What symptoms did your child have after surgery?

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

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What symptoms did your child have after surgery?

Postby Chrystal » Mon Feb 18, 2008 9:40 am

Good Morning,

My 7 year old daughter had decompression surgery for CM not quite 4 weeks ago. I wanted to know what symptoms, if any, your child continued after healing from surgery? Does your child have symptoms that are chronic in nature?

Thanks - Chrystal
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Postby emarismom » Mon Feb 18, 2008 11:31 am

My daughter has had little to no symptoms post op, except for scoliosis, which is not as bad as it was pre op :D

She was 5 when she had her decompression and is nine now!! Needless to say, I have been very happy with the results. (Now if the scoli would just GO AWAY :wink: )
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Postby JWatson » Mon Feb 18, 2008 9:17 pm

My 2 year old son had decompression surgery on 12/28/07. He has done well. He has started having some headaches, but we went back to Duke today for a MRI and everthing looked great. He did have some fluid build up, but Dr Fuchs said that was normal due to the fact that it had collected in the area where the bone was taken to make the patch (I am sure that this is not the correct medical terms). He said it should go away on its own, but they will keep their eyes on it. They think this is the reason for his HA's. They are not bad all the time, so that is why they want to watch and see if it corrects itself on its own. I have to keep a log of them. They will do another MRI in 6 months. It has been a very scary journey, one that I hope I don't ever have to do again. We did have a wonderful doctor and that makes things much easier.
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Thanks for reply

Postby Chrystal » Tue Feb 19, 2008 8:35 am

Thank you for your replies. I hope you see improvement in your daughter's scolio - and that your son's headaches go away as the doctor believes they will. You are right this is a very scary process.

My daughter is doing well considering what she went through before the surgery. But I am still very watchful of her complaining of double vision (Seems to be diminishing some) and of her throat hurting. Her throat does not hurt like a scratchy throat but she says it is crampy -the sharp pain comes and goes. Sometimes it is making it hard to eat because she says it feels tight to swallow. I know this is a classic chiari symtoms. I am just waiting to see what a few more weeks will do but I do not want this to affect her gaining back the weight she lost before and around the surgery - she is seven and was down to 38 pounds. Did your children complain of throat pain?
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Postby lalaswihart » Tue Feb 19, 2008 11:04 am

My Daughter did, she had the exact same complants and they said that it was b/c not only the chiari, but also a retroflex adontoid bone and an enlongated brain stem do to an occult tether cord, all of which was found by doctors at the Chiari Institute where we went for a second opinon after my daughter had already had 2 surgeries here in Tx with another Dr.

So we had 2 more surgeries at TCI in New York and Now almost all of her symptom are almost gone, and really she has very few and far between now :D which is so awesome.

There are things that were missed and these cause her problems, I am glad we sought out a Chiari Specialist, It was very scary on how bad she had become and we were very scared an unsure if she would ever be ok.

It is not that our local Dr was bad actually he is a great surgeon, but he is not a Chiari Specialist, meaning he does not deal with Chiari exclusively, and for my daughter this was a bad thing b/c he missed some very important things.

I am not saying this is what is going on with your daughter, I am only saying that with the 2 surgeries my daughter had at the TCI, her normal life has been returned she has no more double vision, no more throat pain, no problem swallowing, and best of all no more Chairi Headaches!!!!!! and we are only 4 months post op, she is riding a bike again and happy and I can not express how this makes me feel :D :lol: :D :lol:

I hope this helps and I will pray for your daughter and you!
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
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Postby youngwife » Wed Mar 12, 2008 12:19 am

Chrystal,

I'm sorry your daughter had to go through all of that!:(

My daughter complained of a similar throat pain. She wanted to drink constantly. It went away after 4-6wks.

She is still having some vision trouble, but, her optometrist told us that it could take up to 6 months for her vision to go back to "normal" or even better then the old normal. (She's slowly seeing that her eye doc was right ;).)

She occasionally has "headaches". They're different from her headaches before surgery. The best way for her to describe it is, "puzzle pieces not quite fitting together back there," if that makes any sense at all!! :lol:


As the weeks and months went by, she noticed things started to ease up, and 85% of the symptoms totally went away. Yes, there are still things now and then they may occur. But, you can never completely cure Chiari, just treat it.

I hope your daughter has a very fast recovery! :)
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Postby brianfsmom » Wed Mar 12, 2008 6:44 am

Hi,

I just wanted to say that sometimes the throat pain can be from the tube in the throat during surgery - although after this much time I would think this would have eased up.

Like most here, my son has no new symptoms since surgery, although he gets the occasional headache, brought on by lack of sleep, stress, heat, or brace adjustments to his teeth :-)

He did have a bit of a post-op complication which included aseptic meningitis and a CSF leak. During that time, he had worsening headaches and was put on steroids, which helped. Once that cleared up, he recovered well. This was three years ago.

I hope your daughter feels better soon. Are these new symptoms for her?
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