HiHi my name is Jennifer... 39 year old mom of 3... I was just diagnosed in April... with an 8mm chiari malformation .. after years of non diagnosis.. after 2 years of headaches... but if i look back at my history it really started in 2000 with being diagnosed with "fibromyalgia" which i never belived i had anyway and refused to be treated for ( numbess was always in the right side of my arm)... I could go on forever and write a book with all the problems so I won't bore you all.. with the many test... from what I have read on here.. you have all been thru the same bull crap I have... I can't belive in 2012 that the doctors are this stupid uneducated and uncaring.. it really is minblowing that a nueroligist making 200.00 a patient visit doesn't give a crap about their patients. I am on my third neuoligist. Who I actually have to go back to on wed. I am dreading it. He still is telling me that the Chiari is not what is causing my problems. I was admitted in april for 4 days for migraine treatment. that did take away the migraine. but did not take away the pressure. he has no explination for that. and he says the numbness that has taken up the entire right side of my body rom my head down my neck into my shoulder down my arm into my body and down my leg is because of the migraine.. ya okay doc.. its been like that since october... I sent my files to the chiari institute. they accepted me as a patient. but my appointment isnt until the 25th of this month. my only concern with that is, they seemed to have changed their treatments. their website says they do 2 days of testing, but when they called me she said, they don't do that anymore, if they look over your files and think you are a candidate for surgery, then they schedule you for a consultation. which i dont know kinda bothers me. I'd rather have more testing done to be sure I need surgery. I mean I know I'm physically in hell, and at times there is nothing more i'd love to do than jam a knife into my own skull and relieve the pressure myself, but noone has done any tests on me other than an mri.. so i'd kinda like for a cine mri to be done ... plus I have had 2 appointments with 2 different neurosurgeons out here and they both told me they wouldnt operate on me because in their opinion it wasnt sigificant enough. so what does that mean? They called it minimal to be exact. From what I read 8mm isn;t minimal... sooo I guess im wondering why they wont do the surgery but the chiari place will... idk...
Sooo Im not even sure what the point of my post is.. i think i just needed to get this out... i probably don't even make any sense...
If anyone knows of a good neurologist in the philadelphia/allentown area please let me know....
and from what i have read with people who have had the surgery it seems like they have had more problems than have benefitted or am i just reading the horror stories? I am soo terrified.. ahhhh
First I just want to give you a great big cyber hug. I can completely relate to everything you are saying. Sometimes the frustration is worse than the symptoms. You just want to shake doctors and tell them there is no way we are making this up. No one would want to live with the effects of Chiari given the choice. I too was told I had Fibromialgia for years....but only on the left side of my body!! I asked my nl one day "What does fibromialgia have against the left side of my body?" I don't know why more nl don't look into the research and take our complaints/symptoms more seriously. For years I tried to give my nl supporting information and point her towards the research. It was literally tossed back at me. Good doctors are few and far between and when we find a good one we are very lucky. It's a sad but true fact. It's abolutely ridiculous that a condition that puts incredible pressure on our brain, brain stem and spine wouldn't be causing our symptoms. I fired my nl and went to see a half a dozen until I finally gave up for awhile on finding one. I found a great PCP that takes my symptoms seriously and is learning about Chiari so she can try and help me. I feel incredibly blessed and grateful for finding her. I just found out her husband is a nl so I may give him a try if it's not a conflict for her. Unfortunately surgery is not a cure. Some of us do better afterwards than others. Surgery helped make my headaches alot better and decreased the pressure in my head so for that I am grateful. I am now looking at having revision surgery because of scar tissue build up. Just know we are all here for you and anytime you want to vent this is a safe place to do it. I will say a prayer for you Jennifer. I pray that you find someone to help you and I pray that you start to feel better soon.
We all know your anger and frustration. For me everything happened quite fast, I was diagnosed in Sept. 2011 had a neurosurgeon and neurologist begin working with me. The neurosurgeon wasn't going to jump into a surgery until after the neurologist took a look at everything to mostly confirm what he was thinking but would not say. For the first time in 20 years I finally felt like I had the answer. See I too was diagnosed with fibro and any new symptom was always passed off as the fibro. I never believed I had it but after about 8 years accepted the diagnosis.
Obviously we all know with chronic pain comes depression and many other problems. I'm at 22mm and I'm not the text book example of what they consider most CHiarians symptoms to be. However I believe having them work together to really come to the conclusion was a blessing and I'm thankful with all the testing they didn't jump right into surgery.
I'm 6 months post-opt and my headaches are no longer a part of daily life. Don't get me wrong I have headaches still but the key is they do go away. I still have pain from surgery and I'm guessing it is from my age. I'm not a 20 year old who heals at a faster rate. I'm a busy mother of 5 and somedays I'm struggling to get through, however again it is nothing like before. I do have more energy, I do not live in a fog. I still have visual changes and suffer from short term memory loss. I have to be careful if I kneal down and get back up.
It's okay to ask for the testing and ask alot of questions. You are your own advocate for your health and I believe you know yourself well enough to know what is right for you. I had a wonderful surgeon and he did everything right. You will know and have peace with the direction you need to go in. I pray for your peace and guidance for this situation.