A few years ago I started having weird symptoms that continued to get worse. Weakness in arms and legs, tingling, bladder and bowel problems and worst of all I became the biggest cluts ever. After seeing 2 different doctors 6 times I put my foot down 2 weeks ago and told the Dr. if he didn't fix me he needed to give me something for my craziness because I couldn't live like this anymore. I had made him a list of more than 40 symptoms that I had experienced either on a regular basis or any time in the past 2 years even if they may not be related. One and only one symptom caught his eye, difficulty swallowing. Of all the weird stuff I had going on that made him notice? Anyway he felt it was time to look at MS as a real possibility. Off I went for an MRI. The MRI showed no lesions so this was promising but then he began to tell me about an anatomical problem with my brain. He said he had never seen this before but according to the report I have Chiari, he said not to worry it was only a 1 out of 4 and 1 is the most mild and my intrusion is only 1cm so that's not real bad. He is sending me back for another MRI and will refer me to a Neurosurgeon.
Ok, long story so sorry, but here I am now less than 24 hours after diagnosis and of course doing research on this mystery Chiari. From what I have read 1cm is a lot and with all the symptoms I have had makes it is even worse. Where I go from here is unclear. Any insight on what to expect would be great or any pointers how to proceed would be helpful as well. I have another "dedicated" MRI next Monday. The doc said he was going to send me to a Neurosurgeon but as far as I can tell there aren’t any specialists here in my area. (Des Moines, IA) Any and all info is welcome!
I am pretty sure its safe to say that when the majority of us received our diagnosis we were shocked, confused and more than anything lost. It's all part of the blessings of having a rare condition. Lori is right another MRI and referral are definitely the next steps. Regardless of the size, Chiari can and does cause problems. They also need to ensure that your flow of CSF (cerebro-spinal fluid) is adequate.
Remember, you can always come here and pose questions. We have a great community of support here.
Good Luck and best wishes! Let us know what you find out.
The worst part of Chiari is the unknown. I think many of us on this site were told we had Chiari and then nothing?? No information or direction. My advice is to read through the discussions posted- so much advice and guidance from your peers. It helped me stop feeling so alone. My best too you!
well you are on the right track now, if possible see if the MRI is with dye, not sure what the dye does but 4 all 3 of my MRI's i had the dye. it blows my mind on how CM effects us all in so many different ways. i also have a swallowing problem, among many others. my left eye became stupid, and after seeing a opptomlatrist sum1 else a NS and 3 MRI's later i also was told i have CM.
just remember your not alone in this we have all been were you are and know exactly how you feel, have any questions or just want 2 vent this is the site 2 be at.
I too just wanted to tell you that I know how you are feeling.. I'm still PO'd at the doctors that I have had in my medical life over these years.. Anyways, I wanted to tell you that I have a friend that sees Dr Menezes in Iowa City, She swears by him and he has even published some articles on chiari. I don't know how far away that is from you though, but I wanted to tell you about him so if he is within an "ok" driving distance for you and in your Insurance network you could ask for a referral..
And like everyone else says, YOU ARE NOT ALONE!! We are all in this together.. Some are further along in there journey with chiari while others like you are only starting it and then there are people like me who are right smack dab in the middle of it! Just take a deep breath and roll with the punches!
Just want to welcome you and let you know you're in the right place! Remain a strong self advocate and if something doesn't feel right, whether it be symptoms or drs or not enough explanation, speak up! And the people here are always so wonderful about helping explain the hundreds of questions we all have and providing the support we all need.
Welcome to our family, we will give you much love, comfort and support. Please do not ever ever be sorry.
I had all the same symptoms as you ad no-one listened and I was also told 1 was not bad…that is crap. It does not matter wether it is 0 or 20 if you are symptomatic then it needs to be addressed.
Thank you everyone for the support and encouragement. The past 2 days have been awful; I have trigeminal neuralgia that has come back with a vengeance. I have had little to no sleep and my exhaustion level is through the roof.
@Luvmy2grls - Thank you for the input on Dr. Menezes he seems to be the ONLY CM specialist in the entire state. Glad to know your friend has had a positive experience with him.
@ Chris - My MRIs have been with contrast. I had a horrible burning pain in my hand where they injected me, still can't figure that out!
Thanks again everyone for the replies!! It is great to know there are others that understand what I am going through!