Death Experience Because Of Uncorrected Arnold Chirai Malformation

 I have had ACM my whole life and have been affected by it the same time.I had no idea I had this genetic malformation until over a year ago.Since then I have been trying to figure out how to get this fixed because the Neurologist that diagnosed me with it in the first place told me that all my symptoms were just a figment of my imagination and that Arnold Chiari Malformation was nothing to worry about.So I was crying in the hospital bed praying that my body would not abort my unborn baby on account of all the stress and pain my body was going through at the time(that's why I was admitted spontaneous abortion)in other words my body couldn't take the pain anymore so it was attacking my unborn baby.I had been on bed rest for the majority of my pregnancy because of my headaches and throwing up.Balance problems and severe pain in my shoulders and neck and head.I had had ENOUGH and so I was crying uncontrollably so the idiot doctor (I won't say his name)looked at me and asked me"Have you ever been diagnosed with a mental or psychiatric disorder?" I said "EXCUSE ME?" "why would you ask me that question?" he said "well mrs. I have never seen anyone act this was over a headache before"
    Man at that point I just wanted to leave and  go home and die.If it weren't for the health of my unborn baby I would have.Mind you this is the doctor that diagnosed me with Arnold Chiari Malformation in the first place. The whole time my PCP doctor was trying her best to figure out what was wrong with me.He believed me because she watched me go down hill for years.She was like family to me.The neurologist came up with Fibromialgia.That's the best he could do after checking me up and down and coming to the conclusion that "There were no medical reasons for my problems" that he could find.
The hopelessness that fills you soul at this point is over whelming and killer.I just hope that this new specialist knows exactly what people praise he does.Because if he can't help me I do not believe I will be here much longer.I have already died once because of a slow irregular heart beat caused from the ACM.I needed gallbladder surgery and I was in Pre-op and they gave me something to calm my nerves but it stopped my heart instead.I was calm alright.The doctor brought me back right in front of my husband whom never let go of my hand the whole experience and my mother,Who left scratch marks on the seat from holding on while I was being brought back with hands full of steroids.The  Anesthesiologist  said that in his 30+yr career he has never seen anyone react that way toward those medications,They called it an allergic reaction.I called it something that could have been avoided with proper care for my ACM.
  So as you can see I am not very hopeful but,as long as I stop wetting my own pants with out control.I think I will be fine again.Does anyone know what I am going through?If so how do you keep your spirits up? 
lilredhood27 lilredhood27
31-35, F
3 Responses Jul 17, 2010

I've been in and out of emergency for the past 3 months due to so many neurological symptoms and pain.finally my ER visit last week have me some input on what's going on.they gave me an MRI and they had it sent to Illinois since the neurologist here In Sioux Falls South Dakota like to sleep in.The doc came back and said everything was normal except that my cerebellum tonsils were low. I felt some relief to know what's going on but she acted like if it wasn't life threatening. Everyday I get a new symtom and feels worse.i changed my gP because the one before thought it was stupid for me to get MRI .and said I had high anxiety.when I met my new gP he read my MRI and said everything was normal? I don't get? The neuro in Chicago told the ER doc my cerebellum tonsils were low but they put in my report that is normal????!!im scared I think they don't want to deal with me.i can't sleep laying down and I'm having chest pain all the time! I finally get to see a neuro here tomorrow. If I get the same answer that it's "normal" I'm packing my bags and going to Illinois!

Chiari Malformations are very difficult to diagnosis and survive. I became ill in 2001 and after a long difficult journey was correctly diagnosed in 2005. At that point I was almost a quadriplegic & had emergency Chiari Decompression & a rebuilt C Spine. I would wish this on no one and feel so bad lilredhood27 has had to go through everything she has gone through on her Chiari journey. I would like to add one bit of information. Chiari Malformations have not been determined to be hereditary. There are two current studies, but there is not a genetic marker that has been found that proves a genetic link. We have several discussions about this on There definitely is families Chiari Malformations run in, but many Chiarians are the only member of their families that have this Rare Disorder. I will update when the studies are completed. I hope Lilredhood27 does better. I understand your hopelessness, but you are not alone. I saw 52 specialists and was told to see a psychiatrist by an experienced ENT that was clueless. It is hard to keep your spirits up. I do it by talking to others that truly understand. I was tired of pain, treatments, therapies and finally found a true support group that has become my family.

I do ;(