Diagnosis

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Diagnosis

Postby violin10 » Tue Jun 03, 2008 10:26 am

For the past years I have had extreme headaches and neck pain. Lately, in the past year or so, I have been experiencing a popping sound in my ears, extreme fatigue and general muscle weakness. I come home after school and sleep for three hours and then do homework and sleep more and have been loosing weight. I have been rather dizzy and have accumulated complete hearing loss in my right ear over the last year. I also have had scoliosis since the age of about 7, but it really progressed when I had my growth spurt. I am now 17 with a curve of 42 degrees. My doctor is tossing around the possibility of Chronic Fatigue Syndrome, but after reading about Chiari, I am starting to think that maybe I have finally found what has been causing all my problems. I had an MRI done (not sure exactly what of, but I know of "my head" to rule out a brain tumor) when my headaches started when I was about 7 years old, and they didn't find a brain tumor, but is it possible that they did not know to look for Chiari I? Should I show my mom or doctor the information about Chiari and suggest and MRI? MY mom and I are both desperate as I am not the active person I used to be. All I do is sleep and try to manage pain. IF you have any suggestions of your experiences with Chiari that might help me, or if you could give me advice or if you think that I might be living with undiagosed Chiari, please respond. I would be so greatful!! Does this sound like Chiari? Thank you.
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Re: Diagnosis

Postby Janice » Tue Jun 03, 2008 11:34 am

Hi Violin and Welcome!! :)

There are so many neurological conditions that carry the same or similar symptoms that it is really hard to diagnosis without an MRI. Headaches, pain, fatigue and muscle weakness could be symptoms of CM, or any number of conditions.

You should definitely talk with your mom and doctor about getting an MRI of the brain and full spine. If it isn't CM, it could lead to a diagnosis of whatever you're going through. You can't continue to suffer with the pains you're having and it seems logical that you should be scanned. Especially with a history of scoliosis.

I pray you are able to get a brain and full spine MRI's that will, at least, rule out Chiari Malformation or Syringomyelia.

Take care and let us know what happens.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

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Re: Diagnosis

Postby cricketke » Tue Jun 03, 2008 1:48 pm

I have custody of my 10 year old grandson who was diagnosed with CM and SM at age 7. They found this because of the scoliosis. The doc's told us that early onset scoliosis (before puberty) usually has another cause. His was caused by the CM and SM. You should definitely have a MRI of the brain and full spine to rule out other causes. Is your scoliosis being treated? My grandson's curves got to 27 degrees and they put him in a brace. I know they are terrible, but they do work. He will still probably need surgery as they expect it to worsen when he hits puberty.

Definitely try to find a doctor that will get to the bottom of this. A child shouldn't feel like you do!! There has to be some answers!

Good luck!!
Proud grandmother of 10 year old with scoliosis,
CM (5 cm) with decompression 2006,
SM (C4-T12),
VP Shunt, hydrocephalus,
hx of spinal meningitis at 2 mos old
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Re: Diagnosis

Postby jonesjam » Fri Jun 06, 2008 9:05 pm

hey, i was diagnosed with a cm and sm some time around november and i had the same head and fatigue symtoms. i think you should definately get it checked out or you could get some very serious irreversable sypmtoms
hope it all goes well
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Re: Diagnosis

Postby youngwife » Mon Jun 09, 2008 1:26 pm

My daughter with Chiari had these symptoms as well. She only had a mild scoliosis, but also has syringomyelia. I would certainly pursue finding out if Chiari is a possible cause.

I pray that you find answers,
Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Diagnosis

Postby violin10 » Mon Jun 09, 2008 5:46 pm

Thank you so much for you responses. I think that I may talk to my mom about Chiari soon because I can't keep going like I am. I have a doctor's appointment soon and the summer would be a good time to get an MRI done and visit a neurologist to see if it is Chiari or if there is something else going on.

Thank you all so much and I hope everyone who responded is doing well. I'll let those who responded back to me know what I find out if I tell my mom and get a scan.
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Re: Diagnosis

Postby drummergrl » Sat Jun 14, 2008 10:07 am

Hey Violin! I'm 18 and have scoliosis and chiari. I don't have a lot of info about finding a diagnosis because i'm fairly new to this too, but just wanted to let you know that if it ends up being chiari or scoliosis that requires treatment to let me know! I've had both the chiari decompression and the spinal fusion, and from my experiences, the more I knew ahead of time the better I felt. I hope everything gets worked out soon!
CM, SM, Scoliosis
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Re: Diagnosis

Postby Beach4me » Sun Jun 15, 2008 9:04 pm

Right now, I am sitting in a Duke hospital room watching my dd (13) sleep. She had decompression two days ago. She is doing great.

