Chiari Online Support Group

Fusion surgey


#1

My son is 16 years old and has had symptoms for the past 3 to 4 years. It started with headaches, I then noticed the sleep apnea. Then his speech began to become slurred and had difficulty swolling. About 6 moths ago while playing baseball ( which he has done since he was 5) he started having trouble tracking the ball we then noticed his eyes when looking to the sides would bounce uncontrollably. We took him to a neurosurgeon who informed us that his tonsils were 24mm descended, we decided to for him to have the decompression surgery which was done almost 2 weeks ago. Unfortunately we see some of his symptoms have got worse his speech, swolling and dizziness are worse then ever. Now the doctors suggest a fusion where they would use rods and screws to fuse the c3 to the skull. This procedure would have a recovery time of at least a month out of school and have to wear a collar for 2 to 3 months and the new incision would be at least 12 inches. I am completely heartbroken for my son, has anyone ever had this surgery or been recommended to have it, if so any advise you have would be greatly appreciated.


#2

Wow. So sorry to hear this. I hope as time goes on your son gets better. When my son had his surgery 4 years ago, he did not have instant relief from his symptoms. The total recovery process took quite awhile. It was about a year to see what he had to still contend with.
have you thought about giving it more time before doing another surgery?
My son now is at 23mm herniated & we are trying to medically manage… It’s very difficult. It’s a terrible condition for any child to deal with. My prayers & best wishes go out to you & your son. That surgery you’re talking about I have also read up on… It’s a big decision & I hope everything goes well if you go that route.
Hugs,
Brians mom


#3

Your son has a great mother. You both are in my thoughts and prayers today. Recovery is a slow process and each of us heals at our own pace. It sounds like you are on the right path by taking control and asking a lot of questions. Get as much information as you are able. Finding another medical opinion may also be of some benefit. Thanks for reaching out. Blessings

D


#4

your son is still healing.....it takes three weeks just for the incision site to heal and months and months for the nerves and muscles to heal again. My neck is totally fused from c1-c7 and I have had lots of surgeries. The swallowing should get better with time. Just be careful and try not to do too much and overdue things at first.....Make sure he doesnt lift anything for awhile. I babied myself with my second chiari surgery and did lots better healing :)

It just takes time to heal is the best advice. I would give it more time if I were you.

Karen


#5

Thank you Karen for your advise we are going to give him more time, the doctors have made it seem as though he needs to do the surgery soon due to his swallowing because at times it leads to him gagging and vomiting. But we have sat down as a family and have decided to get another opinion and give his body more time to heal and his body adjust. Was your fusion done with rods and screws, and what is your range of motion now?


#6



Drycare said:

Your son has a great mother. You both are in my thoughts and prayers today. Recovery is a slow process and each of us heals at our own pace. It sounds like you are on the right path by taking control and asking a lot of questions. Get as much information as you are able. Finding another medical opinion may also be of some benefit. Thanks for reaching out. Blessings

D

Thank you Drycare