headaches and vomiting

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headaches and vomiting

Postby tfralic » Tue May 20, 2008 7:44 pm

Hi. I'm hoping someone can share some information. My 6 year old granddaughter was diagnosed at age 3 with a syrinx, hydrocephalus and tethered cord. She had shunt surgery for the hydrocephalus and also had the tethered cord release surgery(at 3 years old). Her neurosurgeon couldn't find the cause of the syrinx and decided to keep a close watch since she was doing well. She's done really well since that time but since the end of March, every 2 weeks she's been getting headaches and vomiting with them. Her doctor did a CAT scan and said her ventricles looked better than ever and did not think the syrinx would cause these symptoms. When these episodes occur she always complains of the same ear hurting and "feeling funny". Does this sound familiar to anyone? I'm concerned that he said these symptoms wouldn't be connected with the syrinx when I read on the home page that a symptom is headaches and body aches. He was doing an MRI every year to keep watch on the syrinx but hasn't done one recently....he's also leaving the hospital(Columbus,OH) and we'll be getting a new Dr. soon. Any help would be appreciated.
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Re: headaches and vomiting

Postby brianfsmom » Wed May 21, 2008 5:55 am

Hello, sorry about your granddaughter. It is so hard when it's the little ones.

I don't have experience with shunts and hydrocephalus, but I'm not sure I would blame this on the syrinx right away. However, I would insist on a full workup, including MRI to check the syrinx and tethered cord to be sure. I would have also thought of the shunt, or of migraine, because of the two week cycles, and the vomiting with strange pains. Does she have sensitivity to light when she has the headaches, and where do they hurt? Are they alleviated by a change in position? Does her back also hurt? Those are questions whose answers might help shed some light.

I hope she feels better and that you get some answers. At least it sounds encouraging that her ventricles look good. Sorry to not know more.
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Re: headaches and vomiting

Postby Janice » Wed May 21, 2008 10:31 am

I agree with brianfsmom. Get the full workup and MRI to check everything out and then go from there.

I'm sorry to hear that she's having such a difficult time and I pray the situation gets resolved real soon.

Take care and you both are in my thoughts and prayers.
GOD Bless!

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: headaches and vomiting

Postby tfralic » Wed May 21, 2008 5:59 pm

Thanks for your input. It's so helpful to get others opinions, sometimes it's hard to see things clearly when you get so worried about them. Her neurosurgeon suspects migraines and is sending her to a specialist but we requested an MRI to be sure. I'd love for my daughter and son in law to take her to Dr. Frim, I keep reading so much about him. Anyway, thanks for your help, please keep Emma in your prayers.
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Re: headaches and vomiting

Postby Sara » Sat May 24, 2008 8:53 am

Just a couple of thoughts. ASk about if she could have intracranial hypertension. Many patients with functioning shunts have normal ventricles, or even slit ventricles and still have high pressure. Have your surgeon review this article: http://www.ncbi.nlm.nih.gov/pubmed/1200 ... d_RVDocSum

The only way to know for sure if high pressure is involved is to do ICP monitoring during an episode. This is done inpatient. Have you seen Luciano? he is at the Cleveland Clinic and might be of help. Migraines can be associated with vomiting and cylcic headahcs, so a headache specialist might help rule that out also.

My daughter is 13 and has a headache every day, but sometimes she gets severe headaches which send her to bed for a couple days at a time and no one is sure why. It's frustrating and hard to see the little ones suffer so much, and harder when no one seems to have any answers. We just have to keep looking and hoping and leave no stone unturned.

Keep us posted.
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