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Daughter just diagnosed...

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Unread 04-10-2012, 09:30 PM   #1
cmh799702
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Confused Daughter just diagnosed...

Hi! My name is Celina and my 2 1/2 year old daughter was just diagnosed with Chiari Malformation and Syringomyelia. Over the last six weeks she has had 3 MRI's. Her neurologist said that her Chiari was "simple" and that she will need MRI's every year unless a new symptom appears. She will be starting physicial therapy to help with her pain. I have so many questions and it seems like nobody is really willing to help answer them...

Almost 2 years ago she started waking up at night with severe leg pains with muscle cramps, muscle spasms, her legs felt like they were on fire, and she would be up for 90 minutes and then sleep for an hour and wake up again (sometimes every hour). I brought this to the attention to her primary doctor and she ordered blood work and x-rays. My daughter is healthy for the most part; has a hernia and a peanut/tree nut allergy. She started walking at 9 months and has always been advanced. She is average height but her weight has always been on the low side (at her 2 year check up she was -3% on the growth chart). She has always been clumsy and would literally trip over her feet. Each time she fell she would either hit her head, bust open her upper lip, and broke her 2 front teeth (which had to be surgicially pulled).

She is our third child; we have a 14 year old daughter, 9 year old son, and our newest edition is almost 8 months. From what I understand this is a congential disorder; but can't be seen on ultrasound.

Some the questions we have are regarding her future and what she can and can't do. I have read that this disorder is not curable and that the surgery is only a form of easing the pain. We also are wondering if the malformation will grow? Will it stay "simple"? What exactly does "simple" mean? Should we consider keep her safe and not allow her to do certain activities? Should we prepare to homeschool her so that nothing will happen to her head while at school? I can probably keep going... If anyone can help us. As far as I know there are no support groups in my area (the closest one is in Denver, Colorado).

We would be grateful if someone out there can help us...
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Unread 04-16-2012, 11:51 PM   #2
res5562965
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Quote:
Originally Posted by cmh799702 View Post
Hi! My name is Celina and my 2 1/2 year old daughter was just diagnosed with Chiari Malformation and Syringomyelia. Over the last six weeks she has had 3 MRI's. Her neurologist said that her Chiari was "simple" and that she will need MRI's every year unless a new symptom appears. She will be starting physicial therapy to help with her pain. I have so many questions and it seems like nobody is really willing to help answer them...

Almost 2 years ago she started waking up at night with severe leg pains with muscle cramps, muscle spasms, her legs felt like they were on fire, and she would be up for 90 minutes and then sleep for an hour and wake up again (sometimes every hour). I brought this to the attention to her primary doctor and she ordered blood work and x-rays. My daughter is healthy for the most part; has a hernia and a peanut/tree nut allergy. She started walking at 9 months and has always been advanced. She is average height but her weight has always been on the low side (at her 2 year check up she was -3% on the growth chart). She has always been clumsy and would literally trip over her feet. Each time she fell she would either hit her head, bust open her upper lip, and broke her 2 front teeth (which had to be surgicially pulled).

She is our third child; we have a 14 year old daughter, 9 year old son, and our newest edition is almost 8 months. From what I understand this is a congential disorder; but can't be seen on ultrasound.

Some the questions we have are regarding her future and what she can and can't do. I have read that this disorder is not curable and that the surgery is only a form of easing the pain. We also are wondering if the malformation will grow? Will it stay "simple"? What exactly does "simple" mean? Should we consider keep her safe and not allow her to do certain activities? Should we prepare to homeschool her so that nothing will happen to her head while at school? I can probably keep going... If anyone can help us. As far as I know there are no support groups in my area (the closest one is in Denver, Colorado).

