Hi all! I am not writing to you as I had hoped to about little Sammy's (our 6 year old) Chiari decompression. I had hoped he would see some improvement, even slowly, but hopefully consistently. Sammy did great with the surgery, and hardly complains about the incision pain.
Still, we are 6 days post op, and his Chiari symptoms have not seemed to change or lessen. Sammy's symptoms are dizziness, severe leg pain, arm pain, stomach/torso pain and headaches. His pains continued in the hospital and we tried to bring this up to the surgeon before we were discharged, and were then informed that he did not believe chiari causes leg pain and the other pains (he did not say this at all before he operated) and as much as told us that it was in Sammy's head... and that he could refer us to a neurologist for further examination.
So, I am writing as a desperate parent. We feel somewhat abandoned in Sammy's struggle, and can hardly believe we were treated that way. We still need to find a solution to Sammy's pain, so my questions are: How long after decompression did you (or your child) see SOME kind of relief? Do you (or your child) suffer from severe leg pain in association with your chiari? Do you (or your child) ever suffer from stomach/torso pain?
We do not know which way to turn to help him. Thank you in advance for taking the time to tell us about your experiences.
Thank you for that reply. I should also say that we feel confident decompression was the right move, because one of the cerebellar tonsils was strangled from blood supply, and his spinal fluid flow was almost completely blocked. We are just hoping that he will see some relief from his symptoms.
Like Becki, I can 't imagine watching my child go through this. I had excruciating hip pain before surgery that went away after surgery. 6 days post op is a blur to me because I was still resting most of the day and taking pain meds around the clock. I really can't pinpoint when hip pain actually went away. One day I just realized it wasn't there anymore. My eye sight and balance issues went away within 24 hours of surgery.
On the stomach pain, is he taking any different meds that may be hurting his stomach?
Praying he will get some relief soon. Hang in there.
My daughter had awful stomach pains after surgery due to constipation caused by the surgery and medications she was on. Zofran for nausea definitely constipated her and she was on Miralax and Colace for 6 weeks after surgery for relief. It is awful to see your child in pain so I completely understand what you’re going through! Hang on it will get better
My son is 14, for 3-4 years now he has had weird stomach aches. He says he feels a little nausea, but not enough to throw up and his stomach hurts all over. When his stomach flares up, which is about 5-6 times a year, it last about 2-3 days and he will not eat much during this time. We have been thru blood work, endoscope (sp) and several other tests which have found nothing wrong with his stomach. We just found out about his chiari in May. I do beleive this is the reason for his stomach aches.
As far as the leg pain, does he have a syrinx or a tethered cord possibly?
This is just my quasi-educated guess, but I would think you need to give it some time before you see improvement on the leg pains, etc.
I try to think that after surgery, our bodies are doing two things: recovering from surgery, and recovering from Chiari (with or without syrinx). Surgical recovery is stuff like managing incision care, making sure there is no CSF leak, dealing with muscle spasms and the resulting headaches, and this stuff can take weeks.
Chiari recovery must be different. If Chiari symptoms show up because our nerves are irritated by poor CSF flow, and if those nerves have been irritated for years, might the nerves also be somewhat damaged? It could take them a long time (months to years) to slowly begin to heal themselves.
This is just an idea. I haven't done any research, I don't have an MD. I just have a brain too big for my head and I want to use every bit of it!
