Do I have chiari malformations?

[courtneybreaud24]

I have been diagnose with a connective tissue disorder and I been having chiari symptoms for awhile now,
Severe Headache and Neck Pain
Dizziness
Vertigo
Ringing in the ears
Difficulty swallowing
Palpitations
Muscle weakness
Impaired fine motor skills
Tinnitus
Chronic fatigue
Painful tingling of the hands and feet
Scoliosis
and tachycardia to name a few, I been to numerous doctors cardiologists, rheumatologist, geneticist, and an orthrepedic surgeon. I been wanting to get the mri, but no doctor has ordered one, I am running out of options the only one that seems to listen is the genecticist and I never heard back from him in a month, oh I do have other diagnosis fibromyalgia, osteoarthritus and vitamin d deficient, being tested for marfans and dysautomia. Any advice would sure help!!!!!!!!!

[selmaS]

  Hi...do u have a Chiari NS ? If so, they would be a great choice for this....I know u were not DX'd with Chiari but they do treat ICP, and syringomyelia and hydrocephalus so they can place a shunt for u.

[courtneybreaud24]

so I will need a shunt for my fluid due to my Dandy Walker Syndrome, now to get a doctor to do the procedure!!!

[selmaS]

  Hi...so what is the other reason? Did he mention it if the patent foramen ovale is not the cause?

I read from a Mayo Clinic site, Most people with a patent foramen ovale don't know they have it, because it's usually a hidden condition that doesn't create signs or symptoms.

So I wonder what ur Dr thinks is going on?

[courtneybreaud24]

I have patent foramen ovale, doctor said it is nothing, that their is another possibility for my symptoms of dizziness and lightheadness and shortness of breath, I will follow up with a cardiologist just to be sure.

[selmaS]

  Good luck <3

[courtneybreaud24]

I will ask the doctor what we will do now, I will keep you posted on what happens.

[selmaS]

  Hi...not sure if it is a hole or a flap that does not work correctly....mitral valve prolapse could be an issue...and that is related to Ehlers-Danlos which is a condition many with Chiari have, but not all have the mitral valve issue,

Do keep me posted on what u find out.

[courtneybreaud24]

Well more news, my new test I took measured my blood flow, was fine to my head, but was told I had an opening to my heart, is that the same as a hole, it would explain all my symptoms.

[selmaS]

  No meds that can help with ur symptoms?.....I understand avoiding surgery it should always be the last resort, not the first choice....

Do keep us posted on how u r doing <3

[courtneybreaud24]

nothing much they can do I could therapy, but that doesn't help I tried it, their is a shunt surgery but it is too risky they don't do it where I am from it too risky of a surgery because it may cause more harm to do the surgery.

[selmaS]

  Is a treatment plan available to u and in place?

[courtneybreaud24]

he looked at the MRI he did the test and my I had trouble walking and with my motor skills he noticed part of my cerebellum was not their, also the fluid that wasn't supposed to be there, very fortunate to not have the hydrocephalus that 90% of cases do.

[selmaS]

   Glad u got answers, sorry it is yet another issue u will have to deal with, I know this was considered for me at one point....can I ask how they came to the DX?

[courtneybreaud24]

So I got my results from my nuersosurgeon its not chiar, thats the good news the bad is I do have a rare brain disorder called Dany Walker Syndrome!!

[selmaS]

  Hi...first this is a blurry pic....so it is hard to really say, plus we r not Drs just going by how the Drs explained ours to us....do u have a copy of the MRI on Disk? IF so upload a few pics...u may want to remove some of ur personal info as this is a public forum...ne one that googles ur name will find ur MRI.....

Sorry I wish I could tell u more.

[courtneybreaud24]

Does my MRI say anything?

[courtneybreaud24]

My MRI is today, so today we find out if I have chiari or not.

[selmaS]

  I am glad u got ur mom to agree, and I hope u have a NS that can give u a dx and get u to feeling better soon.

  Have a Merry Christmas <3

[courtneybreaud24]

Well I am finally going see a nuerosurgon to do a mri, it took long but finally was able to convince my mom I need to get this checked out, its not normal to have headaches everyday or severe neck pain that hurts when you move it.

[selmaS]

  SO it is a deff possibility for u to have Marfans.....hmmmm well all I can say is good luck on the dx and I hope u get one soon....

Do keep us posted here on what u find out.

[courtneybreaud24]

No I am tall and hypermobile with long arms and legs.

[selmaS]

  Do u have hyper mobile joints? I know this was considered  or at less on the table when I was being dx'd...but I am short...I do not "fit" the typical Marfan criteria....

  I hope u get deff answers soon....

Keep us posted <3

[courtneybreaud24]

I did got to the geneticist to see what kind of eds it was, but was told he don't think its eds, but more marfan syndrome they will take a chromosome test to see.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask what testing ur geneticist did? Was it to see what type of EDS u have, as it sounds  like that may be a possibility.....

EDS can cause cerviocranial instability and cause HA's...so u may not have Chiari....but until u can get more testing u will not know for sure...I would press the geneticist for answers to the testing u have had and go from there...just having the flexion and extention  xrays  may lead to a MRI of the cervical spine, and if u have Chiari it may show on that,.