We would be grateful if someone out there can help us...
I was diagnosed with Chiari I Malformation at age 48. I started having "strange" symptons probably about 5 years prior to that. Although the Chiari (tonsils of the brain herniated through base of skull) did not appear to be severe my symptons only worsened. If she is already having problems with sleep and balance her Chiari may not be as simple as your doctor thinks. The first neurologist I went to actually told me that my problems were not neurological and referred me back to my primary physician. I had gotten to the point that if I sneezed, gagged, or coughed I would fall down and not be able to raise my head and I slept ALL the time. My primary physician LISTENED to me and he diagnosed the Chiari. He immediately sent me to another neurologist and I had shunt placed in my brain that allows my spinal fluid to move from my brain. That fluid build up was causing pressure on my brain and the correct diagnosis and shunt probably saved my life. I did however end up having the Chiari Surgery (Feb 2011) where the opening at the base of my skull was enlarged therefore preventing the pressure of the herniated tonsils of my brain causing unmanageable pain. The point of me telling you all the above is to advise you to find a doctor that will listen to YOU. I have also read that physical therapy can actually be dangerous to someone with Chiari, but I have not had a neurologist agree with me on that. I refused physical therapy. I still have some pain but I am prescribed pain medicine. My memory has been affected but am doing pretty good right now. Hope my experience helps you find the information you need to get your daughter the attention she needs. (I am in Georgia)
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Unread 04-23-2012, 05:43 AM   #3
meggsy064
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Quote:
Originally Posted by res5562965 View Post
I was diagnosed with Chiari I Malformation at age 48. I started having "strange" symptons probably about 5 years prior to that. Although the Chiari (tonsils of the brain herniated through base of skull) did not appear to be severe my symptons only worsened. If she is already having problems with sleep and balance her Chiari may not be as simple as your doctor thinks. The first neurologist I went to actually told me that my problems were not neurological and referred me back to my primary physician. I had gotten to the point that if I sneezed, gagged, or coughed I would fall down and not be able to raise my head and I slept ALL the time. My primary physician LISTENED to me and he diagnosed the Chiari. He immediately sent me to another neurologist and I had shunt placed in my brain that allows my spinal fluid to move from my brain. That fluid build up was causing pressure on my brain and the correct diagnosis and shunt probably saved my life. I did however end up having the Chiari Surgery (Feb 2011) where the opening at the base of my skull was enlarged therefore preventing the pressure of the herniated tonsils of my brain causing unmanageable pain. The point of me telling you all the above is to advise you to find a doctor that will listen to YOU. I have also read that physical therapy can actually be dangerous to someone with Chiari, but I have not had a neurologist agree with me on that. I refused physical therapy. I still have some pain but I am prescribed pain medicine. My memory has been affected but am doing pretty good right now. Hope my experience helps you find the information you need to get your daughter the attention she needs. (I am in Georgia)
Hi, I am a 48yo female from Melbourne, Australia and i too have a similar story to tell as the one above. I've only recently been diagnosed with Chiari Malformation after symptoms beginning about 5 years ago, tho thinking back now, they probably began earlier than that. After being tested for carple tunnel syndrome, arthritis, even had heart checks, xrays, ct scans, it was only after finally having an MRI scan that it showed what was wrong. Other than Chiari, i also have something else wrong which causes extreme pain. Tho i cant remember what it's called. Is it the Syrinx??
The pain is every day, some days better than others, tho sick of taking pills. My fingers are numb too, headaches, memory loss at times, hard to concentrate, ears ringing, tired most of the time, grumpy, no life, i've had to stop work and my daughter who is 17, i worry for her in case she has it as well, as she has shown signs I want to be a better mother for her, be able to do things together instead of her coming home and me being in bed, pretty much most of the time
Anyway, i'm still waiting for my surgery. Not much gets done here with our Health System unless you are literally at death's door. I'm going to see Neurologist in just over a week again, to discuss more about my 'condition' and surgery.
I do sympathise with all who have this condition, as i wouldn't wish it on my worst enemy.
Keep smiling, cos at least we are still here to talk about it.
I also lost a daughter to Biliary Atresia, tho that's another story
Love and best wishes to you all.
Meggsy xoxoxo
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Unread 11-18-2012, 02:17 PM   #4
chiarihutch
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Smile I have Chiari and I think I live near Augusta.

Hi, res5562965,

I am new to this forum. I looked up Chiari Malformation and found your posts, along with posts from other people. Yours interested me because of your 8 shunt surgeries being done at University Hospital in Augusta, and your decompression being done at Emory by Dr. Daniel Barrow. If I remember correctly, you said in another post that your shunt is helping you. I am so very glad. My shunt has been a major blessing to me as well.

Do you have a local neurosurgeon to follow you? The other Chiarians I know have had trouble finding a local neurosurgeon to help. All three of my Chiari surgeries have been done out of state (NC and NY). All the neurosurgeons I have seen in Augusta have told me that I am too complicated. I do have a local neurologist, but he doesn't know much about Chiari. He has 3 complicated Chiari patients (the other 2 are my friends) and he doesn't want any more Chiari patients.

I have a neurosurgeon in Roswell, GA, who is managing my vp shunt. My vp shunt and I have an anniversary coming up in January. My shunt will be in me 10 years this January 2013. This neurosurgeon is helping some of my Chiari friends who live in various places in Georgia. I started several Chiari support groups on Facebook: (1) Georgia Chiarians (which has almost 90 members) and the local CSRA Chiarians group (which has about 10 members--not all from the CSRA--some are about an hour away). We had a Chiari walk in Atlanta in September and had over 100 people there--22 of which were Chiarians of all ages, etc.

I am in your age range. I was diagnosed in September 2000, but I have had Chiari symptoms since I was a very little girl.

