I have way more symtoms:
cold hands and feet
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Intolerance to bright light / difficulty adjusting to light change
Difficulty negotiating steps
Swaying
Intolerance to loud / confusing sounds
Drooling
Sinus / mucous problems
sensitive skin and easy bruising
I can't tell you if you have Chari or not, but want to let you know I can relate to the feeling of your flustrations of not getting the answers that you what. I acturally told the PCP that I wanted my MRI because everytime I went to a different Dr. they would find something wrong, but never was dx'd with Chari for another 2 yrs. I pray that you don't have to go through all this flustration. I suggest you call and see your PCP and go talk to them and get the Mri and then find out if you have Chari. I am hoping the best for you and for answers. This is the hardest part is finding the right Dr. and answers.
Linda :)
well I read that having a connective tissue disorder, chiari is a possibility because of the faulty collagen. I read a lot of people have both, another one is dysautonomia and I am being tested for that as well.
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,.
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.
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
No I am tall and hypermobile with long arms and legs.
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.
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.
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
My MRI is today, so today we find out if I have chiari or not.
Does my MRI say anything?
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.
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!!
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?
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.
Is a treatment plan available to u and in place?
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.
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
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.
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.
I will ask the doctor what we will do now, I will keep you posted on what happens.
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.