My daughter's story ... and my questions.

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

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My daughter's story ... and my questions.

Postby Janicyas mom » Tue Feb 22, 2011 1:22 am

Hello. I am new to the boards and new to understanding this condition.

Our Story:
My daughter, who is 7, had no physical symptoms that she complained about. She is very active, does gymnastics 2 days a week, cheerleading 3 days a week and is a "bundle of energy" to say the least. She had her yearly checkup in December and her pediatrician noticed a slight curvature in her back and that her left side was clearly higher than the right side of her spine, near her shoulder blades. This was not there a year ago. Based on this she sent my daughter for xrays and called immediately to say that my daughter had a severe curvature (28 degrees) and she wanted her to go to the Pediatric Orthopedic Surgeon, Dr. Rinsky, at Lucile Packard. It took nearly 2 months to get in and see him and he immediately ordered an MRI. Even though the wait list was over 2 months long, they were able to get my daughter in, in 1.5 weeks. I was expecting a call 3 or 4 days later but Dr. Rinsky called me 4 hours after the MRI and left a message that my daughter had something that was fixable but needed to be addressed immediately. He left his office number and even left his cell phone number (because he didn't want me to worry over night). Needless to say I was very impressed! What Dr. these days leaves their cell phone number?? I called him back that night and he explained that she had a sphinx and that he had already talked to the Neurosurgeon (Dr. Michael Edwards, also at Lucille Packard) and that I would need to see him immediately. All of this happened on Thursday. I received a call today (Monday) for our appointment on Thursday AM. I am still trying to get through the emotional process and trying to learn as much as I can about this condition.

Is there any recommendations on what to ask the Dr?
How long does it typically take from the consultation to the surgery?
Has anyone else had any experience with Lucille Packard and/or Dr. Edwards?
When should I be telling my daughters school? Family? I'm a single mother and can't answer the questions myself so trying to wait to tell others until I need to.
What does recovery look like? Time frame? Care needed for my daughter?

Thanks so much for any answers you can provide!

(Janicya's Mom .... pronounced Ja - KNEE - see - ah)
Janicyas mom
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Joined: Mon Feb 21, 2011 10:56 pm

Re: My daughter's story ... and my questions.

Postby razzle » Tue Feb 22, 2011 6:46 am

have never heard of the Dr. you mentioned. and if she has a syrinx with no chiari , there usually isnt any surgery done, unless her spinal fluid is blocked. And then a shunt is put in. Most important is to get a cm/sm expert dr. Here is a list of patient recommended drs in California . I would get a 2nd opinion

* Dr. Ulrich Batzdorf
Box 956901
Los Angeles 90095-6901
(ph) 310.825.5079

Dr. Boggan
University of California, Davis Hospital
Ambulatory Care Center
4860 Y Street
Sacramento, Ca
(ph) 1-866-550-5026

Dr. Harvey Edmonds
6113 N. Fresno St.
Ste. 101
Fresno, Ca. 93710
(209) 431-8500

Dr. J. Patrick Johnson
444 S. Vicente Boulevard #800
Los Angeles CA 90048

Dr. Jorge A. Lazareff
Assistant Professor, Neurological Surgery
HEAD, Pediatric Neurosurgery
UCLA Medical Center
Box 957039
10833 Le Conte Avenue
Los Angeles, CA 90095
(310) 206-6677
(310) 794-2147 fax

Dr. Haig Minassian
8135 So. Painter Ave. Ste. 300
Whittier, Ca. 90602
(ph) 562.698.0679

Dr. Louis R. Nelson
CNS Center
Medical Group
1524 McHenry Avenue,
Suite 515 Modesto
(ph) 209.527.1651
(fax) 209.527.0828

Dr. Joseph E. Welsh
525 South Drive, suite 207
Mountain View, CA 94040
(ph) 650.969.5227

Dr Daniel Won
Kaiser Permanente
411 N. Lakeview Ave
Anaheim Calif 92807

Dr. Jorge A. Lazareff
is a very popular NS for children with these disorders . There are also other top NS all over the US for children .

also too if she has a syrinx she needs a Neurosurgeon not a Othropedic dr. In my opinion the ortho dr should have asked you first about a NS , than to take it upon himself to make you an appt.
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Re: My daughter's story ... and my questions.

Postby cari » Tue Feb 22, 2011 11:07 am

I know first hand that it can be very shocking to get this type of news when there are no symptoms. Did the DR say she had a Chiari Malformation or only a syrnix? The best advice is to educate yourself, which will be easier to do after you talk with the NS. Have the NS write down for you exactly what is wrong (the name of her condition) and the surgery he plans to do. It is always a good idea to get a second opinion. I didn't believe what our NS was saying, so we got 3 opinions, and they all came back the same. One of the NS we say was Dr Lazareff from the list below (very nice man that spent plenty of time answering all our questions). I made a list of all my questions and wrote the answers to each one as we were talking to the Dr. This way, I wouldn't forget anything. We also brought along a family friend that wasn't too emotionally involved. We wanted another party that could be more objective to meet the surgeons and give us feedback.

My 4yr old daughter had surgery in August (consultations were in June). Her recovery has been amazing and not what I expected. She was hospitalized for 5 days (mostly due to sickness from anesthesia). The first day home she was running, teasing, and playing with her brother. Once home, she never had any trouble moving her head/neck, never complained of pain, and didn't need any special help or accomodations.

I didn't inform the school until the surgery was scheduled. I informed family and friends once I had researched it enough to feel like I could explain it adequately.

Some questions to ask:
What is the surgery you will be doing? How many of these have you performed? Have you performed the surgery on children? What is the expected recovery? How many days in the hospital? What are the most common complications of the surgery? What kinds of restrictions will be placed on the patient after surgery? What type of post-surgery monitoring is necessary and for how long?
Once you know what the condition is (Chiari or something else) and the type of surgery that the NS is recommending (such as decompression), there are many more specific questions you can ask.
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Joined: Thu Nov 04, 2010 8:43 am

Re: My daughter's story ... and my questions.

Postby hagiefamily » Tue Feb 22, 2011 12:39 pm

My daughter , age 12, was diagnoised this past Oct. and I too was totally shocked and confused. My girl has had symptoms since a very young age and no one wanted to believe me, you will not find that here. This is a great website and it is good to be able to reach out to others with similiar difficulties. The one thing I might mention is to make sure you advocate for your child at school. Make sure that you request a Section 504 for her at school and you should get it. This will give you accomadations for your daughters physical and emotional well being. The Section 504 is part of the 1973 ADA. Please know there are many people out there who care!!

Mom in Iowa
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Joined: Wed Feb 09, 2011 12:20 pm

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