I am hoping we can talk. I am trying to start a local Chiari group. There are about 5-6 of us to start the group--that I have found so far.

By the way, my name is Martha.

I hope you will be getting on here very soon and will see this.

************************************************** ****
Quote:
Originally Posted by res5562965 View Post
I was diagnosed with Chiari I Malformation at age 48. I started having "strange" symptons probably about 5 years prior to that. Although the Chiari (tonsils of the brain herniated through base of skull) did not appear to be severe my symptons only worsened. If she is already having problems with sleep and balance her Chiari may not be as simple as your doctor thinks. The first neurologist I went to actually told me that my problems were not neurological and referred me back to my primary physician. I had gotten to the point that if I sneezed, gagged, or coughed I would fall down and not be able to raise my head and I slept ALL the time. My primary physician LISTENED to me and he diagnosed the Chiari. He immediately sent me to another neurologist and I had shunt placed in my brain that allows my spinal fluid to move from my brain. That fluid build up was causing pressure on my brain and the correct diagnosis and shunt probably saved my life. I did however end up having the Chiari Surgery (Feb 2011) where the opening at the base of my skull was enlarged therefore preventing the pressure of the herniated tonsils of my brain causing unmanageable pain. The point of me telling you all the above is to advise you to find a doctor that will listen to YOU. I have also read that physical therapy can actually be dangerous to someone with Chiari, but I have not had a neurologist agree with me on that. I refused physical therapy. I still have some pain but I am prescribed pain medicine. My memory has been affected but am doing pretty good right now. Hope my experience helps you find the information you need to get your daughter the attention she needs. (I am in Georgia)
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Unread 11-18-2012, 02:42 PM   #5
chiarihutch
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Default Pediatric and Genetic Chiari

Hi, Celina,

I have had Chiari symptoms since birth. Unfortunately, the majority of doctors today are working on Chiari information that is more than 20 years old. Very few have kept up with the research because they don't have time with all the brain conditions they are dealing with and Chiari is a very complicated condition. There are some informative studies *edit* concerning Chiari being congenital and more than one family member having it, along with information about children with Chiari. *edit*

Duke University is doing genetic research on Chiari being passed from one generation to another as well as multiple family members (siblings and parents) having Chiari. **
*edit*
I hope this info helps you. Physical therapy depends on the therapist you have. I have had some good and and not-so-good therapists. It also depends on what kind of therapy they are doing.

I can attest that chiropractic care is out of the picture the majority of the time. This kind of care actually made me worse because the doctor did the old fashioned cracking and popping of my neck and spine--which could have paralyzed me. Instead, it just made me much worse! Most chiropractic care is bad for Chiarians from what I have seen on other forums and on the Chiari groups on Facebook.

If you can let me know what area you are in, I can see if there is a support group near you.

Hope this is helpful!

*********************************************

Quote:
Originally Posted by cmh799702 View Post
Hi! My name is Celina and my 2 1/2 year old daughter was just diagnosed with Chiari Malformation and Syringomyelia. Over the last six weeks she has had 3 MRI's. Her neurologist said that her Chiari was "simple" and that she will need MRI's every year unless a new symptom appears. She will be starting physicial therapy to help with her pain. I have so many questions and it seems like nobody is really willing to help answer them...

Almost 2 years ago she started waking up at night with severe leg pains with muscle cramps, muscle spasms, her legs felt like they were on fire, and she would be up for 90 minutes and then sleep for an hour and wake up again (sometimes every hour). I brought this to the attention to her primary doctor and she ordered blood work and x-rays. My daughter is healthy for the most part; has a hernia and a peanut/tree nut allergy. She started walking at 9 months and has always been advanced. She is average height but her weight has always been on the low side (at her 2 year check up she was -3% on the growth chart). She has always been clumsy and would literally trip over her feet. Each time she fell she would either hit her head, bust open her upper lip, and broke her 2 front teeth (which had to be surgicially pulled).

She is our third child; we have a 14 year old daughter, 9 year old son, and our newest edition is almost 8 months. From what I understand this is a congential disorder; but can't be seen on ultrasound.

Some the questions we have are regarding her future and what she can and can't do. I have read that this disorder is not curable and that the surgery is only a form of easing the pain. We also are wondering if the malformation will grow? Will it stay "simple"? What exactly does "simple" mean? Should we consider keep her safe and not allow her to do certain activities? Should we prepare to homeschool her so that nothing will happen to her head while at school? I can probably keep going... If anyone can help us. As far as I know there are no support groups in my area (the closest one is in Denver, Colorado).

We would be grateful if someone out there can help us...

Last edited by Chemar; 11-18-2012 at 03:13 PM. Reason: linking guidelines for new members
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