Very new to this

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

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Very new to this

Postby jennasmom » Fri May 18, 2007 10:46 am

Hello,

I am new to all of this, my 8 year old daughter broke her arm on 4/17, while waiting to get casted a wonderful nurse noticed she her shoulders were uneven and suggested an xray for scoliosis. She was diagnosed with scoliosis of 50.5 degrees. 1 week later while reviewing the MRI were sent immediately upstairs to see the Ped. Neurosurgeon (a little overwhelming). We were told our beautiful baby has Chiari 1 and Syrngomyelia. We are waiting for an MRI of her brain and according to this doctor will need to have decompression surgery with a shunt within the next 2 months. I am absolutely terrified for my daughter and am trying to learn all that I can. If anyone is out there who can offer words of encouragement from their own experiences I would be so grateful. Also, I need to know what I should be doing.

Jennas mom :
jennasmom
 

Postby haylb » Fri May 18, 2007 1:10 pm

Hi there

We are in a very similar situation to you -my daughter is 7.
She was diagnosed with scoliosis almost a year ago,her curve is about 65 degrees, she had further tests and mri's to rule out underlying causes -these tests didnt rule those things out though -they confirmed amy has chiari malformation and syringomyelia.
Amy was due for decompression surgery on may 8th but it was cancelled and has been rescheduled for next wednesday.
So perhaps I can answer some of yuor questions now and maybe some more after next week.
Are you in the united states? -we actually live in the uk
What treatment is your daughter going to get for her scoliosis -amy has been braced for 23 hrs a day from July2006 -we had x-rays 2 months ago and her curve has remained stable at 65 degrees.
Any questions you have I will try to help but I'm still learning about all this myself
Hayley
haylb
 

very new to all of this

Postby jennasmom » Fri May 18, 2007 1:22 pm

Hayley,

Thank you so much for responding so quickly. Amy's diagnosis is very similary to Jenna's. We have not chosen an option to treat the scoliosis just yet. The spine doctor wants to brace her, as Amy is, for 23 hours a day. However, in the little bit of research I have completed, I am hoping that any decompression surgery may halt the progression of the scoliosis and we can then look at corrective surgery when she is a little bit older.

As I mentioned we received this diagnosis only 2 days ago, and prior to that we were just becoming accustomed to the idea of helping her through the scoliosis. The first doctor we have seen wants us to get an MRI of her brain, probably sometime in the next 3 weeks, this seems like an awfully long time to me. Jenna, thankfully, with the exception of the scoliosis is symptom free although according to the radiology report she has a "large syrinx" measuring 15mm in diameter. She of course also has the Chiari 1 and a 50.5 degree curvature of her spine. I know we need a 2nd opinion, and we are trying to find another doctor. The doctor we are seeing is literally the only Ped. NS in the state of KY.

I'm not even sure what I'm supposed to be doing right now. If you don't mind maybe you could tell me how you came to decide on a doctor, the proceedure etc. How and when did you present all of this to Amy? What has the doctor said about possible complications, recovery etc?

Thank you again, it is nice to speak with someone who is experiencing this as well.

Lisa
jennasmom
 

Postby haylb » Fri May 18, 2007 1:50 pm

Lisa

Our procedure for treatment could be quite differnet to what yours will be as in the uk we have a national health system so all treatment is free of charge but this makes the system very slow.
Amy has had 2 mri scan -the first of her spine (that was august 2006), chiari was diagnosed then but we waited 2 months to see a neurosurgeon then a further 2 months for another mri -this time of her brain.
It was after her second mri that we were told she would need the decompression surgery, amys syrinx is the full length of her spine and is the full with of her spine in the top part of her back.Fortunately, as your daughter she has had no other symptoms other than her scoliosis.
We too have been told that after the decompression surgery along with wearing her brace the progression of her curve will hopefully be slowed down and she will have spinal fusion when she is older -our stories are very similar!
Amy knows the basics of whats going - without wanting to scare her but she knows her brain is slightly too big and pushing down on her back which in turn has made it curve.
I am very anxious about the decompression surgery next week but i know its for the best and just have to hope it all goes smoothly.
I only just joined this site myself yesterday and I'm not sure if they allow the exchange of email addresses but I will try and find out then perhaps I can contact you after the surgery next week and tell you how it went so your a bit more prepared.
I would think your daughters treatment plan will progress quicker than amys had because of the reason i mentioned before about us been in the uk
Not that i havent been satisfied with the treatment we have been given because I am but all the waiting is very nerve racking
Hope to hear from you soon
Hayley
haylb
 

Postby jennasmom » Fri May 18, 2007 2:03 pm

Hayley,

I can only imagine how anxious you must feel. I am trying to keep myself together so that Jenna does not see how truly scared I am for her.

How is Amy holding up through all of this? As I mentioned, I have not said anything to Jenna just yet, I am hoping to speak to the doctor again before we have to explain anything, I can't imagine what will go through her mind.....

I will keep, you, Amy and your family in my prayers, quite honestly that is the only thing keeping me going right now.
Also, if you need a sounding board, I know I have found a little comfort in emailing with you now, just to know we aren't alone. Please email me anytime, I will check into the site many times a day.

Lisa
jennasmom
 

Postby haylb » Fri May 18, 2007 2:10 pm

I'm so glad to have found someone else in such a similar situation -It is good to talk to someone apart from our immediate family and friends.

