Chiari Decompression Surgery Recovery Caregiving

Good Morning, I can't speak to the Adult Decompression Surgery but I can speak to it in terms of a child. Our daughter had decompression surgery at Mayo, Rochester. I feel so blessed to have been at Mayo. The months of worry and tears were all replaced with joy. Our 11 year old daughter had surgery for her Chiari - her main symptom was actually sleep apnea - to the extreme - and headaches. Anyway, over a year later an all of that is remedy.

In terms of surgery - Dr. Ahn, at Mayo - performed it and also injected some pain medication at the surgical site. We thought she would be in ICU (her breathing might be an issue with the medications) for a night or 2 and then to a normal hospital room for 2-3 nights and then to a nearby apartment. That was best case scenario. However, no ICU, heavy narcotics only the first 24 hours, only 48 hours in the hospital, went to the mall 3 days after surgery. Pain was managed with Tylenol and Advil - we had the heavy stuff but it wasn't needed. She slept quite a bit and of course we managed her - and she did too- activity level. It was an amazing experience.

Happy to share anytime. Good Luck and sending you prayers!

Are you familiar with asap.org their are many people that can answers any questions u have it stands for America syringomyelia and chiari alliance project

First and foremost is surgery is NOT a cure. Surgery is done to STOP the progression. Currently there is no cure for Chiari Malformation.

I was diagnosed with Chiari Malformation and Syringomyelia as an adult in August 2015. Had decompression surgery three weeks later. I was in the hospital 5 days.

When surgery was discussed with the neurosurgeon he warned me that I would be in pain after surgery. I would be given meds, but they would not completely take care of all the pain. My mantra after that discussion was “no pain, no gain”. There will be light at the end of the tunnel so to speak. Fortunately I was the rare patient that had no pain. All I had was an airhead headache and nausea. This was due to the dura being open. Twenty four hours later I asked to stop taking the meds as I never had any pain from the actual incision and sutures. From then on all I took was Tylenol and Dramamine along with ice packs.

First day home I had to stay with family as I live alone. The next day I returned home. Laid low. Was able to shower w/o any help, but it took a lot out of me. For shampooing I reach out to my stylist and she took care of that. She had a much better set up to accommodate. Followed all the medical recommendations on my release papers. Did the head/neck exercises to that were given as well. Since I was not on any meds, I was allowed to drive once I could turn my head to safely drive. Needless to say I was driving 1 week after I returned home. I only did driving in my small town for a week or so. Longer distances came a little while later. Took daily walks as this was recommended by my medical team. A neighbor was my walking buddy.

Three months later my MRI confirmed that surgery was a success. Brain was returned to a relaxed position inside my skull and the larger syrinx inside my spine decreased in size.

Expect your husband to fatigue quickly. He needs to listen to his body and not push any further than what is recommended by his medical team! Following the recommendations given at his release need to be followed. Checking the incision daily is a must. Taking daily walks with another person also should be done. Reach out to the doctor with any questions or concerns after being release. Slow and steady in recovery. Remembering that it is not a race and listening to your body is important. And sometimes your gut feeling.

I kept a journal to track my activities and how I felt each day. It helped me to decide when to increase my activities or if I did too much. To this day I still journal my activities between my annual appts. Helps to determine what could be a problem or just me over doing it. I jot down questions when I think of them too.

Personally I returned to work full-time six weeks later. I had an office job so it was not physically demanding as say construction, factory etc jobs. But I still was tired by end of the work day. I am see my neurologist annually, along with an orthopedic hand specialist. I do have MRIs done every other year. My Chiari was large and this caused a large syrinx to form inside my spine. I was at the point of not if but when I would have lost all use of my extremities and confined to a wheelchair. There is some nerve damage in my hand due to not getting the correct diagnosis at first. So that is why I see an orthopedic hand specialist.

Wising your husband a successful surgery and smooth recovery. Feel free to reach out to me if I can be of any help.