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a question to the group
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AnnieNpain45 posted:
Does anyone else have fibromyalgia and ACM?
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missist responded:
hi.. what is ACM.
 
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missist replied to missist's response:
oh.. chiari malformation, right?

good question I bet most folks would not even know. If some doctor along the line doesn't investigate the possibility.
I've had MRI of that area to see what was going on with my neck--but all I found out was what was going on with my neck. If anything else was wrong-- I would probably have had to get another MRI-- the way things are these days-- if you don't ask the x-act right question-- you are out of luck.
 
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BetteK responded:
Annie,

You do know that there are some docs out there that say they can cure your FM by fixing your Chiari Malformation, don't you?
It's when the spine high in your neck is pressing on the spinal chord. It is correctable surgically.

Whether it can cure FM or not is another question. SOME people with FM have this problem. But no one (not even the docs that swear by the operation) can claim it would make all of us suddenly be FM free.

It's one of those gray areas. No one is claiming these surgeons are quacks, but not too many neuros or rheumys are sending their patients in for the surgery either.

BetteK

But wouldn't it be nice?
 
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AnnieNpain45 replied to missist's response:
I have had decompression surgery, all it did was to end almost all of my worst headaches-which I was taking 30 to 45 excedrin per day for.
As far as the other symptoms, I.e.-nausea, joint pain, fibromyalgia, exhaustion, burning and tingling in my hands& feet, etc- those symptoms have actually worsened over the last 12 years post surgery.
My insurance company won't authorize an MRI because they want proof that I have a Chiari.
The surgery is a band-aid, not a cure, but because drs keep Saying it's a cure, it causes patients like me problems.
There is No Cure for ACM=Arnold Chiari Malformation.
 
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AnnieNpain45 replied to BetteK's response:
There is No Cure for ACM

Any doc who says that there is a cure for a chiari I being disingenuous.

Prior to being dianosed at age 33, I'd been tested for every possible problem that the drs I had to yell at to even get them to listen, could think of.
I've had 7 separate emg tests, 10 eegs, x-rays, everything except an MRI.

Once I finally had the MRI I was lucky to have a connection at University of PA hospital and medical center, had I not had a brother working there in nuero-radiology, I'd have had another 18 to 26 month wait to be seen by just a neurologist.
Our medical system is a mess. Not that anyone in our government has or will in the future, come up with a decent plan for fixing it...

As a Chiari patient I'm supposed to have an MRI at least every year because the shift of my brain stem could very well happen again.
The ins won't approve it because I've been "cured" already.
 
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AnnieNpain45 replied to missist's response:
ACM stands for Arnold Chiari Malformation, which is usually a shift in the brain stem pushing it out of the skull and causing it to protrude into the spinal cord area, where the irritation of the extra junk in that area causes cerebellar tonsils to form, which also stops the exchange of spinal and cranial fluid, causing cranial fluid to become trapped in the area of the spinal cord.
This fluid is called a residual syrinx post surgery, and I've been told by drs and other zipper-heads (that's what we ACM patients call each other-because of the scar we each have from th top of our heads down to or shoulders) that the syrinxes are never That bad, but it's different for everyone and mine is big enough to make the few neuro-docs I've seen suck in air or swear upon seeing my past MRIs.
If no one you know well has ACM, then you should thank the higher powers in your life for that blessing.
It is part of spina bifida.
www.asap.org is a good site if you're curious about ACM.
Also www.conquerchiari.org
Just remember that some of the pictures only show the simplified symptoms.
My brain stem had slipped 26 centimeters out of my skull...
 
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AnnieNpain45 responded:
By the way, I know I sound grumpy, had a Really bad night in many months of bad nights, but Thanks very much for responding to my question.
If the fibromyalgia would just ease up, I could live with the rest.
 
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AnnieNpain45 responded:
Thanks to you both for responding.
 
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missist replied to AnnieNpain45's response:
Hey Annie-- don't worry about being grumpy. I've been pretty upset by the medical system myself lately. Its not unsual when you have something weird that doctors don't like (aka don't understand)

I will add you to my prayer list.
God Bless!
Mary
 
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AnnieNpain45 replied to missist's response:
Mary,
Thank you so much.
It's been rough lately.
 
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katmandulou responded:
Anyone who claims they can "cure" anything that nobody else can is being disingenuous.
 
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AnnieNpain45 replied to katmandulou's response:
This is true...
 
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booch007 responded:
I don't where you live but the main specialist for Chiari's is Dr. Mallerodt (sp?) in Brooklyn at LI College Hospital (called LICH). My girlfriend who was diagnosed with MS and then the workup relvealed a chiari as well......found this with much research. We thought we would travel to California, but we just had to cross the Brooklyn bridge.

His statements led me to believe that surgery is the last thing he would do. Cracking open the Fossa Ovale (the hole in your skull) and enlarging it was not to be taken lightly. He didn't give us a cure...but she had MS in the mix too.

She dealt with alot of it with Neurontin. We did meet another RN who also had this and had the surgery with quite a bit of benefit. Still not able to work though.

My friend worked up to the point she was diagnosed with Pancreatic Cancer and that was her demise.

This was my BFF for life....we had envisioned teaching painting in the nursing home together..... Didn't happen.

All the docs know there is no cure for most, just better. We aim for symptom relief. be careful in what you change in your body and be educated to move forward. There are times you have to take chances though and you pray that it was a good move.

Good luck in this...NancyB

P.S: Our symptoms weren't to similar to confuse her with me. Though she would say..I bet you have MS and no one has found it yet.....(I don't have MS, I have Chronic Myofascial Pain with trigger points). THAT is what is wrong with me.....

Good luck.
 
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AnnieNpain45 replied to booch007's response:
I am so terribly sorry for the losses you have had in your life and for your own pain.
My husband is just starting to admit to having the same trigger points which are caused by fibromyalgia. He has degenerative disc disease, a small "gift" from the wonderful man who Was his own father. His father's spine was so damaged and he was in So much pain that the drs in Florida completely missed bone cancer, which moved on and became kidney, liver, lung, pancreatic and finally brain cancers... He held out for 5 months post diagnosis just to get to see as many of his 3 sons, and at the time 7 grand children, plus as many of the now 27 great and great-great grand children that he could, once we got him flown back to P.A. then, he just fell asleep and didn't have pain anymore.
I've been told for 11 years that there is no "medical" reason for my ability to walk or even to be alive but while my own child, who's 23yrs, still needs me, I'll just have to keep going...
Blessings to you and to all those who are important in your life and thank you so much for sharing Your own life with me.

Anne

P.S. My daughter, Stephani, will be graduating from college as a nurse in December, 10 days after her birthday. We're poor since I haven't been able to work the 4 to 5 jobs that I used to, so it's taken her a little longer, but she's stubborn and determined to succeed-like both of her parents


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