Confused. Chiari? Coincidence? Crazy?

[Itsaleedanielle]

I had an MRI to locate causes of on and off numbness in my hands and feet. They wanted to rule out MS, which they did quickly, and sent me back to see my doctor. He told me they found a chiari malformation but said it wasn't significant and sent me a referral to see a neurologist for other causes. Now, I've had frequent migraines since I was a child but never thought they were related. I've also been taking medicines to prevent migraines for years with no help. When I went into the office that did my MRI for the neurologist I peaked at the papers that said my cerebellar tonsils are just below the level of the forman magnum consistent with chiari I malformation. It also said that they didn't think it was consistent with my symptoms and saw no major obstructions. They didn't say much more and no one explained it to me despite the many times I've asked. All I've ben told is that it isn't signifvant to my health now and that it's no worry.

I did research, and then let it go for months beliving my migraines were just migraines and my numbness is just neuropathy, today I had a bad spell though. I somehow (awkward as it is, lol) choked on my on saliva and couldn't catch my breath. When I finally did I started coughing and the pounding pain in the back of my head came on for about 5 seconds before dulling out to just an annoying pain. Then it dawned on me that that was the pain I had been reading about. That was exactly the chiari pain that everyone had been describing. It doesn't come on if I fake cough, but it comes with coughing especially, and sometimes with bending over or playing with my son.

Now I'm not sure if it's just a coincidence, if my CSF flow gets blocked but only during ocassions, or if the migraines I have in upper part of my skull are related. I thought chiari migraines only affect the back of the head, not the front? I'm so confused about whether this is a concern (obviously not a high one from the stories I've read, but Ya know) or if it's something I should ignore all over again.

Do any of you only have ocassionally back of the head pain? Some times I have an ache in the back of my head/neck, but it's just that - an ache or a very very dull pressure.

[Elisaandbucky]

Hello, echoing what both Selma and Nellan responded to you above, look on the list for a chiari specialist - if none are listed in your immediate geographical area, you may have to consider some travel. Many people must travel, but it sure is worth it when you can get some significant answers to your questions. My suggestion would be to keep a detailed pain diary that lists specifically what you are doing before the onset of symptoms. You mentioned your coughing, leaning over, playing with your child. Keep note of those and even some other ones you may notice. When you do see a specialist, your pain diary will be of so much help. I wish you well with getting the cine MRI, as that will also tell a lot.

[selmaS]

  Not  for  us  here, looking  at  your  MRI  we  can  recognize  a  herniation  or  syrinx  and  a  retroflexed odontoid.....but  that does not  mean  much.


  It  is  not  how  long  the herniation is,  but  if it is  creating  a CSF  obstruction....and  how  it is affecting  you  and your  overall health....those should  be  considerations  as to whether your  Chiari is  as  you  put  it "significant".

Many  of  us  do  have  mild  scoliosis....I  do....as  well  as  a few  other  issues...and  sometimes  it is the  related  issues  that can cause similar  symptoms....

Only  a true Chiari specialist  will  be  able  to  give  you  that info......all  we  can  do is  speculate.

[Itsaleedanielle]

We have done a full spinal MRI as well as brain, but no CINE MRI yet. My doctor referred me off to a neurologist and is leaving him to determine whether it's significant when he looks at it. There seems to be only a few things on my MRI other than the extended cerebellar tonsils. I have a mildly enlarged spleen, prominent adenoids, and a very minimal left thoracic scoliosis. I actually have the pictures of my MRI on my computer. Is there a way to tell how significant a malformation is by looking at a regular MRI?

[Nellan12]

Hi, Selma is sooooo smart when it comes to all of this confusing stuff associetated with Chiari !!! But Selma has given you very good leads a lot of the things that I have done, for years I have been misdiagnosed..every time I went to a Doctore they always said, migraines or tension headaches,and they were always in the back of my head and there are a lot of similarities in the sytems that you describe ...but I didn't find out I had Chiari & CCI till they did and MRI of the brain & spine ...and yes please fine a good specialist!!!!! It will make such a big difference... Good luck :)

[selmaS]

   In   addition  to  the CINE  MRI,  MRI's  of  the complete  spine,  cervical, thoracic  and lumbar  should  be done to  rule out  disk  issues,  tethered  cord, and  syringomyelia.

Then  testing  for  connective  tissue  and  auto  immune  conditions should  be  done.,...it is  overwhelming  I  know,  but  will help in  the long  run  to  do  this now, as  these  related  conditions  can  affect  recovery  should you  require  surgery.

[Itsaleedanielle]

Thank you! I'll definitely research the list and see what I can find. I'm pretty sure the pain when I cough is from the block of flow, but it seems to only happen while coughing and doing certain activities like bending over or tossing my son up into the air. I'll have to urge my neurologist to send me for a cine mri as well because we didn't do one.

[selmaS]

   Hi....Chiari  symptoms  can cycle  and change  so,  it can be  hard  to realize  how  we  are  feeling  is in  fact  a symptom.
Plus, Chiari  has a few  related  conditions  that  can cause issues and symptoms  similar  to  Chiari  so  they too  need  to  be  ruled  out..

Certain things  we  do  can  cause  an  obstruction  of  flow...did  you  have  a CINE  MRI?  A  regular  MRI  may  not  show  the  disruption  of  flow  as  they  are  still pics  and  they  can  not  tell  from  that a CINE  MRI  is  a moving  account  of  how  the fluid  is moving.,...

Find  a true Chiari specialist, that is the other  part of  your problem....Drs are  not  aware  of  this condition  or  the related  conditions and how  they  can  and  do  affect  us....see  our  list of  Drs  to help  your  research  Dr  as  the  list  is not  a referral  nor  an endorsement  of  those  on the list.

[Itsaleedanielle]

Also! If this is just early signs can chiari progress?