14 Year Old Daughter Newly Diagnosed

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

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14 Year Old Daughter Newly Diagnosed

Postby jonesjam » Mon Jan 14, 2008 4:22 pm

:roll: Good afternoon. I am new to the CM world. I have a 14 year old daughter who has been having severe headaches and chronic fatigue for the past few months. We have seen rheumatologist and a neurologist. Her MRI just came back showing CM with the spinal cysts. On Friday she has 3 other MRIs to look at the spine (they couldn't tell how big the cyst was), the flow of CSF fluid, and an MRI of hte head with contrast. Her neurologist is trying to tell me her headaches and fatique aren't related... I am having buying into that. When you ask her where her head hurts, she holds the back of her head. Does anyone know any doctors at Scott & White in Temple, TX? Her neurologist is working on getting her an appointment with a neurosurgeon. What do we need to know? We had a 40 and 60 year old in our community have this surgery within the last year. I hope it is easier when you are 14. It was a pretty rough and long recovery for both of them. We are also concerned about the symptoms coming back, how do you know when thier symptoms are bad enough to have surgery. This is a great resource and website. I have learned a lot just from looking around on the site.
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Postby willsmom » Mon Jan 14, 2008 5:53 pm

Hi Jonesjam,

Welcome! My 14-year-old son was diagnosed in early September with CM and syringomyelia. He too underwent the battery of MRIs just as you described what your daughter will have. We live in Plano, just outside of Dallas. They sedated my son b/c the MRIs took about 4 hours and no one could be still for that long! He did just fine.

His decompression surgery was November 12 at Cook Children's Hospital in Ft. Worth. His NSG is Dr. John Honeycutt. I cannot say enough good things about the doctor and the hospital. We had seen another surgeon previously at Dallas Children's Hospital and I am very glad we went with Ft. Worth. The surgery was on a Monday and we were home Tuesday night! Cook Hospital has an MRI in the operating room so they can do the minimum surgery, do an MRI and if everything looks good, they do no more. The first doctor we saw was going to automatically do quite a bit of surgery that was not necessary. (You will find many different approaches to surgery. There is not one single approach that the doctors all agree on.)

My son's symptoms were numbness, tingling and decreased sensation to hot and cold all on the right side of his body. Thank God no headaches. He has bounced back wonderfully. He still cannot play football until we have the next MRI to ensure everything is flowing as it should.

Again, I cannot say enough good things about Dr. Honeycutt and Cook Hospital. I know it isn't in Temple but might be worth your drive to Ft. Worth.

I am sure you are overwhelmed with a million questions. It can be so scary. But hang in there. Teenagers do seem to bounce back very quickly.

Please feel free to send me a private message if you would like or post on the board. I'll be happy to try to help you.

Good luck.
This too shall pass.
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Location: Dallas, Texas

Postby brianfsmom » Wed Jan 16, 2008 12:06 pm

Hello and welcome

first of all, sorry to hear your daughter has been diagnosed. Do you think perhaps the fatigue just comes from having chronic pain? That certainly makes sense to me.

second, yes, surgery should be easier on a 14 year old - but beware if the 40 and 60 year olds both used the same surgeon, and this surgeon wants to operate on your daughter as well!

not only age, but experience of the surgeon factor into the recovery process. My son was decompressed at age 9, he is 12 now, and I would not say it was terrible. He even had some complications, they were awful at the time, but in retrospect were easily treated and worked out fine within a couple of weeks.

We've been through all the MRIs and tests as well - it's stressful but necessary, unfortunately! My son usually falls asleep in the tube :roll:

Good luck, and please ask whatever you would like on this board!

edit: by the way, you can make your own neurosurgeon appointments, too - please do see more than one for opinions!
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14 yead old daughter

Postby jonesjam » Tue Jan 22, 2008 3:09 pm

Well, we saw the nuerosurgeon today. My daughter does have a large Chiari, it extends down to the C2. She also has the cyst that extends about C-3-5. Her neuro examine is 100% normal. Her only complaint is severe headaches in the back of her head. Therefore, they do not think surgery is warrented. I guess that is good news, except the surgeon had no suggestions on what to try for the headaches. So we wait for the next appointment with the neurologist.

Anyone out there have a Chiari and only headaches without the numbness, tingling, muscle weakness, or trouble swallowing?

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Postby Beach4me » Thu Jan 24, 2008 7:10 am

It was just confirmed that my dd (12) has a CM1 only.

Her main symptoms are fatigue, headaches and general aches. She has had dizziness and tingling, off and on. But when she has good days...they are great days.

We are going to see a Neurologist soon. I will let you know what they say.
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