Here goes, I have been reading everything here for days but am still lost for answers. My daughter was diagnosed with Chiari at 7 (she is 13 now) there have been no follow ups for her as my doctor didn't know what it was. I was told around the same time that I had Rheumatoid Arthritis due to the severe pain in my back and neck, again no follow up from my doctor. I have over the years had several episodes of Sinus Infections, Vertigo, Anxiety Attacks and problems where I feel my breathing has stopped overnight.
I have severe pain everyday in the bones on the sole of my feet and also my elbow bones, I have no bladder contol and my headaches and dizzy spells are driving me insane. I finally went to my doctor to tell him I could no longer tolerate the pain in my neck everyday and he sent me to a neurosurgeon who has recommended that I get tested for Chiari. Is this test a waste of hospital time. I feel that the doctor thinks I am making up all my symptoms and I might be a hypochondriac as I am a single mother and he blames EVERYTHING on stress. I feel sore and sorry for myself.
I am actually going to a new doctor tomorrow as my own doctor has totally ignored me and my daughter for years. I have bought the Conquer Chiari book which I am trying to concentrate on and read. I have a very long list of little things and big things for the new doctor tomorrow in case I get a headache and wont remember what to tell her. I went to do the MRI on Saturday but I am so claustophobic i wouldn't let them do it, so what to do next I don't know. I find it hard to breathe and gag a lot so putting my head in an enclosed space (even though they very nicely gave me a wider machine) seemed a little impossible. I have asked my surgeon could I be totally sedated to have the test and he said it could take months, so that leaves me painfully in limbo. GERALDINE
Emmaline said:
Geraldine, the only way for sure to find out is to have the MRI. It will not be a waste of time, and finding out will only validate what you already knew, or give them another direction to look in.
Hang in there, educate your self, and you are NOT a hypochondriac! We know best how we feel, don't let anyone minimize what you that. Stick up for yourself.
Thank you for replying, as you can see my problem is having the test, and PLEASE tell me what other isues am I up against here, this is all so complicated and soul destroying. I hated dealing with having Rheumatoid Arthritis and being in constant pain but I thought there might be help with this, but Chiari seems harder to deal with.
Geraldine
Abby said:
Geraldine,
Finding out what has been wrong with you, you will find actually makes you relieved to actually have a name to go along with what your symptoms are. Emmaline, gave you some very good advice, educate yourself on Chiari. If your having the symptoms you described, you may have some additional issues that go along with Chiari. Until you get the MRI and maybe some other tests, you will not know. Glad your here with us.
When you wrote "Soul Destroying" it stopped me in my thoughts. Chiari is very complicated and challenging. You definitely need to get a MRI of the C Spine and Brain. Do you have a Neurologist or Neurosurgeon? Not that surgery cures CM. It just stops the progression. The symptoms you have described are CM symptoms. You may have associated disorders like EDS, but you really need to get those MRI's first. Please keep in touch and let us know how you are doing. My Soul has been Destroyed as well as many others. I truly understand.