My 13 yo son will be having his 2nd decompression next week. We finally feel like we found the right neurosurgeon 
He looked at the MRI & said he could clearly see pressure on the spinal cord that is causing my sons symptoms & has an exact plan to correct this.
We are praying & have faith that after this Brian will be able to have a somewhat normal life.
Right now he spends his days pretty much laying on the couch due to a constant headache & now is unable to stand up very long because his legs turn bright red & he gets severe burning pain.
This is very stressful time for our family. If anyone has any positive outcomes after 2nd decompression, I would love to hear about it.
Thanks,
Maria
I can appreciate the stress that your family is under. I pray that Brian's surgery, his recovery goes smoothly, and you are able to tap into resources to help with symptoms that remain after surgery. That wonky Chiari brain does not always snap into place!
Prayers to you and your family.
Hi Maria,
I'm new to this forum and my heart goes out to you and your family. My son had his first surgery at 16; at 23 he is now scheduled for his second surgery as well. It is so hard to see them go through this...my son is expecting his first child and just lost his job because of the symptoms he was having. He also feels pretty crappy at times. I'm glad you've found a good neurosurgeon, we also feel very confident with this surgeon. The first one didn't seem too interested as symptoms returned so we had to search for a new one.
With my son, they see that the flow is restricted and believe it is due to scar tissue that may have developed but it can't be imaged, so it's exploratory to try to remove any scar tissue. His symptoms came and went starting about 6 or 8 months after his first surgery.
When did your son have his first surgery?
Like you, I would love to hear about successful second surgeries. I will keep you and your son in my thoughts and prayers.
Sherri
Hi Sherri,
My sons surgery was yesterday.
.He had his 1st surgery at age 8. Symptoms returned after a couple years & progessively downhill last year.
We were told that our son had extensive scar tissue… Almost like boulders blocking a river… He had an LP done right before the decompression. It showed almost zero pressure. This can be indicative of intracranial hypertension. The cerebellar tonsils were under extreme pressure & the NS wound up resecting the right & left tonsil as much as he could & then cauterized both. He also shaved down C2. This opened up pathway for CSF flow. We are hoping he doesn’t get another big buildup of scar tissue that create problems.
It’s gonna be a long road. It’s possible he might need a shunt in the future. Too early to tell. He has to heal & see which symptoms gone, which may remain . He will have more follow up this time with neurosurgeon & more MRIs. Last night was extremely difficult. Lots of head & neck pain & nausea.
Thankful surgery is done. Now the long road to recovery. Prayers to you & your son on a good outcome.
Maria
Maria, we all wish Brian a speedy recovery and a successful outcome from this surgery. JulesG
Maria, thanks for your response, especially just after surgery. I'm glad he came through it okay. That sounds like a LOT of scar tissue! I'm so sorry to hear how rough last night was...that first day or two can be difficult, especially with nausea. I had to argue with the first NS about meds to get it right. I'm hopeful our current NS will do much better with this. I'm sending prayers and healing energy for a speedy and successful recovery for your son.
I plan to look into holistic methods for my son's second surgery to see if there is anything that may be helpful in reducing the scar tissue afterwards. If you hear anything about reducing it in the future, I'd love to hear about it. Take care of yourself too and best wishes!
Sherri
Hi Maria,
I was thinking of you and your son today and wanted to stop by and see how he's doing. I'm hoping that he's feeling better and improving. When you have time, let us know :)
Sherri