hi! Jessica had her decompression surgery in Miami on Thursday… I believe she is recouping beautifully and quickly, thank God. She is having some odd sensations that maybe someone can explain…
She is having “cold indigestion/sensation in her chest and stomach.”
Lots of burping.
Extreme light headedness after BM.
Another question… Pre- op video fluoroscopy showed aspiration of both liquids and solids, but inconsistently… Post op she showed no aspiration of any textures except thin liquids which seems to have gotten worse… She’s consistently aspirating (choking or silently) on thin liquids… She’s on Nectar thickener now and the doctor wants another swallow study in a month to see if this has improved. Any one have experience with this?
Thank you all, so much!
I am sorry to hear the post op complication. I am new to CM, my 14 year old son is having his first meeting with the neurosurgeon this week. So I have nothing to share, except a gentle hug for you all.
Jareds mom
Shelley
I’ll pass the gentle hug to Jessica and I’ll take a bear hug! I’m glad you contacted me anyway so I can send you and Jared well wishes. Having it fresh in my mind I’ll let you know that I am grateful that God gave me the focus and calm and strength to research and choose a doctor with years and years of Chiari experience, who was up to date on the most recent research and treatments, and who sent us for additional testing prior to surgery to confirm/rule out other associated anomalies. Because I had educated myself, I asked good questions and he explained to me exactly what he was going to do. Additionally, I took Jessica for a session with a hypnotherapist prior, who gave her CDs we downloaded onto her iPod and played in the hospital. They worked MIRACULOUSLY with some painful situations… (In ADDITION TO morphine)
Jessica is doing beautifully. We learned of swallowing issues pre-op. Swallow issues were present and I don’t believe Jessica is having any complications that were unexpected or unusual for the recovery. Her stay was Thursday thru Tuesday and she came home with only Motrin for the pain which she has needed no more than 1x each day. Granted she is miserable but it’s more of the odd sensations and physical limitations (as well as the “I love being mommy’s little baby again”) that is difficult at this time.
May god bless you with clarity of mind, strength, and patience to make the best choices for your baby. You can have you’re melt down later! Xoxox. Natalie.