So today I start my continued journey in the wild world of Arnold Chiari Malformation Type 1 or ACM / CM. I will begin with stating I am not a doctor but have no doubt read more then most of the doctors I have wasted co pays on over the past 35 months. I still do not have the Medical Certificate hanging on my wall, so bare in mind these are MY opinions with some facts / definitions.
How many of us have heard/read the words "Incidental Findings" after we have had CT / MRI's done?These are not incidental, we came for medical explanation and help to a problem..... finding something is what we are looking for! Stop dismissing the signs and symptoms that can be seen on scans, PLEASE!
This may be another term you may hear a lot. I do not believe that any CM is Borderline. It is either there or not. Herniated or not. Either yes or no in black and white....No 2 brains will every be the same.This is fact. Do we have Borderline Cancer......NO. Do we ever have Borderline Strokes........NO. Why is it so different when we speak about Brain issues? Most everything can be labeled borderline........depression, migraines, ADD, insomnia, loss of memory. In fact these borderline symptoms are connected to CM. Giving further reason to deem the "Incidental Finding" as CM.
By now if you are HERE , you may have been told by your PCP, ER Dr. or NL that there was an Incidental Finding of Borderline CM. However "we" "I" feel you are suffering from Migraines and stress, soft tissue injury (whiplash), depression or yet the ever famous Chronic Pain Syndrome.....that's a biggy for some doctors! STOP them right there!!!! No I mean STOP them from speaking another word......... Ask this question?: How many patients have you succesfully treated with Incidental Findings of Borderline CM? You need to get a number of patients in YEARS, if they can not give you a quick firm responce, politely let the doctor know you are going to do a little research on this matter and you would like to get a referral to a specialist. Before you leave ask for a copy of the scans, I mean the hard copy's. You will need these. Never leave your films with anyone.
I was taught as a young child that if you learn something, you need to share this with others. Very important lesson my Grandmother spoke about all the time. Sharing is POWER. Boy do I miss her. She shared everything with everyone....flowers, food, clothing, the word of God.
Chiari is a rotten, nasty, unforgiving and robbing disease. We need to expose. It is like a lizard that changes colors and most times hard to spot in the world of medicine.
It is not one of the conditions that can be cured.....not yet! So no big payday in the medical, political or financial research arena. Only a handful of Doctors and Institutes that care. We must carry the torch, passing it from hand to hand........till we have reached ALL!
Contact me if you are in need of help
Here is my email if you need help in figuring out what to do...where to go.....for treatment of your Chiari.
POT: Postural Orthostatic Tachycardia Hyporeflexia: Lose of extremity reflexes Peripheral Neuropathy: Damage to nerves in legs/arms Small or Large Nerves EDS: Ehlers-Danlos Syndrome, A multi connective tissue/bone disorder. Syringomyelia: Fluid sac in the spinal canal
40ish happily married for 26 years to an angel (really couch potato :) ) Three grown children who are stable and happy. I have Arnold Chiari Malformation I. I am here to spread awareness, share support, and educate others on proper diagnosis and treatment. I wish to share with others my journey in hopes that it will shorten someone else's.
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