New to this board

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

Moderator: pmaxwell

New to this board

Postby 3kidssane » Tue Dec 29, 2009 9:08 am

My DD was just diagnosed with ACM and SM. She is 6 years old. We were very unsatisfied with out neurologist and are getting a second oppinion with a ped. Neuro. on Feb. 1. Untill then we are left with a lot of questions.

When she was diagnosed the Dr. said that the Syrinx was a pretty good size for a child of her age. But in the same sentance he said it was nothing to worry about. He said that he would not suggest surgery at her age. It was presented as a wait and see type thing. I tried to ask several questions and got snippy answers. At one point i asked if he could refer me to someone else and he said no and that he did not even want to set up another appointment untill her symptoms grew worse. I tried to tell him about the symptoms she does have, (head ache, leg cramps, clumbsiness, vision probs. etc) He said she was faking it. I was so MAD! After letting him have it he refered me to someone else. Her regular Ped. Who is familure with looking at these type of MRI/CT scans took a look and said that he was correct in his diagnosis.

I don't know where to go from here. the Neurologist said that she should not strain her back. WHY? What does that mean? What activities can she do? What should I keep her from doing? I never even questioned him about this because I was so mad about him saying she was faking it. :oops: Anyway's those are my questions. If you can help i would be ever greatful.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
Posts: 36
Joined: Tue Dec 29, 2009 12:56 am

Re: New to this board

Postby sydney'smom » Tue Dec 29, 2009 9:14 am

I am sorry to hear about your daughter. My 9 yr old daughter was dx in November with a 19mm CM and we are scheduled for our first appointment with a NS next week.

You have come to the right place. I have found this board to be so helpful in helping me to understand what we are dealing with. Where are you located? There are people from all over the world on here that can help give you a referal to someone in your area.

Best of luck! I hope you are able to find a doctor that can answer your questions.
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
Posts: 29
Joined: Thu Dec 03, 2009 3:37 pm

Re: New to this board

Postby lttutrow » Tue Dec 29, 2009 12:21 pm

I understand your frustration, we went a year with a similar opinion from a Neurologist, but really a Neurosurgeon is who you need to see. If you post what major city you are close to, someone will chime in with Neurosurgeons close to you. You are wise to listen to that instinct for a second opinion, hang in there!!
By the way, each Dr. seems to have their own lists of do's and don'ts. We have to be mindful to try to get any cough stopped quickly with medicines or else my son's SM symptoms increase, as do they if he does any heavy lifting and on some rollercoaster rides. He also avoids bumper cars, contact sports like wrestling/football, and trampolines.
Best wishes,
Posts: 410
Joined: Fri May 02, 2008 10:16 pm

Re: New to this board

Postby tnajk » Tue Dec 29, 2009 5:22 pm

My son only has the Chiari part, and no syrinx.... but from what I've learned, it's important to find the cause of syrinx and address it. You definitely need another opinion or two. Also, you should take your child to see a Neurosurgeon as they would be the one to decide if she needs surgery or not. Not the Neurologist!
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
Posts: 31
Joined: Wed Dec 09, 2009 11:36 pm

Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 9 guests