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5 yr old with chiari

My 5 yr old little boy was diagnosed about a month ago had the surgery on december 29th. He is doing ok but what should I expect? He doesn't want to move his neck much.....when should I insist? Do I bring him to physical therapy or wait and see if he will start to do himself? I am so scared. I wonder all the time if the headaches were really bad enough to put him threw this painful surgery and recovery....but he also has 2 big syrinxs and also a chain of them further down spinal cord. Before we started daily headaches were only symptom he had....at least all I know of he is only 5. Dr said things will get worse if we didnt have surgery. This is just so scary.....is there anybody else who has a little one? How are they? Is he really going to be the same little boy as before? He was always so happy!!
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9432311 tn?1432825085
The point Selma makes above is the most important thing for you to think about. Your calm state will begin to move your son to a calmer state. I wonder if he knows of such a deep love he has from his mother. Your posts about your son inspire me. Be confident that your love and attentive care goes such a long way to his overall healing.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi yes that is one of the typical patches used  bovine, cadaver, synthetic and tissue harvested from the patient which is what I had done since I have EDS as well as Chiari,,,,

My nose was very runny as well post op....in fact it always felt wet post op at  first but it was the oxygen tube below my nose causing it to feel that way I was told....lol...but I did have the runny nose when I got home.

Try to relax more and you will see you DS relax along with you.
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Avatar universal
I can't tell all of u how much it means to me that u are taking time out of your busy life's to talk to me. He is doing pretty good the last 2 days up and moving alot more. He has a runny nose and it scares me because that is what they told me to watch for. But he seems happy again! They told me the patch they put inside his head is made from cow heart.....any of u heard anything about it? That sounds so scary! How can part of a cow heart be ok inside of your head??? I can not tell all of u enough how much it means to me that I can talk to u all about everything we are going through....one scared mom to another!!
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10169340 tn?1415846161
My heart goes out to you and your baby boy!!  Selma has given you the best advice, but if you're pediatrician does not want to give you a new prescription for his pain meds.can you call the NS, see if they can fax in a script, or have your pediatrician call the NS.... I will say to as Selma and Elisaandbucky said , you did the rite thing because of his age he will recover better than all of us... My daughter was 18 yrs old when she had surgery for a very large syringo...the NS at the time had told me if we did not catch this in time because it was on her spinal cord and it was so big that paralization could have occurred and there was no going back with that... So don't second guess yourself , a mothers instinct is almost always the rite one.
I also wanted to tell you that I am 3 weeks postop of the decompression and a spinal fusion and, my family always notices when I am more in pain because I have the same habit as your son ,I raise my rite shoulder towards my head when it hurts more ,because it feels comforting to the pain... It take along time to recover...but with your loving support your son will be back to his old self soon ,but you need to give it the rite amount of time... It's been 17 yrs since my daughter had her surgery and she is doing fine!!  Keep your faith God will help you both thru this , and keep us posted
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620923 tn?1452915648
COMMUNITY LEADER

  Pain meds are needed this early on.....and as I said should be kept to a schedule to keep ahead of pain otherwise they do not work to full potential.

  He does need to be up and moving...walking is best along with neck exercises given for this surgery.

It is important that he does move the neck to prevent the muscles from getting tight and healing in a position that is not wanted.....

  Try to get him to be aware he is holding that left shoulder higher...and to relax it....not so easy with a child his age....but  do use heat to help him relax those muscles and  be willing to move the way he needs to.
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Avatar universal
Thank u both! I am so worried about giving my son the pain meds. The doctors said they won't renew his prescription and there are times when I know the pain is bad and does need them. We live 3 hours away from his ns so would have to go to his normal pediatrician and i am having a hard time with that because they obviously don't know much about chiari......they took a year before referred us to mayo clinic. If I give him meds he will move arounf and exercise so much more. It hasn't been 2 weeks yet but his left shoulder is always up and head almost always tilted to left.
Helpful - 0
9432311 tn?1432825085
I echo Selma's words above when she says that you did the right thing in seeking surgery for your son to prevent further syrinx formation. His youth will indeed prove to be an advantage in his ability to heal. A physical therapist will probably demonstrate some effective exercises you can help with for your son's neck. I hope he is feeling better today.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum

  It is important for your DS to move his neck to prevent scar tissue and the muscles from getting tight....use heat for 15 mins b4 and make it a game and start with little movements at a time and build....then use heat again for 15 mins when done....

Know that many of us have surgery to prevent a syrinx to form, so doing so with several already formed...you can not continue to wonder...you did the right thing.....you have!

It seems many times the younger one is the better the recovery  can go....there is less chance for perm nerve  damage and they do tend to bounce back better then us older folks....

Be confident and comfortable with him moving his neck and he will be better with it too.....

Your Dr should have given you a list of to do's for post op....so if PT is on the list follow it...talk with the Dr to better understand how and when you can be more insistent with  with your little guy....some of it could be pain related and the rest could be he is reading into your fears and hesitation.....

If it is pain, then let the Dr know.....keep him on a schedule for pain meds and slowly step back off them.....once pain has started most pain meds do not help this is why keeping to a schedule is important.
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Avatar universal
Thank u so much. Its nice to know someone that doesn't even know us cares. This has been the hardest thing I have ever gone through. My heart also goes out to u and your son. I hope the best for u. I am in mn and I haven't been able to find anyone who has been in a similar situation.....all I want is someone to talk to that doesn't just feel bad for us
Helpful - 0
9432311 tn?1432825085
I read your post above and feel great compassion for you. Your little boy is indeed young and I can imagine how frightened you are when you think about his pain. My son has a neurological diagnosis (agenesis of the corpus callosum) that causes seizures and head pain. He is autistic, so I really don't know all that he is feeling.

Continue to consult with your doctor about your son's recovery. Different surgeons  have various thoughts on physical therapy. The only thing I know is that the best place for your little boy now is your protective and comforting arms. I hope he feels better.
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