Relatively new

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

Moderator: pmaxwell

Relatively new

Postby Chatham chic » Sat Apr 26, 2008 9:59 am

Hi! I'm relatively new to this site and new to CM and syringomyelia. My daughter is 3 and was recently diagnosed with CM (13 mm) and SM for which we have scheduled surgery for August 1. Experiencing many feelings at once. She will be at Children's Hospital of Pittsburgh. Been reading several messages trying to learn as much as I can about the condition, what to expect for surgery, and recovery time.

The plan is for her to have a piece of her skull removed, the dura to be sliced, and the first vertebrae to be filed.
This is how the NS described everything to us - which is great, but when I'm on the message board I see medical terms that I think apply. Would like to be more up to date with the terminology so that we (my hubby and I) can be as informed as possible. Can anyone help us with the proper terminology for the procedures she'll have done?

JFYI, she's the youngest of 4. We also have a 14 yo, a 10 yo, a 7 yo (ADHD, Asperger's, and Oppositional Defiant Disorder) and then the 3 yo (CM and SM). Oh yes, and Muddy our Chocolate Lab. We also homeschool all 4 kids and are in the process of moving to a 25 acre farm.

Any help, any questions I should ask...anything...would be greatly appreciated.

Thank you to all.
Chatham chic
 
Posts: 23
Joined: Sat Dec 08, 2007 10:36 am
Location: Pittsburgh, PA

Re: Relatively new

Postby Sara » Sat Apr 26, 2008 11:39 am

Hi and welcome. If you have not already, please request a free information packet from the asap office: http://www.asap.org/infopacket.html

I strongly recomend you sign up to attend a free webinar that covers all the basics about SM/CM. It will be held in June. http://dynamic.asap.org/events/register/2

the blanket term for this procedure is called "a posterior fossa decompression" and it can encompass all or some of the procedures your daughter is having. filing the veterbra is often called "laminectomy". Opening the dura can also entail using a patch, or just leaving it open. If it is closed, you might hear terms such as: bovine patch, cadaver patch or auto patch- which is your own tissue.
I hope this helps.
Sara
Holly's Mom
Sara
Site Admin
 
Posts: 572
Joined: Wed May 16, 2007 1:14 pm

Re: Relatively new

Postby Sara » Sat Apr 26, 2008 11:40 am

P.S, Also- try and make it to the conference in July. You will learn so much and meet other people and talk to them and it will help you tremendously before the surgery. http://www.asap.org/2008/2008-conference.html
Sara
Site Admin
 
Posts: 572
Joined: Wed May 16, 2007 1:14 pm

Re: Relatively new

Postby Chatham chic » Sat Apr 26, 2008 12:08 pm

Thank you, Sara! Actually, that's my daughter's name with the CM/SM. She's with an 'H'.
I signed up for the information packet and printed out the info. about the conference to take with me to my oldest daughter's softball practice. With the move to our farm and our older two daughters will be at church camp that week, so I'm not sure if the conference is feasible at this point, but we'll see. Thank you for the info., though!

Is there a term for the removal of a piece of the skull?
What can I expect for recovery time?

God bless!
Chatham chic
 
Posts: 23
Joined: Sat Dec 08, 2007 10:36 am
Location: Pittsburgh, PA

Re: Relatively new

Postby brianfsmom » Sat Apr 26, 2008 9:21 pm

Hi Chatham Chic,

Welcome, and best of luck to you and your daughter on August 1!

Here are the technical terms, as I recall them:

posterior fossa decompression, including laminectomy of C1("filing" the vertebrae, sometimes includes more than just C1); craniectomy (removal of the piece of skull) and duraplasty (this includes a graft to the dura; not sure if that is what your doctor meant by 'slicing' - some sort of just score into the dura after removing the bone; and then there is that "fibrous band" removal someone else posted about, another variation on the duraplasty)

I think I got them all right! It's been 3 1/2 years since we were in your shoes!
brianfsmom
 
Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm

Re: Relatively new

Postby Chatham chic » Sat Apr 26, 2008 9:32 pm

How is your child doing now?
How old were they when they had the surgery?
Were they experiencing any symptoms before the surgery?
Did they have to have the surgery over again?

As you can see, we have many questions!
Chatham chic
 
Posts: 23
Joined: Sat Dec 08, 2007 10:36 am
Location: Pittsburgh, PA

Re: Relatively new

Postby JWatson » Sun Apr 27, 2008 4:21 pm

Hey,
My son Tyson 2 (will be 3 on 5/15) had the surgery on Dec 28th at Duke by Dr Fuchs. He also has CM1. Tyson had Headaches on a daily basis. We were stunned to find out that he had a chiari malformation.............I remembering saying to the nurse he has what??!! It all happened so fast that I did not have time to research and to be honest I was scared. He was such a trooper during his surgery and post op. We stayed 24 hours in Picu and then we went to the floor. Our surgery was done on friday and we went home on monday. Once we were home the hardest part was making him rest and take it easy. He wanted to do the things he was doing before surgery and he just could not. I was so shocked at how fast he bounced back. I remember taking him to a basketball game to see our babysitter play ball, he was dancing to the music and one of the older ladies asked her daughter in law........is'nt that the child that just had brain surgery! He did continue to have headache post operative, but thank god we have not had any in about 1 month!! Our 1st post op MRI was great too! If you have any questions, I will be glad to try to answer them. I hope your little one does as well as Tyson has.
JWatson
 
Posts: 12
Joined: Mon Jan 21, 2008 4:35 pm

Re: Relatively new

Postby brianfsmom » Sun Apr 27, 2008 6:25 pm

Hello

My son was 9 when he had the surgery. He's going to be 13 in August and he has NOT ::knock wood:: needed more surgery. He also has a syrinx, and it did shrink, but it has not gone away. He does have some residual symptoms of weakness and a hand tremor, but I am not even sure that the hand tremor is related to the chiari and SM because largely, his syrinx is lower down and wouldn't cause symptoms in the hands and arms. I hesitate to allow him to try to build the muscle by lifting weights, as this is usually not advisable.

But I am getting off-track. His pre-op symptoms did not include headache. He had stiffness in his legs, leg pain, numbness in his hands, and rapid reflexes. I didn't know about any of this, other than the leg pain. I only took him to the doctor for the hand tremor, and I will never, ever forget that day. I can't remember most of the days of my life, yet I remember that one like it was yesterday. Oh, and the symptoms have resolved.

Brian had surgery on a Tuesday morning and spent two nights in the PICU. But his surgery was mid-day on Tuesday, so he didn't get to the PICU till late that night. The second night was a formality, plus he was very nauseous from the medications so I was nervous about having him moved. Then he spent one night in a regular room, and came home the next day. I must add that he did have a CSF leak and a pseudomeningocele (pocket of CSF where it should not be) formed, about five days post-op. But this resolved without much medical intervention within a few weeks, and today, he is none the worse for it. He missed about three weeks of school and was back at baseball for opening day. I've been following these boards ever since, because I was so taken aback by the events of that period, and I know the nature of chiari, so I want to reain informed - just in case - but I hope never to travel that path again - although I must say, once we went through it, it was nowhere near as terrible as we had feared. A good surgeon is a key factor.

Hope that's helpful. Ask all the questions you like. That's what the board is for.
brianfsmom
 
Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 6 guests

cron