Any advice for my daughter's upcoming surgery?

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

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Any advice for my daughter's upcoming surgery?

Postby Kristine » Tue Jan 15, 2008 10:54 pm

My 5 year old daughter will be having her brain decompression surgery for CM in a couple weeks. I am nervous, anxious, upset, and scared. Is there any advice you can give me to make this easier on her?
Kristine
 
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Postby brianfsmom » Wed Jan 16, 2008 12:11 pm

Hi Kristine

I think it will be harder on you than it will be on her.

Has she been for a tour of the hospital? Really it is not so bad for the kids, as they sleep through the surgery and wake up on medications; bring a favorite blanket and pillow (we used those beaded ones to prop the head), stuffed animal. Not too much, though.

At first she won't feel much like playing, so she will just want comfort. By the time she feels up for play, they will be sending her home.

Also remember button-up PJs - much better than dressing like a hospital patient.

And try not to let her sense your anxiety - this was the hardest part for me!

Good luck!
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Postby JWatson » Mon Jan 21, 2008 4:50 pm

Kristine,
My 2 1/2 year old son, Tyson had this surgery on on Dec 28th. He did really well. He had a CM 1. We were in PICU for 24 hours and then we were moved to room for 2 1/2 days. We had our surgery done at Duke University by Dr Fuchs. The best thing you can do is after the first 24 hours be sure to get her to move her neck and head. Dr Fuchs preached that. If they do not it will cause muscle spasms. I did not want Tyson to have to go through that too. The hardest thing for me had been trying to get him to rest. How do you make a 2 year old rest??!! He will 4 weeks post op on friday and I must say it has been easier than I thought. We go back on Feb 18th for an MRI to make sure everything is healing and ok. How did you find out about your daughters CM? I had never heard of it until Tyson. Please feel free to ask me any questions?
Jenny
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Postby Beach4me » Mon Jan 21, 2008 9:03 pm

If you don't mind me jumping in here...

At what point does a Dr decide to do surgery?

My 12 dd has her MRI tomorrow CM 1.
Beach4me
 
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Postby Kristine » Tue Jan 22, 2008 12:53 am

Thanks so much for the advice. Emily's sugery is scheduled for Feb 4. She will have it at Sacred Heart Hospital in Pensacola, FL and Dr. Alexa Canady will do the procedure.

Regarding the decision to do surgery, we are following the advice of three different doctors. Emily has been suffering from these horrible headache episodes for the past few years. Emily also has hydrocephalus and has a VP shunt. She had a shunt failure in 2005 and went a full week in failure before a revision was done. Her symptoms began almost immediately after her revision. Her current neurosurgeon feels like Emily's chiari was acquired because of the extra pressure she had during her shunt failure. Her headaches episodes, although infrequent, are pretty extreme in nature. After being put off by her old neurosurgeon and neurologist for far too long, we finally went and found a new set of doctors for another opinion. She had an MRI flow study done that showed that she has a total blockage of CSF on one side of her spinal cord. Because of this, and because her symptoms are pretty extreme, surgery is unavoidable. The thing I struggle most with is that when she is feeling good, she is REALLY doing well. It is hard to think about sending what appears to be a healthy five year old little girl into such an extreme surgery. But on the other hand, when she is in the middle of one of her episodes, we realize just how necessary the surgery really is. We are very anxious about it, though, and are really dreading it.
Kristine
 
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Postby JWatson » Tue Jan 22, 2008 9:03 am

Kristine,
I know how you feel. Tyson's situation was very strange. One sunday night he started stuttering (this alarmed me because Tyson is very advanced in the talking and speech department). The next morning he woke up with a headache and still stuttering. We went to our family doctor, which is a friend. Tyson Headaches were not really bad, but he knew I was worried so he sent us to a neurologist. The neurologist said she did not think the stuttering was anything to worry about and his headaches did not seem to be real bad, but she would do an MRI to make sure everything was ok. That was when we found the CM 1. We went to Duke the following thursday and the surgean said he needed to have surgery. His spinal fluid flow was not good. He had already developed a cyst on his spine bc of the fluid flow. He told us he would be out of town for the following week, but we could have it done in about 2 weeks. Something was said about him being in surgery the next day, so we ended up coming home and going back friday morning. Talk about quick!! We did not have time to think about it, but I would not have had it any other way. What is your daughters name, I would like to pray for her.
Jenny
JWatson
 
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Postby Beach4me » Tue Jan 22, 2008 10:53 am

Her name is Becca. And I would appreciate any and all prayers. We have been in constant prayer that God would provide all that she needs. Becca had a very difficult birth and in fact they were convinced that she had died before they were able to deliver her. But God protected her and she has really flurished until this.

Her MRI is at 12:00. We live in the Triad of NC. I will let you know how it goes.
Beach4me
 
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Postby JWatson » Tue Jan 22, 2008 5:04 pm

Becca's Mom,
Do you live in NC? We live in Scotland Neck NC, which is about 30 miles east of Rocky Mount. Our neurologist was in Greenville, but she sent us to Duke for our surgery. I would highly recommend Dr Herbert Fuchs. He does have a partner, Dr Grant. I met Dr Grant while we were in the hospital and I liked him too. How old is Becca? Prayer is so powerful. It amazed me the cards and emails that we got during Tyson sickness and recovery, from all over the place. Please feel free to ask me any questions, I will try to answer them the best that I can.

Jenny
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Postby Beach4me » Thu Jan 24, 2008 7:03 am

Jenny, my dd is 12. We live in Kernersville (outside of Greensboro). Her MRI was positive for CM1. Her Peds Dr. is going to refer us to someone at Wake Forest (Brenner's Children's Hospital). So I will see how that goes. However, I am all for finding the best Dr. for her. So, I may be needing more info on the Drs you suggested.
Beach4me
 
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