Diagnosed... Now What?!

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

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Diagnosed... Now What?!

Postby kellycotton1432 » Wed Feb 17, 2010 10:04 pm

My 12 year old daughter was diagnosed "officially" today with a syrinx from c4-c6. The Neurologist believes it is from a trauma 3 years ago. No Chiari showed up on the cervical MRI... he has ordered another cervical MRi and a brain MRI as well. We have a referral to see a Neurosurgeon Eric Trumble in Orlando. Does anyone have any experience with him? I was thinking of trying to get her an appt in Miami instead, but I just don't know. I am really wondering what to expect next, doc says her headaches (they are every day and sometimes debilitating) are not from this, and they will monitor her... Does anyone know if the Chiari only shows up in the cervical or can it only show up on the brain MRI as well?! My poor DD is so upset because he told her she can't do anything she loves to do (basketball, cheerleading, 4-wheeling etc.)
kellycotton1432
 
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Re: Diagnosed... Now What?!

Postby lttutrow » Thu Feb 18, 2010 12:49 am

I'd go with Sara's recommendations for nsgs. in Florida, she has had a lot of experiences with many and would be a great resource. I think she responded to the post about Looking for a Neurosurgeon in Central Florida.

I know this is overwhelming to adjust to as a parent, and for our kids all the harder. I can just share what's been most helpful for my kids, but you know your daughter best and what works or doesn't work for her. We found a HUGE difference, for my son especially, when he could connect and talk or meet with other kids. Each child, and neurosurgeon, has different restrictions they impose. For my son, the restrictions of no ramping his skateboard, trampolenes, and having to use helmets for things like roller skating seemed to really impose on him initially. It wasn't that these were activities he did often, but he hated that anything had to be different because of THIS. It's a grief process in a way, both for them and us as parents. We try to balance letting them know we hear what they are saying and feeling, and still trying to teach them coping skills to deal with their physical pain and emotional stress that creates. We try to also remind them of things they can do without causing pain, and continue to introduce them to new experiences. My son is really getting interested in art, I think that's a terrific way for him to express himself that we likely would never have pursued before all of this! CCI runs a kids e-mail list, and there are likely other kids near your daughters age in your area that she may find comfort in meeting or talking to. We've also found connections through CaringBridge and the asap annual conference.
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Re: Diagnosed... Now What?!

Postby kellycotton1432 » Thu Feb 18, 2010 3:05 pm

Yeah Sara recommended the one in Miami and Roz recommended the one in Orlando... I think I am going to take her to Orlando and Miami as a second opinion (cause I can send her films to Miami for a consult) I actually showed my daughter your kids caringbridge pages, now she wants to do one... The neurologist thinks she may have fluid on the brain as well so I guess he really doesn't want her doing anything physical that will hurt her. I understand; it is just hard when she has been so active! I am in school for photography and she has shown an interest in it, so I think I will get her into some classes at my college :) Thanks for all your suggestions! It really helps to have somewhere to come "talk" to other parents!
kellycotton1432
 
Posts: 11
Joined: Sun Feb 14, 2010 9:31 pm

Re: Diagnosed... Now What?!

Postby lttutrow » Fri Feb 19, 2010 12:14 am

She really should set one up!! It's easy to do, and a great way to keep friends and family up to date. It's also a great way to find support and encouragement. If you scroll through the guestbooks on cb, you'll see where others have left their sites in the signature, and you can click to go to their sites. We also got the "we'll monitor" approach, followed by a long trial and error with different medicines before we found a nsg.
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