Chiari Online Support Group

2 1/2 yr old grandson upcoming surgery

Hello,

I’m pretty new to this forum and new to Chiari. Our 2 1/2 yr old grandson, Mason is going to have the decompression surgery in the very near future. My daughter (his mom) and son-in-law (and Mason) met with his NS for the first time on Monday. They told us that Mason needs that surgery sooner than later. I don’t know all the details yet (my wife and I were out of town). Can anyone shed some light on what to expect for Mason during and after this surgery? What’s the process, what’s the ICU recovery time, how is recovery once at home, what should we watch out for and so on. I’ve been reading as much as I can on a daily basis, but the more I read, the more confused I get.

Also, can anyone recommend what we/they (Mason’s parents) can do to help Mason sleep better at night? The poor guy always wakes up at least two times a night. He used to wake up crying, but for the past month or so, he just wakes up and asks for his “shake” (protein milk in his bottle). The doctor advised to give him the shakes/protein if that’s what he asks for since he doesn’t eat as much as he probably should on a regular basis. He’ll eat fine one day, then the next day or two he won’t hardly eat any solid foods. Mason’s overall health is very good/normal. I don’t know the details of the MRI findings yet (I will know more this week).

Any help and/or guidance would be greatly appreciated. Thank you in advance and God bless.

Sammy

Anybody?

It is tough to have a little grandson going through Chiari and anticipating a surgery. You have very good questions that deserve to be answered.

However, they are best answered by the neurosurgeon and their staff. Lay people on this site are not overly qualified to answer specifics about someone else’s situation. When you ask questions that people do not feel equipped to address, they tend not to say anything. Not good, not bad, just what I tend to see.

Chiari surgery has different levels of surgical complexity and the resulting outcomes and possible complications. Reading on-line can cause more heart palpitations than necessary or give unrealistic expectations. With any big surgery, a doctor does not tend to give out all information at once as it is poorly retained. Perhaps a sit in on a visit or talking with the parents about your concerns would be more helpful in your grandson’s specific case. He is in his own unique situation with more or less additional factors that may affect his experience. I wish you godspeed in allaying your fears and increasing your knowledge base so you can help out your family as best as you can

Hello Gabby,

Thank you so much for that response. It makes perfect sense what you said. I’m new to this and i’m just reaching out in anyway i can. But you’re 100% correct. Thanks again and God bless…

So sad…keep us posted. I wish I had answers to your post. My prayers are with your grandson and family.

Thank you for your response. Well, Mason has his surgery set for this Friday morning. We have been praying for him and his speedy recovery. We know this is in Gods hands and have faith that Mason will be fine. Of course, we’re scared and nervous, but We know he will do fine and soon be running around keeping us on our toes as usual!

I’m not one to ask for much, but today i ask if you all can pray for Mason Samuel Allen. He means the world to all of us. Thank you in advance, and God bless all of us.

Sammy

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Definitely praying for your grandson, the medical team, and you and your family. May everything go well and you have the strength to endure anything

Hello everyone,

Sorry I haven’t updated anything yet. Well, Mason’s surgery was rescheduled for this past Monday morning. He had a second MRI before surgery to make sure there wasn’t anything else going on. His MRI looked really good, but there was a significant change from his first MRI taken a few weeks earlier. Mason then had his surgery. It took about three hours. Of course we were all a complete wreck waiting to hear how Mason was. Mom and Dad were called back to meet with the doctor (of course that scared the heck out of us all). Mom and Dad came back to us and told us that everything went really well. We all broke down in tears…tears of relief. Now it was time for his recovery to begin…our next nightmare I guess I’ll call it. It was extremely tough to see our Little Warrior in this state. The fist 24 hours were very tough for us all because Mason was on heavy medication. By the second day, Mason was alert and talking, crying and trying to understand what the heck was going on. Yesterday, Mason finally asked for his “shake” (protein drink in his bottle). He didn’t drink much at all, but he tried. Mason finally ate a tiny bit today (day three/Wednesday) and drank more of his shake. We were able to make him laugh out loud and giggle. He even gave me two “high fives!” He wanted me to sing to him (like I always do), so of course I did. Today he had an up and down day with his pain, which is normal according to the doctors and nurses. They removed his IV’s and began oral medication. That hasn’t gone as well as we were hoping for. He’s in a bit more pain until the new meds kick in. My wife and I came home for the night, while Mom and Dad stayed with him of course. Tomorrow is another day and I know Mason will continue to do better. I know Mason will do great and be back home soon. He just has to get through this rough patch first. All I can say is, there is power in prayer. So many people have been praying for our Mason and the doctors/nurses/medicine and anything else that has to do with Mason’s health. We will continue to pray for our Little Warrior and I know he will get through this and live a terrific life with his loved ones!