She slept all the time! And I mean unless it was school, eating or trying to get homework done, she was asleep. That was the first real symptom, then came the others. We visited several NS. One Dr. suggested she had Chronic Fatique. The CAT scan clearly showed a Chiari but he blew that off too. Needless to say...we marched out of there and never looked back.

Her ped Dr. ordered the CAT scan and then the MRI. After that, he helped me find a specialist for her. And am I glad! Her symptoms have gotten so much worse in the last 2 mths.

I would not rest until you have a full MRI. You sound like a smart girl and definately capable of researching, questioning and taking power in your health.
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Re: Diagnosis

Postby dizzydaisy » Mon Jun 16, 2008 5:50 am

i am 19, and got sick when i was 14. i have been tol i have chronic fatigue 100 times, and i believed it for a few years too. dr bolognese, dr royo and dr frim have all told me it's chiari, and just this morning a doctor rang my mum to tell her my blood tests were negative for lupus and that i must have chronic fatigue, despite the fact that i also have a syrinx! i am hoping that i will get to go to america and get treatment, i want my life back so badly and i can really sympathise with you in your situation, especially being so young. i think the most important thing is to let your parents know what's going on and help them to understand and then join your cause. i was terrified to tel my mum at first, but she was actually great about it. your folks will want to see you better and help you in any way they can, so tell them that in your bid to free yourself from this nightmare you did some research, and here you are! let them read what we say about the scoliosis and the chronic fatigue, and i think you'll find that they will run to the nearsest specialist with you. i'm sure they'd be delighted to know that you have found a possible cause for you torture.

my thoughts are with you, and i'm rooting for you! pm me anytime you like, i really do know exactly the hardship involved with being very fatigued at such a young age. if there's anthing i can do to help you through that i will because i remember i would have loved the same myself!

anyways.. time to end this novel, best of luck, and stay strong! ;)

DDxxx
Stick to the fight when you're hardest hit -
It's when things seem worst that you must not quit!
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Re: Diagnosis

Postby violin10 » Fri Jun 20, 2008 6:04 pm

Well, I got my CT scan done and no Chiari was detected. No masses were found, cranial shifting was found though and I can't remember what else because I was reading the findings upside-down. I am very frusterated and am in so much pain. My head feels as though it is going to explode and that there is too much pressure in it. My doctor that had me get the CT scan is just having me do more PT thinking that my headaches are coming from muscle problems. I am seeing a chiropractor she recommended on Tuesday and am supposed to see a neurologist that "likes headaches." Even though my CT didn't show Chiari, I still feel that my symptoms match those of Chiari and that maybe it is the missing piece of the puzzle in this mess of pain an suffering I am in. But I would feel stupid pushing for an MRI and then having that show nothing at all. I am just frusterated and cannot deal with the pain anymore and the pain at the back of my neck is horrible and the actual physical vertebral defect present makes me think that there is something there that a CT of my head didn't pick up. Any recomendations of a pediatric neurologist/ns in St. Louis?
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Re: Diagnosis

Postby Janice » Fri Jun 20, 2008 6:51 pm

I'm sorry about all you're going through and the frustration it's causing. Unfortunately, there are times when a CT will not show CM. You should have an MRI of the brain.

Someone posted recently about whether or not a CT scan will diagnose CM. If you did a search for CT scan, I believe you'll find it.

Take care and I pray you get this resolve so you can receive a treatment plan that works best for you. (((((hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Diagnosis

Postby razzle51 » Sat Jun 21, 2008 10:40 am

There are many drs in Missouri so I would reccommend Dr.Frim in Chicago .
excellant childrens and teen dr. Here is his link

http://www.uchospitals.edu/physicians/david-frim.html
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Re: Diagnosis

Postby youngwife » Sun Jun 22, 2008 11:07 pm

Just because no chiari was "detected" doesn't mean it's not there. I strongly believe that a chiari specialist needs to determine if it is indeed there or not.
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Diagnosis

Postby youngwife » Sun Jun 22, 2008 11:09 pm

Just because no chiari is "detected", does NOT mean it isn't there. :wink: Ask me how I know!!?!! Please try to send your films to a true chairi expert or see one SOON!!
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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