but he is head of nuerosurgery does alot of surgeries similar as far as the list...I also googled him and found him on several other websites all with rave reviews as far as chiari...

Also he was highly recommended by nurses there..Also my family doc when I said his name she said she had done her internship at Emory and knew his name immediatly and said he was well know as an excellent surgeon..I did ask how often or how many times he does the surgery he said all the time and he doesn't know exact number but frequently and had just done one the week before..

Honestly I looked at the list on here and other websites for docs in Savannah, Jacksonville, and Cleveland none of them when you go to their personal websites say chiari isn't that strange?? Do you think because the other things they list "sound" more critical they don't list them? He did say as far as the kind of surgeries he does this is on the lower end of difficulty. I get what he was trying to say he goes into the brain and won't be treating me for things like stroke anuresum brain Cancer..but I was like well its serious to me..he was like I understand and I'm not trying to say it has no risks..thats when he went on to explain csf leak dura problems..

I really do feel confident with him and that was my one most important requirement I had to walk out feeling good about doc..after so many docs brushing me off giving me all kinds of different diagnosis. ya know?

But I will not have surgery with him if I don't feel like I have all my questions answered and feel good about him still..Thanks so much Selma for all your help!!!

[selmaS]

  Did u check his area of specialties?

http://www.emoryhealthcare.org/neurosurgery/surgeons/daniel-barrow.html

[Jennanurse]

The doc is Daniel Barrow at Emory in Atlanta...I really did feel like he laid it all out for me..this is what it is..he did say if I had no flow issues he would NOT do surgery..he also told me there is no guarantee it will solve 100% of my symptoms..told me about the procedure and said it doesn't happen always but did inform me of CSF leak and issues with dura patch..

I talked to the nurse and she said I have severe flow issues and I need surgery right away..I don't know if he said those exact words..or he just said yes she needs surgery and SHE can schedule as soon as she wants ya know?

I think I was just so excited to have an answer..and a surgery ok ya know? I don't want to be stupid though so I want to ask all the right questions and get all the proper tests but if the end result is surgery with this doc and I do feel comfortable with him then I want it ASAP because I am having episodes almost daily with the pressure (feel like my head is literally going to split open in the back) like I feel for fluid it is so bad..I know everyone on this board has been or is miserable like me so I don't want anyone to think I am down playing their issues :(

I will call tomorrow and speak to the nurse about the dura patch or when I will see him before surgery to ask these questions..I don't want to aggravate him just want to make sure I make the right choices...

[selmaS]

NO!! u need to release all of that and y we have a thread to vent on Mondays, but u can vent netime u need to...goodness u do have plenty going on,.....

Ok..well not all Drs on our list may be true chiari specialists....the list is to help u find names to research and they r names of Drs that did successfully treat a member for chiari. That said, no one should just go to a Dr on the  list feeling they r going to a specialist...

And not knowing who u saw, I can not say nething about the Dr himself....it just seems u have more questions then answers after that visit.

I will say this, almost all chiari Drs unless it is an emergency situation will give u the decision about surgery, they give u the info, but u make the choice. Sometimes more testing and even PT will be done and meds tried to show that surgery is the only viable option not only to themselves but to ins companies....

Financially I know how u feel...I no longer have an income and it has made things tight...I am so use to having my own money and doing things myself...

   Can u send copies of ur MRI to the other Dr for review?...b4 drving up there?

    

[Jennanurse]

This doc was on the list for chiari specialist on this board :) He was not nice or mean he was like this is what it is..I am not going to perform surgery unless you need it..I was kind of upset at first..but at the same time I have lurked long enough ;) to know that if he was willing to do surgery without any further testing or he said its the cure to run for the hills :)

They didn't say how soon just ASAP and severe blockage I will call doc back with list of questions about patch further tests like elher danos sp? and thyroid hormones whatever and full spine mri (they didn't have CINE mri here in Savannah) so he walked me straight from my appt yesturday and scheduled it was in machine an hour later..I was happy with that but felt like my appt was cut short making sure I got the test..

I had my list of questions..didn't get to them..I do have an appt at Cleveland Clinic May 15th but I don't know if I could handle the drive (13 hours) or if I should wait this long..but the thing is my family is there...My husband and children are here 15-12-10..I don't know how much help I will have after..

