Daugter just diagnosed - Please Read!

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

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Daugter just diagnosed - Please Read!

Postby nature » Wed Dec 09, 2009 10:07 am

My 13 year old daughter was just diagnosed with CM with the tonsils at 6mm and syringomelia from C2 to T10,(from the MRI report) We do not see the NS til the 17th in Oklahoma City. She does not have any headaches, just the abnormal sensations in her right side.( Numbness, tingling and tempature disturbances.) I am wondering how bad this is, if surgery is likely and if they suggest surgery if she will be able to get back to her normal life after she recovers? She is very active! She barrell races, is a starter on her school basketball team, plays softball and is a cheerleader. And I know it seems vain to worry if she will be able to do these things in the future, but when your 13, these are the things you worry about. Her neuroligist really did not give us many answers, so ANY information we can get would be so appreciated!
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Re: Daugter just diagnosed - Please Read!

Postby lttutrow » Wed Dec 09, 2009 10:41 am

My daughter is 12, and she had surgery last year. She did not have a syrinx, but my son has both CM and SM. Both are very active, my daughter shows/horseback rides and plays volleyball and basketball for her school. My son plays on travel basketball and baseball leagues. Each person is so different, but both of my kids have been able to return to these after their surgeries. They do still have pain, and my son still misses school and is on medications to try to treat his head pain, but they continue participating. When they've been in between seasons and aren't doing these, they still have pain, and so I think they've decided they may as well do what they enjoy and deal with the bad days as they come.
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Re: Daugter just diagnosed - Please Read!

Postby nature » Wed Dec 09, 2009 10:49 am

Oh wow! You have no idea how much just hearing that kids are able to enjoy their lives with this is helpful! It s just all she is worried about, that and maybe them having to shave her head! I am very thankful that she does not have the pain associated with this yet, but I guess that might be to come. She has been gagging and throwing up some and I have trouble waking her sometimes. Are these symptoms associated with this? I read that it can affect your gag reflex somewhere I think. It is just so fustrating to learn this about your child, then have to wait to see a doctor for answers. Thank You for your reply!
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Re: Daugter just diagnosed - Please Read!

Postby lttutrow » Wed Dec 09, 2009 11:48 am

All too well, I remember how hard that waiting to get in to the nsg. time can be, hang in there ((HUGS)). Neither of my kids had their heads shaved, a small patch of hair was shaved right around their incisions only. For my daughter, once her hair was down out of the ponytail, you couldn't see a thing different with her hair, and with it up in the pony right after, the pony hung over the incision and so you didn't even see it unless she moved just right. Now when it's up or down, you can't see the scar. There are pics on her cb site if that might help? The link is at the end of my post.

The gag reflex, or swallowing problems, do go with all of this. My son enjoys freaking out his friends with sticking his finger on the back of his throat, he doesn't have a gag reflex. He sometimes does have trouble with swallowing, but this has been better since his surgery but isn't gone. I just have in his 504 that a person certified in the Heimlich should be present during each of his lunch periods, turns out it is not a requirement of the school that each staff is CPR/First Aid certified, so this assures he has that support should he need it. He doesn't throw up, but his stomach is upset a lot, we have a lot of "not good food days". He is what we call a grazer, he'll eat a bite here and there all day but rarely eats what we would think of as a meal because his stomach starts to hurt when he eats. I found such help on this board when we started finding out about all of this, and I hope you find it as supportive!!
Lori
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Re: Daugter just diagnosed - Please Read!

Postby nature » Wed Dec 09, 2009 12:19 pm

Lori,
Yes, this site seems to be one of the most helpful things I have found so far. It seems like there are a lot of people with this. I guess we are pretty lucky that her symptoms are so slight. Thank You for all the information. I have been to your childrens sites and they really seem to be doing well. Hopefully, these stories will give my daughter some hope. She told me last night she was going back to school right after surgery if she has to have it. She s tough but she s not understanding a lot of this right now! Thanks for your help!

Nature
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Re: Daugter just diagnosed - Please Read!

Postby jmarie1210 » Wed Dec 09, 2009 4:19 pm

Hi Nature,

My name is Julie and I'm new to the board as well. My son had surgery 14 yrs. ago and up until this past year, he has had a normal childhood with no restrictions. He's having problems now but that doesn't mean that's the norm. Alot of people have the surgery and never really have too many problems afterward. They feel better and lead normal lives. I think sometimes we see all the problems others are having and we panic thinking that's what our child is going to go through.

