I have finally visited the Neurologist! I don't know how long it has been and I don't know how I have ended up with this guy. But he knows more about Chiari than any other doctor I have seen beside the 2nd neurosurgeon. I LOVE this man!! I saw him in November and he ordered new MRIs and blood tests. This man talked to me face to face for over and HOUR!! Who does that??? Dr. Orr! Crazy thing is he specializes in Alzheimer's, but this man knows so much about Chiari it is CRAZY!! He explained so much to me that no one ever had. What the spinal fluid is doing, (or not doing), why grunting is so bad for me, I mean all this stuff that would have been super helpful when I was diagnosed 5 years ago. (At least I figured out it wouldn't be wise for me to have anymore children!)
Now onto when I went back to him yesterday to talk about my new scans. I haven't changed!!!! HURRAY!! My chiari herniation is still 7mm, he said that as of right now he sees no reason for surgery since my symptoms are still ones that I feel are livable. He did put me on another medication for pain, it is supposed to reduce pain and spinal pressure Indocin I am his test subject. I told him when I lay down on my stomach I feel like I am drowning. Not literally I can't breath drowning but that my head is filling with fluid and I feel like my brain, face, is sloshing around and I have to hurry and turn over. He said how long has this been happening? I told him years. Just something I have learned to live with. He said that was another spinal fluid pressure issue. See I love this man. All the other doctors have just blown me off!!
He also had a bunch of stuff tested in my blood, you know how much of my rx was in my system but I had told him I was super exhausted all the time. Come to find out my iron was an 18. I am now starting iron pills to see if that helps. I will have it retested in 3 months. So that was my visit and have I said I LOVE THIS GUY???
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Hi! I just found out about two month ago that I have Chiari type 1. Things have been insane. I have an 8mm almost 9 herniation. I have 2 boys ages 4 and 1. Life is crazy and we are considering surgery because the thought of living on these meds the rest of my life if numbing. It makes me sick. I hope you are feeling better and that you are doing well. have loved reading your blog and I can relate to your feelings and your thoughts. Thank you for your time and your inspiration. God Bless!
Hi and thanks for reading my blog! So sorry to hear you have entered the unknown world of chiari! If you read back in my past posts you see I am very torn with the thought of surgery. The idea is being on meds for the rest of my life and potentially killing my organs really bothers me, but the idea of having a surgery that may not work and being out of commission for my kids is what keeps me on the meds for right now. Until either my symptoms are so unbearable or my kids are out of the house my organ damage is the best option for me. Good luck to you on your chiari journey!
I love your blog! Why did the doctor say that it wouldn't be good for you to have more kids. Just curious, I have 3 kids and my symptoms started when I was pregnant with my 3rd, he will be 5 in March. I have a lot of dizziness and weird feelings in my head and of course headaches. I just stopped going to the dr. because none of them can help me and surgery isn't an option for me at this point.
TinaAnn-
I was never told not to have anymore kids exactly but I could tell that with the way my symptoms presented that having more kids would just not be the best for me. And with this new dr he said grunting and pushing can make things worse. Also I realized a lot of what "woke up" my symptoms was the epidural and I knew for a fact I could not go through childbirth naturally!!
Hi I just went into the emergency room on the 31st thinking I had a bad sinus infection. Well they did a CT scan and said I may have Arnold Chiari. I still have to go into a neurologist to have a diagnosis but I have problems smiling too long and contant sinus problems. I and 31 years old with 2 boys 5 year old and 19 month old. I have been a nervous reck since the ER visit. Im so afraid about the future of this.
Wow! You mean I am not alone? Two years ago I was suffering fromheadaches, tingling, vibrations, etc... the dr tested me for MS, as well as other dx. but when I was diagnosed with Chiari, I went to a neurologist who blatently told me the drop wasn't consistant with a person who needed surgery, there were no herniations and I should just get injections for headaches and go home. Now two years later, I live with MORE headaches, more drugs, more sensetivity to light, new sysmtoms live weakness in lifting over my head (which I do daily) and now typing is an issue. (it's like some days I can't remember where the keys are on the keyboard) Recent blood shows my iron is really high!!! I have always been borderline anemic . CT last thursday showed the Chiari again, So monday I go for the MRI to look for changes. I can only say I am not in love with the idea of the drop changing but I am okay with finding someone to help with the symptoms. If you guys can give me an idea as to what your stressors are, I would appreciate it. I am trying to pinpoint what is a Chiari symptom and what is just being 41.
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