Aa
Just diagnosed with Arnold Charis Malformation
I am a 31yr old female and I have just been diagnosed with Charis,I was asymptomatic all the way up to my 25th year when I had a really bad accident at work which involved my head and a 20lb boat fiberglass buffer.Although looking back I had some issues before the accident which is why I think I fell in the first place my balance as I got older got worse.
After my accident I never really got better in fact I got a little better then I crashed downward and kept going with several symptoms hitting me all at once and almost losing my 3rd child.They put me on bed rest the entire pregnancy because my headache were so bad it caused my body so much stress from the pain that my body was rejecting the fetus.The first symptom was neck and shoulder pain and seeing lights when I closed my eyes when my head was hurting.The doctor diagnosed me with sever migraines and prescribed me meds for them,The meds never worked.I continued to get worse with vision problems and I would wake up in the morning to find that I could not use my hands to grip or feel anything,and my feet were in so much pain it was impossible to walk on them.The symptoms seemed to come and go never really having a steady tracking coarse,except for the pain ,so my doctor diagnosed me with fibromialgia.At one point the doctors thought I could possibly have an enlarged thyroid glad on account of I complained of not being able to swallow all the time.I have been told it could be rheumatoid arthritis and the tests came back negative.Finally the doctor had tested my head with an MRI about a year ago when I was having the very intense migraines during pregnancy and that's where he found the Charis malformation but at the time brushed it off as if it were nothing and said it could not be the cause of your problems and then asked me if I have ever been diagnosed with any type of mental disorders,when I said "no" and asked him "Why would you even ask me that question?" he then replied "Because I have never seen anybody react this way over a migraine headache before."
I was crying and in so much pain I was vomiting and no one could help me or answer any questions as to why I was so sick,to me I thought I was going to die before they could figure it out!
Well about 2 years later I am still suffering and that same doctor now admits that my headaches are caused from the Charis,so my question is:
1.)Can my other symptoms be caused by this Charis malformation?
2.)Can I be fixed?
3.)how?
4.)Where can I go to see someone who knows what they are doing so my life will be saved?
Did I mention I have a very slow heart beat and the cardiologist can figure out why?I have a perfectly healthy heart that just gave up ion me in pre-op when I had my gallbladder removed.They had to bring me back with steroids.I also can't remember things I feel like I and a90yr old Alzheimer.
If anyone can HELP me I would do ANYTHING because I do not believe that if this continues untreated that I will be alive to see my 35th birthday.From the bottom of my heart may God Bless you and Thank You so much just for reading my letter and if you can help PLEASE write and point me in the right direction.
This discussion is related to Re: Shunt Surgery.
After my accident I never really got better in fact I got a little better then I crashed downward and kept going with several symptoms hitting me all at once and almost losing my 3rd child.They put me on bed rest the entire pregnancy because my headache were so bad it caused my body so much stress from the pain that my body was rejecting the fetus.The first symptom was neck and shoulder pain and seeing lights when I closed my eyes when my head was hurting.The doctor diagnosed me with sever migraines and prescribed me meds for them,The meds never worked.I continued to get worse with vision problems and I would wake up in the morning to find that I could not use my hands to grip or feel anything,and my feet were in so much pain it was impossible to walk on them.The symptoms seemed to come and go never really having a steady tracking coarse,except for the pain ,so my doctor diagnosed me with fibromialgia.At one point the doctors thought I could possibly have an enlarged thyroid glad on account of I complained of not being able to swallow all the time.I have been told it could be rheumatoid arthritis and the tests came back negative.Finally the doctor had tested my head with an MRI about a year ago when I was having the very intense migraines during pregnancy and that's where he found the Charis malformation but at the time brushed it off as if it were nothing and said it could not be the cause of your problems and then asked me if I have ever been diagnosed with any type of mental disorders,when I said "no" and asked him "Why would you even ask me that question?" he then replied "Because I have never seen anybody react this way over a migraine headache before."
I was crying and in so much pain I was vomiting and no one could help me or answer any questions as to why I was so sick,to me I thought I was going to die before they could figure it out!
Well about 2 years later I am still suffering and that same doctor now admits that my headaches are caused from the Charis,so my question is:
1.)Can my other symptoms be caused by this Charis malformation?
2.)Can I be fixed?
3.)how?
4.)Where can I go to see someone who knows what they are doing so my life will be saved?
Did I mention I have a very slow heart beat and the cardiologist can figure out why?I have a perfectly healthy heart that just gave up ion me in pre-op when I had my gallbladder removed.They had to bring me back with steroids.I also can't remember things I feel like I and a90yr old Alzheimer.
If anyone can HELP me I would do ANYTHING because I do not believe that if this continues untreated that I will be alive to see my 35th birthday.From the bottom of my heart may God Bless you and Thank You so much just for reading my letter and if you can help PLEASE write and point me in the right direction.
This discussion is related to Re: Shunt Surgery.
Your story sounds all too familar with the stories I have read in the Chiari Forum.
Please post in that forum. The people seem very knowledgeable and caring; like a family.
I wish you all the best and hang in there. You sound like a strong person who has been through alot.
Please post in that forum. The people seem very knowledgeable and caring; like a family.
I wish you all the best and hang in there. You sound like a strong person who has been through alot.
Hi...yes, ur symptoms could all be chiari related...and it is not uncommon for drs to dismiss it like this either...old thinking on it was u were born with it and u may never be bothered by it...new thinking is yes u can be symptomatic and several methods of relaxation may help, but u need to know if u have a CSF blockage and overcrowding....that with symptoms r looked at to determine if u r a surgical candidate.
Surgery is not a fix or a cure....u can get worse...surgery is to slow progression and help stop formation of a syrinx...and allow the CSF to flow to help relieve some of the pressure headaches.
U will need a full exam to rule out other related issues like tethered cord, a syrinx, ehlers-danlos ect.....
I invite u to join us in the chiari forum
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
I am so sorry u r dealing with all this, but we can offer info and support.
"selma"
Surgery is not a fix or a cure....u can get worse...surgery is to slow progression and help stop formation of a syrinx...and allow the CSF to flow to help relieve some of the pressure headaches.
U will need a full exam to rule out other related issues like tethered cord, a syrinx, ehlers-danlos ect.....
I invite u to join us in the chiari forum
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
I am so sorry u r dealing with all this, but we can offer info and support.
"selma"
Have an Answer?
You are reading content posted in the Neurology Community
Top Neurology Answerers
Allentown, PA
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