Best of luck to you and being hopeful is a healthy, positive way to be! :P
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Re: Daugter just diagnosed - Please Read!

Postby tnajk » Wed Dec 09, 2009 11:49 pm

I'm mostly a lurker here but I just wanted to jump in and say "Hi". We live near Oklahoma City and my 11 yr old son has Chiari. Do you mind if I ask who your daughter's Neurologist and Neurosurgeon are? Just curious.

My son was dx when he was 3 and didn't require surgery until he was 9. Some people that have surgery do wonderfully and others don't. I wish I could tell you everything was going to be fine and dandy and your daughter would be able to get right back to her active lifestyle. I don't want to scare you, but we seemed to have opened up a can of worms after our son's surgery. Quite honestly, it's been one thing after another and our son is currently worse than he was before his first surgery.
You really have to weigh the pros and cons and be sure and get AT LEAST 2 opinions. (Preferably from Doctors that specialize in Chiari and SM. I'll tell you right now, there aren't any in Oklahoma, so be prepared to travel!)

Please don't hesitate to email me with any questions.

~Kristen
tnajk(at)cox(.)net
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Re: Daugter just diagnosed - Please Read!

Postby lttutrow » Thu Dec 10, 2009 8:32 am

I agree, 2nd and even 3rd opinions are important. I think there are sometimes other conditions that are related that they can't really rule out until after the CM is repaired, like high icp. However, my son's Syrinx is smaller after his surgery, so there is at least no further damage to his cord happening. The general idea I keep seeing is that it is hoped that the surgery will prevent further progression of symptoms, and maybe some will improve.
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Re: Daugter just diagnosed - Please Read!

Postby Beach4me » Sun Dec 13, 2009 8:15 pm

HI! My daughter was 13 when she had surgery in NC. It has been a year and half and doing great! She had the headaches, as well as the symptoms your daughter has. She is also very active and is enjoying all the sports to the fullest. In fact, more so because she does not have those screaming pressure headaches after a basketball game. I took her to 3 different docs before deciding. I would only consider a doctor that performs the surgery on a regular basis. For us, that meant Duke. Best of luck!
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Re: Daugter just diagnosed - Please Read!

Postby nature » Mon Dec 14, 2009 9:13 am

Thank You everyone for the information. We are seeing Dr. Mapstone at Childrens in OKC. I know he is the head of neurosurgery at OU but not sure on how many cases of Chiari he has treated. How do I find this information out? I found his Bio and it says he specializes but I guess I need to research further. And since my daughter is on Medicaid since her dad is on disability, I do not think we will be able to travel to get care out of state.
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Re: Daugter just diagnosed - Please Read!

Postby razzle » Mon Dec 14, 2009 12:19 pm

have you checked with the folks at the yahoo Oklahoma group to see how many have used him. You will have to join

http://health.groups.yahoo.com/group/ok ... =126255159

as you can see he is listed with all the boards
http://www.chiariconnectioninternationa ... rlist.html
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Daugter just diagnosed - Please Read!

Postby razzle » Mon Dec 14, 2009 3:34 pm

HERE IS ANOTHE SITE THAT MIGHT BE OF SOME HELP

http://chiari65.bravehost.com/
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Daugter just diagnosed - Please Read!

Postby nature » Thu Dec 17, 2009 9:38 am

Thank You all soooo much for all the information. She sees the NS at 2:45 today. We are all very nervous. She has semester tests today and is going to miss two of them and also miss a basketball game, so she is not very happy about that. But, her principal has re-arrainged her schedule for her and we have lots of people praying. Hopefully the NS will be able to give us some answers and help us move forward.
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Re: Daugter just diagnosed - Please Read!

Postby tnajk » Sun Dec 20, 2009 11:49 pm

So how did the appointment go??
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Re: Daugter just diagnosed - Please Read!

Postby nature » Mon Dec 21, 2009 10:37 am

Well the NS said she does need surgery, which I knew would be the case. I really liked Dr. Mapstone. He spent time with us and answered all our questions. Its hard to believe this is happening to your child, especially when they are so active and full of life. He said she could finish out her basketball season, but he didnt want it to wait til summer. So, we are looking at mid-february for surgery.
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