Decompression surgery recovery input???

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

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Decompression surgery recovery input???

Postby JenandLuli » Mon Apr 02, 2012 6:31 pm

So.... now that the reality of my daughter getting Decompression surgery is more of a reality, I've been looking into it.

Can I get some REAL stories of recovery? How was it in the hospital? What did your kids experience in those first few days, weeks, etc.

I want to make an informed decision if this is the best for Luli. And I want to know what she will be going thru.

Thanks in advance!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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JenandLuli
 
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Joined: Thu Sep 06, 2007 10:58 pm

Re: Decompression surgery recovery input???

Postby cari » Wed Apr 04, 2012 12:02 pm

Jen,

My daughter had decompression surgery when she was 4 years old. The operation was done @ Kaiser LA by Dr. Cahan, who is now retired. BTW- we are seeing Dr. Mark Fedor now and so far I like him. Also, we saw Dr. Lazareff for a second opinion as well. The surgery and recovery went FAR better than I expected. After reading so many different stories, I really expected the worst. We made all kinds of preparations that were unnecessary.
The surgery lasted about 4 hours and I was amazed at how great she look in the recovery room. She had on a neck brace, but otherwise had good coloring, etc. During the first 2 days the biggest problems were pain and vomiting. The pain was easily controlled with meds which were on standing order by the ns. By day 3 she was on plain Tylenol (not with codiene). The vomiting was not well controllled. They tried all different types of meds and even administered them in different sequences, but nothing helped. Dr Cahan also had a CT done to rule out complication with the surgery. She refused to eat or drink anything. The anesthesia med makes her very sick. I already knew this because she gets pretty sick at each MRI. By day 4 the pediatrician decided to so something different and gave her some steriods. That did the trick and she stopped vomitting and began eating. On day 5 she went home.
Literally, the first day home she was running and playing. My husband even caught her getting ready to jump off the back of the couch. By the time she came home she had stopped taking the Tylenol. No pain, no discomfort, no complaints. It has been smooth sailing since then.
We had bought soft button down pj's and tops so that we wouldn't irritate the incision by putting clothes over her head. We had also got a bed tray for at home and took off our acrylic nails to make dressing changes easier. For us we didn't need it, but sometimes there is more peace of mind in being prepared.
We also stayed at the Ronald McDonald house a few blocks away. Of course, I stayed in the hospital always, but occasionally went to the Ronald McDonald house to shower.
Cari
cari
 
Posts: 13
Joined: Thu Nov 04, 2010 8:43 am

Re: Decompression surgery recovery input???

Postby JenandLuli » Thu Apr 05, 2012 11:48 am

Wow Cari! I didn't realize you were Kaiser LA too. Thanks for your input!
I'm glad to hear that the recovery was no so bad - dispite the first few days.

I really liked Fedor too!!!

What was your dd's issue - Chiari? My dd just has idiopathic syringomyelia... so no one knows what to do with her.

I'll let you know if anything changes here... but I'm pretty disheartened at the moment!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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JenandLuli
 
Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: Decompression surgery recovery input???

Postby cari » Thu Apr 05, 2012 12:58 pm

Jen,
My daugher has 13 mm Chiari and syringomyelia. The decompression surgery has resolved nearly all the spinal syrinx. We go at the end of this month for another MRI to check the status.
I think in general, kids recovery much quicker from surgery than adults. It's important to remember that when reading some of the stories of really difficult post-surgery recoveries.
Best luck to you and please let me know if I can help or offer any more information.
Cari
cari
 
Posts: 13
Joined: Thu Nov 04, 2010 8:43 am


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