Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Brain & Nervous System
/ Arnold-Chiari Malformation Support Group

I FEEL LIKE I AM GOING CRAZY

Acr4886
Acr4886
I honestly at this point only have you guys. I am going through so much right now. i have this Chiari, I have a pituitary tumor, Anxiety, and Panic disorder. I am so tired of everything. Lately, I have been noticing a rather big problem with my memory. i forget everything. I repeat things to people and i am messing up at work. My Neurologist won't get me an MRi and I think I need that since it has been a while since I have checked my Chiari and Tumor. He wants blood work done that I actually got done two months ago again, so does my endocrinologist. I don't know if it is the meds for my Anxiety causing the memory loss, but i don't want to change meds unless I am for sure it is not the chiari or tumor. My speech is slurred from time to time and my husband makes up the excuse that it could be due to the fact that I am bilingual and I have to speak to languages at work. I have become super paranoid and the therapist says that I can not call my husband and tell him about everything that is going wrong at work because that is adding too much pressure on him too. So then who do I talk to? I am not going to sit with a co worker and say " HEY I AM GOING BONKERS" . So tired. SO confused, I feel So ALONE.
ROZIA
ROZIA
have you had surgery on your chiari ? If so then you need to see your Neurosurgeon. I think Neurologist are a waste of time. When you call for an appt just tell them you are having problems and its been a while for a check on tyour chiari and need a new MRI.
Acr4886
Acr4886
No I have not had surgery. My Neurologist thinks that I do not need any. My herniation last time I check was a 7mm. He says that there is no need for that. he just began feeding me pills like Topamax which i stopped taking, then an anti seizure med which I also stopped taking. he refuses to see me until I get more blood work done.
deleted_user
deleted_user
I am so you are going through this. You can vent here any time.

Please get a referral to a Chiari specialist. There are quite a few good ones referenced here and you find some additional choices with them. Since you are more than 5 mm, I am surprised your doctor has not referred you. Drugs are a great option if they work, but if they aren't working it might be time for plan B.

Some of your anxiety and memory could be Chiari based.

Take control of your medical treatment and get the referral you want and deserve. You can do this!!!
deleted_user
deleted_user
Oops, I forget the word "sorry"...see we all have forgetful moments....I blame mine on age.
deleted_user
deleted_user
I am so sorry to hear about all your problems. Please hang in there! I went to two neuro surgeons and a pain management specialist before I got the answers that I needed. I encourage you to see a Chiari specialist or at least one who has done some surgeries. (Mine is not a "specialist" but he has done about 30 surgeries and in Alaska, he is considered one of the best.)
Also, my herniation is 13, but considering that I have good cerebral spinal fluid flow I am not in need of surgery and we are monitering the symptoms, pain etc and I will be getting anual mri's.
Also, ALL my doctors are on the same page. If I have a chiari/pain related test with one, they forward results to all others. Yes, it may sound like overkill, but I requested it because frankly the Chiari scared the begeezes out of me and they all agreed to do it because I insisted (and whined abit).
Basically, my advice is don't be afraid to take charge of your diagnosis. It's your health, your body and your money!
My heart is with you!
I hope my post helps.
Lisa
deleted_user
deleted_user
ditto what ROZIA advised. Skip neurologist. Who are you consulting for your pituitary tumor or is anyone addressing that issue? What kind is it? RE: ACM Degree of herniation is not the surgical litmus. Any idea what activated your symptoms? The MRI has limited vision. Physicians have to go by symptoms and CSF flow. Do you have a pituitary clinic nearby? Might be a way to get the attention you need via that route. Best to you.
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