We are looking it alleviate our little guy’s spine pain in school. He can’t sit on a hard surface so he has a “squishy” seat cushion but he also seems to need a back support to keep the pain at bay. Does anyone have a particular brand and model they can recommend? Thanks!
Hi, thanks for writing back. By what’s wrong do you mean besides chiari? Lol it’s certainly a loaded question and the answer depends on if you ask the folks at the chiari institute (their answer: brain stem compression, stem being at right angle, basilar invagination, needs fusion surgery to fuse skull to spine and two psuedomeningoceles)and possible tethered cord and pre-syrinx. If you ask one neurologist and ns who did the surgery and another NYC ns there is no syrinx or tethered cord and definitely no further surgery warranted, It’s just the nature of chiari and managing whatever pain and symptoms crop up due to triggers to inflammation in his body. For him it’s definitely movement, car rides, running, etc. Another neurologist believes the celiac and vitamin deficiencies are largely to blame. We hope and pray that after two years post op, 2nd surgery, which our ns mentioned as a time frame for healing, he will have improved a lot more and continue to get better.
Before joining this group and meeting a mom in our neighborhood with a boy a few years older than our son, we thought surgery was a cure for the pain, now we realize that chronic pain is just a part of it and something he will always have to manage.
As for the cushion…His spine hurt for over four months until we got him a ball seat with a back to sit on and had an older student carry his back pack. In time (4 months) the pain subsided. If we sit him on the island in the kitchen he will eventually have to get off because its uncomfortable for his back. His pain was in check but we took him to the beach, in spite of his head hurting, being dizzy, and his belly hurting and eventually he got up and went digging in the sand. The next couple of days he didnt want to move his neck but that let up, but for six weeks after he had back pain, scapula really under the right shoulder, which, with time and rest eventually subsided. As of yesterday he had five pain free days, he calls them zero. No dizziness and no pain for five days straight. He’s had longer good spells but we are grateful for even one day. He ran around on the front lawn for about 10-15 minutes with our dog and his friend last night and had to stop because the top of his head and his knees hurt. Sill do but “I can handle it mama” we are just trying to make him as physically comfortable as possible. Thanks for asking, hope you’re ok!
Hugs t you too! We grapple all the time with whether or not he has other chiari related things going on or non chiari related things. Fo example he had Lyme that wasnt diagnosed on time, he had mono at the same time, he has celiac and we wonder about others like eds or fibromyalgia etc but who knows. I think we may just grab a pillow like he uses at home fro school haha hope the teacher doesn’t mind!
We have used this one in our house before and it works really great. My son likes it. He doesn't have Chiari but has muscle pain and weakness. If he needs it to be cushioned there are others on Amazon. I always benefit from reading the reviews.
http://www.amazon.com/Angel-Sales-PosturePro-Lumbar-Support/dp/B000AP0HY4/ref=pd_sim_hpc_6
The school has always been great about letting my son take breaks and letting him stretch on an excersize ball when needed for stiffness also.
Good luck with your precious son....they grow up so fast. Mine turned into teenagers and I'm still trying to figure out how.
Wendy