Amy has been a little trooper through all this -we are amazed at how well she has coped because when she was first diagnosed she was very shy and extremely clingy and we were very worried to how she would react but she has been great - the only tears we have had were two weeks ago when she had her pre-op appointment and they had to take a blood sample -she had never had blood taken before so she didnt know what would happen but we had a few tears and that was that.
She has taken to wearing the brace well and not once has she said im not putting that on!
I'm not sure how she will get on at the hospital next week but we have assured her me or daddy will be there with her all the time and at the moment she seems quite relaxed about it

Hayley
haylb
 

Hi

Postby Sara » Mon May 21, 2007 7:48 am

Welcome to ASAP. Typically in a case like this, with a severe syrinx and curvature of the spine a Chiari decompression would be recomended. A shunt is usually reserved for a last resort if the syrinx does not resolve after decompression. I think you are doing the right thing looking for a second opinion, and you made need to leave the state.

Did you request a free information packet from ASAP? Read through the Expert advisor articles on the ASAP.org site, and also look through the selection of DVD's and video's, they are very informative and so is the conference notebook.

My daugher is 12 and has already had 12 surgeries. I know it is tough but these kids are also remarkable. You can email me at sarap@cfl.rr.com

Sara
Holly's mom
Sara
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Postby Mayzoo » Sun May 27, 2007 3:53 pm

Sorry you had to join this group--my daughter was diagnosed almosted 4 years ago.

Don't let anyone RUSH you into a decision. Your daughter's findings were incidental, and as you said she has no other symptoms you are aware of (other than scoli, syrinx). I am NOT saying do nothing or wait a year to do something--just don't allow anyone into pressuring you into making a snap decision about brain surgery. Get a second or even third opinion. Your daughter is the same today as she was yesterday, meanig nothing critical happened to require snap medical decisions. These conditions will not all the sudden begin to deteriorate rapidly just because you found out about them. I have spoken to many people who felt rushed to make decesions, and then regretted them. Do your research, ask around, get other opinions. Get doctor referels!! Ask how many decompressions has he done? Make an educated decision.

She will most likely need the surgery, I am not saying she won't. I am just saying---don't make any decision you are not comfortable that you have researched. Look into what the surgery entails. Ask all the questions you want to. Will she need a dura patch? What kind does the doctor use? What is the docs approach to pain managment after the surgery? If they want to use a shunt what brand will they use? What will be the process involved in adjusting the pressure later on? What do they expect to see improve (scoli, syrnix) wise after the surgery? What is her herniation level now? Have they done a CINE MRI yet (tests fluid flow in betweeen the brain and spinal cord)? ETC.....

Do your research however you can access it. Then make your decisions. Not sooner just because some doctor says it is a convenient time for him to fit it in.
Mayzoo
 
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Postby mamashu5boys » Tue Jul 17, 2007 5:56 pm

Hello,
My son is 3 and has congenital scoli at 60 degrees and a 9mm syrinx along with other birth defects. I’m interested to know if all of you dealing with scoli know weather or not it’s Congenital or idiopathic?
I know that congenital scoli is caused by structural problems with the spine and or ribs, so a brace does little or no good except for support after a surgery. For that reason my son has not been in a brace, he has had a surgery already for his tethered cord.

If it has not already been done I recommend that all of you have an MRI done making sure it goes low enough to detect a tethered cord if present. If you have any more questions about scoliosis treatment or you just want to read what’s going on with other scoli kids I recommend you join my yahoo group.
http://health.groups.yahoo.com/group/Co ... =136818165

This group is for congenital scoli but many of the people here have lots of information on all reasons for scoli. Also the home page has many sections with links for good information. I remember when I first learned my perfect looking son had all sorts of birth defects, it was a long overwhelming process to get it all sorted out. The learning and researching and waiting never really ends but it does get easier. Now all this medical stuff is folded in to our life instead of taking it over.
Best wishes,
Tiffany
Mama to 5 beautiful redheaded boys
http://babyhomepages.net/5smurfyboys/index.php
Rory age 14, Evin age 10, Brandel age 6, identical twins Keegan and Conley are age 3. J
Keegan has progressive congenital scoliosis at 60ish° a hemi vert at T-5, two fused ribs, several vertebrae fusions, a rib hump measuring at 14+, a solatary left kidney, scatterd areas of abnormal signal within the brains white matter, sacral hypogenesis, L2 conus with a filar lipoma. He also has a syrinx causing lower limb nerve damage, that we hope will clear up on its own after his tethered cord release surgery on Oct. 18, 2006
mamashu5boys
 

Postby angie7 » Tue Jul 17, 2007 8:50 pm

I agree with Mayzoo...Dont let anyone RUSH you into a decompression surgery. That is a major surgery not one to be taken lightly. And make sure you have answers you are comfortable with BEFORE surgery. Have any of you thought about seeing an ACM/SM specialist? I have heard of so many small town docs messing up a decompression surgery so bad that a specialist had to "re-do" the work. There are many on this site (over in the main part) that can relate to botched surgeries. I would seriously consider finding a specialist. There is a medical advisory board on the main page of this site with a list of experts and where they are located. I am sure many of you will have to travel, but believe me it is well worth it to talk to a leading expert on these rare conditions.

I live in Indiana, and I see an ACM/SM specialist in Colorado. It is well worth the trip, trust me!

I am so sorry that your children have these conditions. I cant imagine the heart break. I am crossing my fingers that my girls will be okay...but if not, Dr Frim will be their doctor....
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
angie7
 
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