Chairi 1 malformation

[jenniferk86]

I was just diagnosed with this, what does this mean, anyone have a clue? any support would  be helpful

[addicted2harleys]

Thank you, Sarah.  :)   Luv you, too!!

Yes, I will do the same, Jen.  After my Baylee had her brain MRI with the CM1 identified, she had to go back and get another one of her spine.  Her ped. neuro requested it.  You may want to call the neuros office and make sure you get this done if he is going to need that to.  Might save you a wasted visit.  

I am picking up Baylee's today.  I am quite interested in the results.

Hugs,
Addi

[jenniferk86]

Thank you :)

[Sparkysarah]

Sorry to hear the news about your diagnosis, but glad for you that at you have an understanding of what is going on in your body and are able to go forward and make decisions for yourself about how you go forward. Addi is a great advocate and has given you some helpful leads and good advice. Take care and good luck.

Best wishes

Sarah

[jenniferk86]

i will let you know, would you let me know as well?

[addicted2harleys]

Still keep me posted, okay?

Addi

[jenniferk86]

I got a refferal to a great specialist in colorado dr. john oro... so we will see what he has to say.  his receptionist called today and asked me about all the symptoms and I have all of them, so we will see what happens.  Thank you guys for your support.

[SassySharon]

This is your actual diagnosis

[addicted2harleys]

I believe the report gets you your dx.  It did for my daughter.  Her report indicated a 6.5 mm with her left tonsil.  

Did you get your appointment with neurosurgeon?  You may want to look on the CM1 forum for the topic of specialists.  From what I have been reading there, it is best to go see a surgeon (and neuro) who specialize in the disease.  Same as people here on this forum urge you to see a MS specialist.  The CM1 forum has a thread that lists specialists in all states that members of that group have been to see and got good results.  

I am sorry it has been confirmed for you, but at least you now have answers....which is always a good thing.  Keep me posted on your journey, ok?  We are kinda following the same steps at this moment.  

Hugs,
Addi

[jenniferk86]

I just got my report and it indicates that my cerbellar tonsils descend 7mm below the foramen magnum.  The report was interpreted by a benjamin aronovitz, which I assume is the radiologist that reviewed my mri.  the report says impression: chiari 1 malformaiton.  Does this mean I have a diagnosis or do I have to go through other steps in order to get this diagnosis?  My primary called me and told me that I had chiari 1 malformation.

[SassySharon]

Hang in there sweetie!!  I am rooting for you!!

[jenniferk86]

I have the cd, just waiting for report. I'm not scared,i actually have hope now,i would def. Do surgery if I thought it wild help my symptoms, my symptoms are so bad right now I'm almost willing to try anything.

[addicted2harleys]

You need to get a copy/cd of your MRI and report from the imaging center you went to.  Always, always get copies of your tests and keep them all together.  I, personally, would want to know what they saw on the MRI that gave the dx of CM1.  

Spent some time on the other forum and just read through some of the posts.  Actually, don't pay too close attention to the surgery ones just yet.  A dx doesn't mean automatic surgery.  Maybe just stick to the web pages until you know more about your dx.

It will probably be quite scary for you reading about everything.  Try to relax and don't put yourself in all the bad stuff.  After I began researching it and talking to RedFlame, I was a bit overwhelmed.  My daughter is 15 and the thought of her having any of these surgery quite frankly scares the poopy out of me!   But, I have settled down now.  We are waiting for a visit with a pediatric neuro.  I am not going to worry or stress out until I learn more about my daughters dx.  

Hang in there and get your cd and report!  :)
Addi

[jenniferk86]

My doc just received the report from an imaging center lookin for ms and I dont know what the report says all he did was call me and say I had it and that he was going to refer me to a neurosurgeon right away.  

[addicted2harleys]

Shoot!  I just had a bunch of info for you here and it all disappeared!  :/

Anyways, I have some links for you for info on CM1:

http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Chiari%20Malformation.aspx

http://chiarione.org/faqs.html

http://www.mayfieldclinic.com/pdf/pe-chiari.pdf

Just a few to get you started.  My daughter was just recently diagnosed, as well.  We also have another member on here, RedFlame, but she has quite a bit going on for her right now.  She has been popping in and out, but I know she will eventually post a response.  Just give her some time.  

There is a group for CM right here on medhelp.  They seem to be a good group of people, and informative and supportive.  Here is a link for that group:

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

I am sorry that you have been diagnosed with this but happy for you to get answers.  What did your MRI show?  Were you diagnosed by a neuro or a regular doc?

Hope this helps. Hang in there!
Addi