Wow…I went to my nl appointment today she didn’t have my MRI (her office hadn’t gotten it in the last two weeks) said but “assured” me that my headaches,neck pain, numbness, vision loss, memory loss, disorientation, loss of words, has NOTHING to do with my Chiari or the syrinx. She gave me two MORE meds and a spine MRI (which I’ll take) oh and another work up on labs because she said I haven’t been tested on my thyroid (even though I told her yes three doctors ago my thyroid was fine) when I questioned her she asked me “how far did you get in your education Mrs. cook?”… No follow up,appointment. So I have to schedule my MRI and. Will be doing that because I’ve only had the brain MRI where they found a Chairi malformation with a syrinx. Then I’m going to take my mri’s and find another doctor… Any suggestions? Should I just start contacting ns, or have the dr. Who is helping me. It was the worst experience of my life, I cannot tell you how I felt, I’m in horrible pain and I could not remember the day of the week and she wouldn’t help me. What do I do. I have heard ya’ll’s horror stories and just thought it wasn’t going to happen to me because until now I have been so blessed with my doctors. Help p,ease, I need yalls experience
Brandi
She also told me that my symptoms are not related to the chiari and syrinx because unless its a certain size it’s not even chiari malformation. First of all she doesn’t have my size because she doesn’t have my MRI and she said I need to see her neuro psychologist and maybe have a spinal tap, but my symptoms are not related to my chiari with syrinx…
Brandi-
So sorry to hear about your NL experience. I know how frustrating and disheartening it can be to have someone who’s supposed to be an expert tell you that what you are experiencing has nothing to do with this thing in your brain. It feels like they are telling us that we’re making it up and we’re crazy, even though there’s proof on the MRI and on the reports! Like we could possibly make up these symptoms!
I had the exact same experience with a NS on Tuesday. I have 2 MRI’s(first one showing a 6mm and the second one shows an 8mm) and the guy tells me that if he had read the report he would have called mine “normal”. REALLY! I have the same symptoms as you, haven’t slept laying down in almost two years, and can barely function most days. When I went into their office I walked into the door jam, lol. But when the Dr. talked to me he said that None of my symptoms had anything to do with a Chiari and that I simply have headaches and recommended I see a headache specialist. He even had the audacity to compare my pain with the headaches he gets from wearing a tie everyday. He said it causes him so much pain he has to take an Advil and go to bed everyday, so he can Relate to my pain!
Anyway, I’m sorry I’m venting, but my point is that I get where your coming from. When I left my appointment the other day, I wanted to cry. But instead I reached out to everyone here and it helped to boost my spirits. Sometimes it helps to just vent. Emmaline is right, we have to pick ourselves up and keep trying. We just need to find the right Dr’s. I know they are out there, it’s just a matter of getting to them.
Hang in there! Just know that your not alone. I wish you the best.
I'm so sorry! I just came in to share my story as well! Last night was interesting! It ended with him telling me that people with Chiari do not get headaches and I've created that in my mind and I'm suffering from PTSD. Prior to that he casually told me my tumor grew back on my right frontal lobe and I should not even worry about it, its not a big deal yet!
He was mid sentence when I stood up and said "I'M DONE TALKING TO YOU" and I walked out of his office and didn't look back.
Okay we ARE all miserable but we are together here!!! Heres what going to happen… We are going to do… What states are y’all in? We are fixing to start researching together. Then we are going to gather our medical records write an intelligent letter of symptoms and then at least I am fixing to hassle everyone in the country who is familiar with this. I need help and there is a doctor out ther who is willing to help I just haven’t found him yet. Surgery may not be what I need but I will hear what I need from an expert not someone who doesn’t know doo doo about chiari. I’ve already scheduled my MRI for Monday and then I’m going to get my results and contact two doctors here in Texas. It’s time to burn up the roads, I have to get better and function. I know you all feel the same. So maybe we can work together. I am going to contact my dr. That’s been helping me because I did take the meds last night that the nl gave me and today I feel very lethargic and drugged. I have things I have to do I can’t be walking around in pain AND super drugged. I’m so proud of all of you who keep fighting, it’s hard and it takes strength we never knew we had to get though every day. Y’all are warriors and I’m very proud to be part of yall. Thanks for all the support
Sorry to hear about your bad experience. I've been there and done that...twice. I have decided NL just aren't worth the time of day...go straight to a NS and find one who treats a lot of chiari patients.