Hello all. I’ve been on the road to diagnosis for a while now (had weird symptoms all my life apparently but never put them together) but things finally started getting bad in January of this year to where I’ve actively begun searching for an answer. Finally after many specialists telling me that everything of fine I get to a neurologist. While he thinks the herniation (4-5mm) is incidental he has been sending me for MRIs to look for a syrinx. I’ve found a neurosurgeon that I am going to ask him to refer me to but in the mean time need some advice on how to tell my neurologist that I think the herniation is not incidental and that after finally searching on my own I am seeing every single symptom I’ve had recently and have been having for many years explained with this chiari. I’m tired of medications that don’t work or make things worse and exploring other options when I vessel I know exactly what this is. Should I just ask for the referral to an Ns and go from there? Also another question… I am having continued problems working. Was a successful hairdresser and now a gas station clerk. Missing more and more days… Are there any options that anyone knows of for unemployment? I’ve never been in this situation and my job doesn’t have short term disability which is what I used when I had gallbladder issues and then removal surgery. Any advice helps as I know that you guys understand what I’m going through!!!
Hi Pamela. My name is Tiffany. I was diagnosed with CM Feb of this year. I went to one neurologist and he basically said that the 6 to 7mm decending wasnt enough to cause all of my symptoms. I have been dealing with this since i was 16. Ive always had really bad head aches and ive passed out a couple times. Which i had seizures when i did. They could never find out why i had the seizures. They just said it was because i hit my head. Which now i know chiari can cause passing out. So after getting no where with the first neurologist i went back to my primary and she referred me to a head ache doc. This was back in march and i called to schedule and i couldnt get in until Aug 20th. Well i waited a few months and my symptoms are getting worse. So i found the mayfeild clinic and asked my primary to send them a referral and she did. I seen him on july 23 and i had a CINE MRI before hand to check the spinal fluid flow and for any build up from it. He told me that there is no physical therapy that will help me. That surgery would be my best option because of all my symptoms. If i were you i would ask for the referral and go from there. Thats what i did and i got someone that understands me. As far as short term disability im not sure about that. I was wondering the same thing because im self employed. I did read that i could get it but i dont know if this surgery would qualify. So im going to call them prob thursday. By the way im getting surgery in the next few months.
Hi Pamela my name is Phaedra and I completely understand what you are going through. I've so far seen 2 neurosurgeons and 2 neurologists. Out of the 4 only one has been an actual chiari specialist, who recommended surgery within the first 5 minutes I was with him. Before he even makes appointments he reviews your records so it doesn't waste anyone's time or money. The other 3 have no explanation for anything. My PCP doesn't think the chiari has any thing to do with anything. So I have taken things into my own hands and found another specialist in chiari.
Take matters into your own hands. You MUST advocate for yourself!!!
Good luck and keep us posted.