3 yr old son having decompression Apr 22-need advice/support

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

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3 yr old son having decompression Apr 22-need advice/support

Postby loriwithtriplets » Thu Apr 10, 2008 11:43 pm

My son Brady was diagnosed with Chiari last June when they did an MRI to see why he was delayed with gross and fine motor and had right sided weakness. He also has SM (C5-T4, approx 11mm) and has absent CSF flow dorsally and mildly attenuated flow ventrally. He was scheduled for surgery last July but we ended up postponing it. Our surgeon, Richard Ellenbogen hosted the ASAP conference here in Seattle the same week that his surgery was supposed to be so my husband attended and learned so much. After the conference, we took Brady to a genetics Dr. who specializes in Ehlers Danlos and he feels that he has a form of the hypermobility type. In November, we had a hole in his heart closed with a helix device to protect him from stroke during surgery (he has already had one which is why they think he has the right sided issues). He needed to be on aspirin for 6 months after that procedure.....so here we are 1 1/2 weeks away. I am beginning to panic again. My son turned 3 in March and I haven't heard of children this young having the decompression surgery. Even Dr. Ellenbogen said he hasn't done very many on this young of a child. We have been told by 3 different neurosurgeons (ours and 2 in NY) that this needs to be done sooner rather than later. Brady has major feeding issues and has been fed through a g/j tube since he was 4 months old. He does seem to be symptomatic sometimes at night with severe headaches and vomiting (he had one last night and was just holding his head screaming, vomiting and inconsolable). He is also delayed in speech, gross and fine motor skills.
I would love to hear from someone who has gone through this. I am feeling so anxious about the surgery. Also, Brady is a triplet and we have another child who is 6. I'm worried about bringing him home from the hospital to the chaos that is our life. Dr. Ellenbogen says he will be in the hospital 5-6 days...has that been most people's experience? I'm thinking about sending the other two 3 year olds to my parents in Oregon so it will be quiet and peaceful around here when he gets home.
I would greatly appreciate any words of wisdom, ideas of what to expect after surgery, etc.
Thank you so much!
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Postby lovemyblessings » Fri Apr 11, 2008 1:20 am

My 16 month old has been decompressed twice (at 10 months and 14 months). I also had sons decompressed at almost 4 and at 25 months. All of them went home from the hospital in about 72 hours with only Tylenol #3 and Motrin for pain. Every neurosurgeon does things a little differently, but three of our surgeries were a posterior fossa decompression with duraplasty and a laminectomy. One also included cauterization of the cerebellar tonsils. One of the surgeries was just a bony decompression.

Recovery was pretty similar for all of them, but my oldest child to be decompressed was the most afraid to turn his neck afterward. I'd suggest asking for a PT to see your child in the hospital to work on range of motion exercises once you get home. If you think it would be helpful, you can also get PT outpatient afterward.

LMK if there's anything you have questions about that I might be able to help with.
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby Kristine » Fri Apr 11, 2008 8:24 am

My 5 year old daughter just had her decompression in Feb. The time in the hospital was pretty rough. She wouldn't move her head at all. It stayed turned all the way to the right and then with her chin down almost touching her shoulder. I was very concerned about range of motion, but our NS just kept telling us that she is fine and she will move her head when she is ready. Although I questioned that philosophy at the time, the NS was right. Emily started moving her head the day we came home. She had the surgery on Monday and she came home that Friday. The hospital stay was so tough that I thought recovery would take months. It is amazing how quickly they recover in their own environment. The day she came home was the first time she sat up since surgery. We called some cousins and friends over to help motivate her and it worked. Emily also has a twin brother and having him around helped her as well. Within a week of surgery, she was already up and playing, but was cautious with her head movement. Within two weeks, she was probably 90% back to normal. We did deal with some nightmares for a while, but overall our experience was a good one.

I kept up a blog during our ordeal and if you would like to read it you can go to www.caringbridge.org/visit/ebbert and go to the journal history. Emily's surgery was Feb 4 and so you can go back to that date and read from the beginning. I also made a video montage of her hospital stay. Click Here to watch it.

Good luck! I know how anxious you are feeling right now and I had all of those feelings myself. I am happy now that we did it and it is past us. It won't be long and you'll be past it, too. (((HUGS)))
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Postby angie7 » Fri Apr 11, 2008 8:57 am

I do not have a child with CM but just wanted to send out {{hugs}} to you with the upcoming surgery.

Also I am familiar with multiples, I'm a mother of 2 year old twin girls. Honestly, I think I would keep the other 3 year olds at home. It will be chaotic, but we know the bond that multiples have and I would think the stress of not having his siblings around would be highly stressful for him not to mention his other siblings. Kids bounce back pretty fast from something like this and I think he will do just fine with this other siblings at home.
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
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Postby JWatson » Fri Apr 11, 2008 9:31 am

My 2 year old son had decompression surgery on 12/27/07 for chiari 1. He will be 3 may 15th. Dr Fuchs @ Duke done his surgery. He had it done on friday and went home on monday. We had to spend one night in PICU and then we went to a regular room. Tyson done great, considering what he had been through. The hardest thing for us was trying to get him to rest once he got home, after a few days he wanted to run, jump and do things he was used to doing.....and he could not. The best advice I could give you is to get him moving his head and neck. With Tyson we found out on Dec 20th that he had a chairi, went to Duke on the Dec 27th and had surgery on the 28th, so we did not have much time to really think about what was going on. I hope everything goes well for your son.
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