My husband wants to stay home as long as he can but with me not working for so long we are broke already I honestly don't know what we are going to do..My Mother has breast Cancer and has been fighting it for almost a year so we have all kind of used up savings in her battle..Also my son has cystic fibrosis and it is difficult to care for him the way I am..Ok I am rambling wants you open the flood gates lol maybe I should go back to lurking lol

[selmaS]

  Well, is this Dr well experienced with chiari...were u checked for ehlers-danlos?....if u know u have scar tissue, u may want to use pericardium for a patch instead of the synthetic and bovine and cadaver....EDSers tend to have a higher risk of rejection...our own skin when we have this issue, tends to be a better fit.

If u do not feel comfortable with this Dr, get a 2nd opinion....but, u r saying they r saying asap for surgery...and I would ask how soon they feel u should have surgery and what they feel is going on.....

Sometimes we do not have time to look around.....so do ask what the time frame is and y.....

[Jennanurse]

Well doctor called and said I have severe blockage didn't tell me what percentage..They recommend surgery as soon as possible..so now I am waiting for private scheduler to call me..

Now what?? Glad I have answer I'm going to ask for full MRI and check for other issues..Can anyone give me a list of sorts..just trying to cover everything before surgery so I know how successful it really is ya know?

Oh and I have alot of scar tissue from previous surgeries..So I don't know what kind of patch he should use..don't know how or when I can ask this question...ughh don't get me wrong I am so glad to have an answer...but now I have a whole lot more to think about :/

[selmaS]

  Hi...well with PTC it depends...which came first with it and chiari can usually be determined by looking to see if  the  chiari is congenital...

Not all with herniated tonsils have chiari, but will have chiari symptoms....

Chiari is the malformation of the skull, so if the skull is not malformed, it is considered to be acquired chiari and it would be acquired from excess CSF from the PTC.....

  Those with congenital chiari the blockage of CSF can cause the PTC to develop some times b4 surgery and many post op.

  I hope this helps.

[Rylanesmom]

That is right size and herniation don't matter:) flow or syrinx does.  Lots of prayers i remember that feeling well....and just wanted the answer to be I can help

[Rylanesmom]

No it's a related condition...I believe chiari caused PT but that is a different debate.  It is when there is increased pressure in head and head acts like there is a tumor but there is not.  I did have a csf blockage so I am not surprised increased pressure in head.  Some have PT and need a shunt...it just depends.  Your NS will be able to read the disk:) when do you see him?

[Jennanurse]

Well Im still in Atlanta I just called docs office left message for them to call me with results and then I called radiology they said the disk is ready but not the report? Anyways I'm going to pick that up now and hope they have some sort of report for me..

So the pseudo tumor caused chiari? Im confused did they see this on MRI My original MRI said overcrowding low-lying and chiari with no measurement when I called the imaging place they said 8mm but that it was well rounded I looked at pictures and it is clear and some are rounded some are peg shaped?

Anyways my doc who is Daniel Barrow-Emory Clinic didnt even comment on herniation said it doesnt matter flow is what matters and thats why he sent me for CINE MRI so now Im headed to hospital wish me luck!!

[Rylanesmom]

Please let us know what you find out today:) hugs and prayers!

[selmaS]

  Hi and welcome to the forum officially : )

Well besides PTC that Mel mentioned in the above comment, it can be ehlers-danlos....this can cause cervio cranial instability...it is like trying to balance a pumpkin on a toothpick....and at some point it slides down onto the pick....

This cause a lot of pain...many with this may also have a retroflexed odontoid...so u may have some flow, but have some issues...

  I am glad u found a NS and r getting the testing...do  let us know what u find out.

  Normal CSF flow....hmmm not sure  about that....I think most that had surgery had some diminished flow....

[Rylanesmom]

I have pseudo tumor which also causes pessure in he head.  I did have csf lock age and 2 months post op now know that my issues we hiai and pseudo was caused by chiari but not causing my major issues.  Hugs and prayers I too was praying simply for a this is what is wrong with o.  I was told my chances of improvement decreased based on connected issues yet 2 months post op I am so much better.