Is there anyone out there that has had a toddler 0- 3 who has had decompression surgery and has had issues. My child cant vocalize what is going on and I know he is hurting but its a guessing game at this time of what is happening.
Sharon, I am so sorry your son is in pain. You must be so stressed out and upset, I feel for you. How did the CT go? Any new news? Dumb question, I know, but is he taking any pain medication? Does he respond well to a cold press to back of neck/head? What is his surgeon saying about his situation?
Jenn
Hi there, I know your agony. My son, Luca is now 4 but had decompression surgery when he was 16 months old and then a second decompression surgery 8 months later. Luca also had a syrinx with his Chiari. After the first decompression surgery he had a CSF leak and then got a meningitis infection which lead to a revision and a lumbar drain. The lumbar drain also got infected which lead to another lumbar drain. The meningitis infection was so bad it nearly killed him. We were in the hospital for like 2 months. The second decompression surgery was done 8 months later because the syrinx returned but in a different spot. He again got a CSF leak and meningitis. He developed hydrocephalus from the meningitis and his neurosurgeon suggested a VP shunt. I knew in my gut I didn't want the shunt for him but time was an issue and his pain and suffering and I got talked into it. The day after he got the shunt he vomited and never stopped for an entire year later when I finally convinced the neurosurgeon to take it out because he simply didn't need it anymore. He vomited sometimes 3x a day. It was awful. With all of that being said, he also couldn't vocalize to well what he was feeling. I looked for things like the headache look, he always wanted to lay down, he would say he wanted to go night night which meant he didn't feel well. I looked for fever, vomiting, the CSF filled bubble underneath the incision, the leak, he would say ouch for and point to his head or belly when I asked what hurt. He was on Tylenol, morphine and a muscle relaxer which helped a lot. I'm sorry your little one is in pain. If you need to talk, I'd be happy to. My email is ■■■■■■■■■■■■■■■■■■■■■■ or my cell is 321-■■■■■■■■.
Well we havent heard anything from CT scan yet .they also did blood work so maybe something will show up in that. Porter takes tylenol with codiene and that is all I have to give him Usually try and hild off till night time unless he is really irritable. Toni my son also had menigitis after his surgery. His patched didnt hold and when they removed his stiches he started leaking threw the holes. I was sent home and was told to watch him and if it got worse to go to ER. Woke up early the next morning and his bed wad drenched in spinal fluild. They did a dura seal on his skin and sent us home . Got home 2 hours later he was running high fever and we were admitted for 15 days of antibiotics and they opened him up and repaired his patch. My oldest saughter who is now 21 had decompression surgery at age 17 had some major issues but none like this. Hopefully will hear from them soon.
Is his NS staying in contact with you? It's so sad to think of your little boy being in pain and unable to vocalize what's wrong. I would keep pushing the doctor for answers. be the squeaky wheel so to speak! Keep us posted!
Gonna call after lunch today if I havent heard from them. All I can do is leave a message and pray they will call me back.
Sharon, yes keep calling and make sure you know if he absolutely no longer has CFS leaking- pockets of fluid or pseudomeningocele. Get ALL if his imaging reports (radiologists reports) and get his surgeons notes from pre surgery to post -op. If you continue to get no answers I would consider finding another NS for second opinion. I’m not suggesting there is anything wrong with what the current NS has done- but a new, fresh pair of eyes (Chiari expert only) may unveil new and helpful information.
Jenn
Sharon, wow they should have never sent your son home with any leakage! If his blood work comes back clean, I would ask for an MRI to be done ASAP. Maybe that will catch what is going on. A second opinion can never hurt, a chiari specialist only as Jenn suggested. My son bounced back pretty good, he never really complained of pain it was just more of getting back to normal. It took a long while to gain his strength and energy back. Also, I just kept going to the emergency room (which was 3 hours away for the hospital he had the surgery at) and they would admit him and run tests, MRI's and the sort.
Sharon Cochran said:
Well we havent heard anything from CT scan yet .they also did blood work so maybe something will show up in that. Porter takes tylenol with codiene and that is all I have to give him Usually try and hild off till night time unless he is really irritable. Toni my son also had menigitis after his surgery. His patched didnt hold and when they removed his stiches he started leaking threw the holes. I was sent home and was told to watch him and if it got worse to go to ER. Woke up early the next morning and his bed wad drenched in spinal fluild. They did a dura seal on his skin and sent us home . Got home 2 hours later he was running high fever and we were admitted for 15 days of antibiotics and they opened him up and repaired his patch. My oldest saughter who is now 21 had decompression surgery at age 17 had some major issues but none like this. Hopefully will hear from them soon.
Well the CT scan came back stable. Guessing that means no change since last ct scan. Blood work hadnt came back yet. We have a appt on the 18th to see NS. He had a good night last night Slept decently.
What did the CT Scan say for his ventricles? Are they two big as in possible hydrocephalus or two small as in draining to much or just right? We have had all three scenarios at different times. It could explain his pain and discomfort is all. Since your son had meningitis it could lead to hydrocephalus as it did with my son. Google meningitis infection after brain surgery, it can cause some pretty nasty stuff. Perhaps whatever material they are using for the patch is being rejected by yours body? I know my sons neurosurgeon said its harder when they are younger because they can develop more scar tissue and bony growth because they are still growing and usually a repeat surgery is needed.
All they told me over the phone was that it was stable. I will have to find that out. My son was diagnosed with mild hydrocephalus back when he . Was 6months old. At 9 months he had to have surgery to open his skull cause he was born with out soft spots . Had to wear a helmet for about 4 months and now is helmet free but he has a large soft spot from wear they had to make him one. But I guess I will find out more when we see NS.
Sharon I pray your little man gets relief soon.
Hugs, jenn