Need your opinions.

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

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Need your opinions.

Postby KyliesSis » Tue Mar 04, 2008 1:50 pm

Hello everyone,

I've been reading for a few weeks now, and I see that you guys are very helpful and supportive. My five year old little sister was just recently diagnosed with syringomyelia. My brother posted earlier what happened (the quote below is his). We saw a neurosurgeon in London, ON a couple of weeks ago, and she told us that she was fine and that she would see her in six months. My family and I are worried because she said that the only time they would do something is when she wasn't able to pick up a pen and write, but that seems like a little too late. Lately, she's been waking up with a "funny feeling" in her hands, and we're really worried. We have appointments lined up with SickKids with Dr. J. Drake in Toronto, ON and at UofC Hospital with Dr. Frim in Illinois. Any advice that you could give me would be helpful, and maybe, questions to ask the doctor. We've been doing research, but you really don't understand it unless it's happening to you. Thank you for taking the time to read this.

- Kylie's Sister

Hey guys, first I want to thank you in advance for any help. My 5 year old sister has been diagnosed with syringomyelia, and we are in panic. She would start crying because she had headaches, and could not move her head to her right, or look up. She had a fever, for about a week. We went to doctors and emergency rooms, and they told us that its probably an infection. Until we went to this one pediatrician, who sent us to do an MRI. the mri found that she has syringomyelia. The doctor is going to contact us early next week about our appointments with the neurologist, and neurosurgeon. He said that her biggest syrinx is 3mm, but she has another smaller one. My mom says the doctor said she has 3, but i only heard two, we were in panic when we first heard it, so we dont know for sure. We dont even know how significant this is, and any help would be appreciated. Also if anyone knows a neurosurgeon, or neurologist who has experience with syringomyelia, in Ontario, Canada, or Michigan, or anywhere in North America, please give us a phone number.

The pedriatician here says that its really rare for kids. The kid is incredibly active, even now she is as active as she has ever been. After the fever went down, she was back to her normal self, and has not complained of headaches, or neck stiffness, or anything else.
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Postby Janice » Tue Mar 04, 2008 3:58 pm

Hi KyliesSis,

I think it's wonderful that you're getting involved in your sister's health issues. It's great to see Dr. Frim's name on your list because he is one of the leading experts in these types of disorders.

The most important question you can ask is "Why". Why does she have syrinxes at all? Most syrinxes develop for some reasons and the doctors need to find the underlying issue in order to relieve the fluid from the syrinx. There are numerous causes a syrinx (SM) will form and the leading cause is Chiari Malformation (CM). Did she have an MRI of the brain to rule out CM?

Another thing is to make sure she has an MRI of the brain and full spine in order to make sure there are no other issues (tumors, CM, etc).

There are two sites that should have necessary information to help you along the way. 1) ASAP.org has loads of information regarding SM and CM. 2) TCI (Northshore Hospital) has a collection of videos you can watch to gain more knowledge regarding CM and/or SM.

Once you visit and read/view the available information on these sites, you should be able to make a list of questions, symptoms, etc. You should also start a symptom journal to take along with you to her appointments. Get copies of any test results, MRI's, Scans, etc., to take to any appointments.

Be aware that most times, when only a syrinx is present, a conservative method of treatment is rendered. The doctors may treat the symptoms as opposed to providing surgery as an option. I have a syrinx (only) also and am being conservatively treated. I am not a surgical candidate yet and I have many debilitating symptoms. I am comfortable with this option, at this time but there are many times I wonder if I should consider surgery. Especially when the symptoms are too overwhelming. However, I keep in mind that MY doctors (who are not experts in SM) have said that surgery is not a cure, it is only a way to slow down the progression of symptoms and even this is not a guarantee.

Hopefully you will receive useful information from others who visit this forum. Everyone here is very supportive, helpful and caring.

