I am a 31 year old stay at her me mom and wife, I have 10 & 6 year olds. I was diagnosed in August of 2017 with Chiari type 1, I am only at 6 mm I know it is small but has cause me major issues. I know exactly when pressure is changing, I am nauseous a lot, headache is constant, and I have tingling and numbness in my arms and sometimes my legs. When it started the hospital I went to thought I was having a stroke. With all of that being said even after being diagnosed I have tried doctors in my area and I have been told that I am only imagining things. I told that doctor why would I put myself through this everyday for mental issues!?! I told her there are many days I can’t even get out of bed and get my kids ready for school, or anything because it is so bad and she said well that sucks! So my family and I are moving to the Houston area so I can get the care that I need and be with doctors that can help me and that understands Chiari at least a little more than the ones in the Amarillo doctors do. So does anyone have any advice for me?
My advice is get the help you need! You are doing the right thing! You are you best advocate!!! Never forget that! I have the same and more symptoms and have had to speak up and out for my self and am seeing a neurosurgeon soon… But I too had to start on a path where I was told I was crazy and that the pain was unrelated ect. So hold your head high and keep getting answers.
You aren’t alone! I was hospitalized with numbness, tingling and loss of mobility in my legs and arms. The first neurologist I saw was great. He admitted me and sent me for a bunch of tests (including an MRI that eventually diagnosed the Chiari and Syrinx). He even reassured me (before knowing of the Chiari) that I was legitimately expericing what I was.
However, on the weekend it was a different neurologist and the first thing she asked me was whether I was anxious and if my symptoms were anxiety related. It’s so discouraging and I feel for you!
I was discharged by her and she didn’t even mention the Chiari and syrinx to me…I read it in my discharge summary. Thankfully I’ve got a wonderful family doctor. I’ve developed more symptoms since hospital (likely because of having a lumbar puncture) and he says the first person to say it’s all related to my Chiari.
I live in Canada so can’t recommend a doctor for you to see but what I can say is that’s it’s important to find even on doctor who believes you…it makes such a difference. I’m confident one is out there for you, so keep looking and best of luck!
Thank y’all so much! I is very discouraging when a doctor tells you that you are just imagining things. But I will keep moving forward because I don’t want to be like this for forever! I also had a lumbar puncture before I was diagnosed and now I know that is a big no no! I can not wait to get to Houston where I can get a NS that will understand me and know I am not crazy! Thank y’all both for the encouragement, it does help to know you are not alone and that there are people that have gone or are going through the exact same thing!
I hope your move comes soon and you get the help you need from a great NS. If you need the name of a great NS let me know I just had the decompression surgery here in Houston 3 weeks ago. Best of luck you are not alone. Most of all your not crazy, your symptoms are very real. Don’t ever let them dismiss you, your symptoms or your emotional health. You have to be your own advocate.
Thank you JenA! Yes I could use some names! I want the best! And I don’t know any doctors in Houston! I am moving in May so it is getting closer, my husband got a transfer with his company once they heard was going on with me they jumped on it and said yes we will make the move happen! So he leaves in April but I am staying to let my kids finish school here since they will only have like 3 weeks left by the time my husband leaves.