My results are in from Cine Mri

[Liv1323]

I was diagnosed with Chiari in Febuary of this year, 9mm shift.  I was told by 2 neurologist ( not Chiari specialist) that it was nothing to worry about it.  I have been experiencing symptoms for 2 years now, except for my migranes that have been with me since teenage years, I am now 37.  Dr's originally thought I had Lupus, then that was ruled out, MS was next on the list, after 2 MRIs they ruled MS out.  I have over 10 white matter lesions in my brain but tthey are not consistent with MS plaques, they are indicating microvascular ischemic disease, more unusual for my age group...I am a smoker so the damge can be caused from that, but I have not researched it yet.  I have significant degree of obstruction of CSF flow as well as absent of CSF flow in a couple of areas.  Unfortunatly my Cine Mri was only of my brain so I still need one of my  entire spinal cord.  On top of that- incidental finding of extensive lymphadenopathy with extremely large jugulodiagastric lymph node - which is unrelated to Chiari.  This was a lot of info to receive while I was at work today, tad overwhelming, hell extremely overwhelming.  I just need a few days to wrap my head around this.  Thanks for listening everyone.  I am happy I found this community, I feel like I belong to a group of people who understand.  Any input or similar experiences, please share.  Thank you, Liv

[christianirc]

I had those same things on my MRI and my doctor told me it is not uncommon. I was 35 at the time.

[andy57]

Yes you were thrown a lot of info,and over the phone?? I'd keep a notebook handy,take someone to dr's w/you,2nd pair of ears works well. And by all means get a specialist. Good Luck,dr's in the past have treated me like I was nuts. But I kept on plugging and still do,its a hot mess but we survive. The bad thing w/this stinking Chiari Malformation,if the dr's cant see it they dont get it O.o. (a lot of them)

[selmaS]

  My Drs also thought I had LUPUS and it was further testing that resulted in my Chiari DX.....the symptoms r similar to lupus and MS and lymes so we do have to rule them out.

U would not necessarily have pain in ur legs, it all depends on how ur Chiari is affecting u...if u have a CSF obstruction and other related conditions as to what symptoms u may have.

  Congratulations on choosing to quit smoking all the best to ur and ur DH this difficult task as it will benefit u both : )

Many of us had Drs that fluffed us off as well as the DX of Chiari....once u see a true Chiari specialist u will see a difference in how u r treated.

[Liv1323]

Thank you for your concern and response.
My husband and I are going to quit smoking this weekend, a difficult task to do but one that is a must, I do not want to cause any further damge or increase any symptoms.
Originally, my primary thought I had Lupus after 2 years and more blood testing they just ruled lupus out as well as Lymes and MS.  I do test positive though for and autoimmune.  This is all so confusing with so many disorders that correlate with each other however at this point with the above mentioned ruled out i can only assume my symptoms are being caused by Chiari.  Yesterday, I saw a MS specialist for a second opinion, he believes my symptoms are all caused by headaches...Is that possible? He also told me that if it were Chiari I would have sharp shooting pains down my legs, He didn't even notice the swollen lymph node i had, when I brought it up he said its probably due to working around sick people.  I know It is possible to have swollen lymph nodes if your body is fighting off an infection but he expressed no concern at all over it.  Honestly his responses annoyed me, lol  thank you for listening :)

[Liv1323]

Thank you for replying.  My husband and I both plan on quitting smoking this weekend, it s going to be very hard especially with the extra stress I am under but I must do it for my health!
I believe you are correct about the lymphadenopathy and lupus.  When I first started to have symptoms and an undiagnosed fever they suspected Lupus, I had a swollen lymph node back then, 2 years ago and i went through a full work up to rule out lymphoma and infectious disease.  Just recently they ruled out Lupus as well as MS.  I test positive evertime for an autoimminue but am told it can be a false reading.
I do plan on seeing a Chiari specialist considering my neurologist thinks all of my symptoms are being caused by headaches.
I work for a Radiation Oncologist and the very first thing he mentioned was head & neck cancer, he did a physical exam and noted symmetry on both sides and my lymph node was not hard but expressed concern in following up with a CT to see what is going on.
I wish you and husband all the luck in receiving a diagnosis in a timely manner, from my understanding it can be difficult at times to diagnosis autoimmune diseases.

[selmaS]

  
  Hi...I have to say the fact u smoke also popped out at me since smoking restricts and constricts flow of blood in ur veins this is not good for those with Chiari that have other flow restrictions.....so I hope u r able to look at quitting as it may help how u feel but will improve ur overall health outlook.

Those with Chiari r prone to connective tissue disorders as well as auto immune disorders, so lymes, Lupus and MS are conditions the Drs must rule out...and it is possible to have more then one issue going on...so do look at all issues that show during testing.

[AnnieDear]

Please, please, please make sure to follow up with your doctor and get answers. While these other findings can be nothing, can be the result of an infection (cold, etc.), or could be something more serious, the fact that you mentioned you are a smoker worries me. I do know of one person who was a smoker and had similar findings (as far as the lymphadenopathy and jugulodiagastric lymph node) and his diagnosis was oropharyngeal cancer . Not that I'm telling you that's what it is, because I honestly have no idea. Just that those two things popped out at me, along with being a smoker, so I just wanted to make sure you follow up with the physician to rule that out.

Another note - isn't lymphadenopathy possibly related to systemic Lupus? I thought I read something about that. My husband is currently going through testing for Lupus right now so I've been doing a lot of reading. So lots in my brain and it doesn't always match up - I could be way off ;)

As for the Chiari, I would probably get a third opinion. Preferably from a Chiari specialist. Or even just a neurosurgeon who has treated Chiari. The size of the herniation isn't what's important; the extent of the symptoms and the CSF flow is important.

Do take time to absorb the information! It can be a lot to process. Follow up with your doctor and just ask questions. We all wish you the best.

Annie