Take care and I pray your sister gets the necessary help she needs.
Last edited by Janice on Wed Mar 05, 2008 9:56 am, edited 1 time in total.
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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Postby angie7 » Tue Mar 04, 2008 8:59 pm

All I can say is its great that you will be seeing Dr Frim! He is a leading expert among peds in SM. He will *hopefully* find the cause of her syrinx.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby KyliesSis » Tue Mar 04, 2008 10:24 pm

Hey guys,
I want to thank you for replying so quickly. I'm really excited about her appointment with Dr. Frim. I've read his name quite a few times and am anxious to see what he has to say. So far, the doctors have told us that it could've been meningitis, and/or a birth defect. Kylie was born high risk, my mother was 42 at the time, so a lot of tests were performed on her to see if anything was wrong when she was born (an MRI was not). I honestly believe that it isn't a birth defect. Her pediatrician found it by mistake. He was looking for something completely different, and sent her for an MRI.

Her MRI was done on half of her brain, and the spinal cord. Dr. Frim's secretary said that it was fine. A neurologist in Windsor told us that Kylie doesn't have Chiari Malformation, and showed us the MRI. We have copies of the MRI and are currently in the process of getting a copy of her file. That is proving to be a challenge, as the Dr. seems hesitant to release it.

Back in January, she had a fever of 38c-39c and we were in two different ER's trying to figure out what was wrong. After keeping us in there for over 12 hours, they let us go, saying that she just had a viral infection, and shoved antibiotics in our hands. After the ER, we decided to go to her current pediatrician. Our family Dr. told us to rush to the ER for the 3rd time, because the child had meningitis. When we got there, they touched her scalp, asked if she could touch her chin to her chest, and sent us home. Meanwhile, at the other ER they did an Xray, and let us go.

Today, she came home from school with another fever of 39c. We're worried that the fever might make the syrinx bigger. We are going to her pediatrician tomorrow (I'm not too happy with the ER, and the service we get there; we'll be there till eight in the morning with no results). Can this fever change her situation?

I cannot begin to describe how helpful you all have been. While I haven't posted on here, I have been reading a lot. You have helped my family and I in more ways than you can understand; you have given us hope.

God bless,
-Ky's Sis.
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Re: Need your opinions.

Postby KyliesSis » Wed Mar 05, 2008 6:24 pm

KyliesSis wrote:Hello everyone,

I've been reading for a few weeks now, and I see that you guys are very helpful and supportive. My five year old little sister was just recently diagnosed with syringomyelia. My brother posted earlier what happened (the quote below is his). We saw a neurosurgeon in London, ON a couple of weeks ago, and she told us that she was fine and that she would see her in six months. My family and I are worried because she said that the only time they would do something is when she wasn't able to pick up a pen and write, but that seems like a little too late. Lately, she's been waking up with a "funny feeling" in her hands, and we're really worried. We have appointments lined up with SickKids with Dr. J. Drake in Toronto, ON and at UofC Hospital with Dr. Frim in Illinois. Any advice that you could give me would be helpful, and maybe, questions to ask the doctor. We've been doing research, but you really don't understand it unless it's happening to you. Thank you for taking the time to read this.

- Kylie's Sister

Hey guys, first I want to thank you in advance for any help. My 5 year old sister has been diagnosed with syringomyelia, and we are in panic. She would start crying because she had headaches, and could not move her head to her right, or look up. She had a fever, for about a week. We went to doctors and emergency rooms, and they told us that its probably an infection. Until we went to this one pediatrician, who sent us to do an MRI. the mri found that she has syringomyelia. The doctor is going to contact us early next week about our appointments with the neurologist, and neurosurgeon. He said that her biggest syrinx is 3mm, but she has another smaller one. My mom says the doctor said she has 3, but i only heard two, we were in panic when we first heard it, so we dont know for sure. We dont even know how significant this is, and any help would be appreciated. Also if anyone knows a neurosurgeon, or neurologist who has experience with syringomyelia, in Ontario, Canada, or Michigan, or anywhere in North America, please give us a phone number.

The pedriatician here says that its really rare for kids. The kid is incredibly active, even now she is as active as she has ever been. After the fever went down, she was back to her normal self, and has not complained of headaches, or neck stiffness, or anything else.
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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