This is the most difficult time my life so far. I can’t even imagine what our daughter (Mason’s mom and dad) must be feeling. I can’t imagine what others like Mason have to deal with. I can only pray to God that Mason and all of you are blessed to get through this and are able to live a happy, healthy life. I pray for all of you and your families. Don’t ever give up! Find the strength you need to get through this. Find the “new normal” if you have to have surgery like this. I am so grateful that the doctors were able to find this at Mason’s early age.

God bless Mason and God bless all of you and your families.

Sammy

Hello everyone,

Well tonight Mason was able to go home! He is doing much better, but is still on meds and of course is still in some pain. Hopefully this will all settle down for him within the next few days. Mason’s doctor is amazing! Dr. Shafron out of Phoenix Children’s Hospital in Phoenix, Arizona. We can’t say enough for him. Also, Mason’s parents handled everything like champs! I’m very proud of them. As soon as Mason got home, he told his mom that he wanted to play! We know there are some challenges ahead, but with the grace of God, things will go great! Thank you all for your concern and support. God bless all of us!

It is wonderful that things are going so well for your grandson and his family. I pray that recovery continues nicely.

Thank you all. Mason is continuing to recovery. We actually have to tell him to settle down sometimes because he’s back to his normal self (playing and running around). He still have some pain, but he is doing exceptionally well. One question I do have; a couple days before his surgery, Mason began to stutter a little bit. Once surgery was completed and he began to speak to us in the hospital, he would talk clearly without any stuttering. But since he’s been home, he’s been stuttering again. He never stuttered before all of this. Is this normal? Will the stuttering stop? I know this is kind of petty considering everything else, but it does concern us a little bit. He goes back to his NS for a post-op checkup next week. Also, he still hardly eats anything. He sure tries to, but when he starts to eat solid food, he’ll chew it up, then eventually take it out of his mouth. We’re thinking that maybe his throat is sore for the surgery? He does eat, but not very much at all. So he’s still mainly drinking his protein shakes from his bottle. I’m sure we’ll have more answers once he sees his NS next week. We’re just keeping him as comfortable as possible and continue to pray that his recovery is extremely successful. Thanks again and God bless…

Hello everyone. I’m hoping to get some input on this concern because we are frustrated and have basically his a brick wall. Little Mason hasn’t be able to eat anything for the past few days. Every time he tries to eat a solid food, he’ll chew it then he’ll take it out of his mouth. He even tells us that his throat hurts. He also said that his ear hurts as he put his fingers in both ears. The ear thing only happened a few times that we’re aware of. He even stopped drinking anything for about a day or so. Also, when he was sleeping at night, he sounded very congested or like something was wrong with his lungs…kinda like he sounded right after surgery when they had to “suction” his lungs a couple times. My daughter (his mother) called his doctor and he said that this should go away. That was a few days ago. Well, this continued for another day or so. My daughter called again and this time they said that they wanted to see him. Once with his NS, they ordered another MRI. This was completed. So, my daughter waited to hear from the doctor (still at the hospital) and then a nurse came out and told them that they could leave and the doctor would call them. Nobody every checked Mason’s ears, lungs or throat! Lisa (Mason’s mom) asked the nurse about this. The nurse told her again that the doctor would call them. Well, of course Mason still had the same issue all evening, so Lisa called the doctor again. All they told her was that the MRI looked “as it should” (whatever that means). Lisa asked about Mason’s throat and so on, but was not given any answers. So here we are today and Mason still can not eat…he’s tried, but he can not eat. He finally did drink his protein shake from his bottle today, but could not eat any solids. Lisa is still waiting for a return call and it’s been several hours today since she left another message. She will cal again and again to try and get some answers.

Is this normal for this to happen after the decompression surgery? I could understand a couple days or so, but it’s been 11 days! If it is normal, shouldn’t the NS have told them that? Does he simply have a cold, virus? Oh yeah, the NS did tell Lisa that Mason’s inability to eat shouldn’t be related to the surgery/Chiari! If it’s not related, shouldn’t he or another doctor (Ear, Nose and Throat doctor) examine Mason before he left the hospital? Of course we are extremely frightened of the “unknown” and if this is all “normal” or not, and if Mason will become weak if he can’t eat. We are so frustrated, scared, upset and angry! Can someone please shed some light for us? Mason’s activity seems to be pretty good. He still plays, horses around like a little boy. Mason does not have any high temperatures either. We actually purchased one of those “forehead” thermometers for him. His temp had been 99 for a day or so, but pretty normal other than that.

Thank you in advance. Please help us help Mason…

Sammy