Hi Everyone! I’ve been reading the forums for some time now, but have not posted. This may be a long post; I just wanted to share my experience.
A little background about me: I am a 28 year-old woman living in central Ohio. I was diagnosed with Chiari Malformation and Syringomyelia in October of 2017 and had decompression surgery on January 19th, 2018. I had been experiencing excruciating head pain for about a year, but chalked it up to sinus infections, stress, and my inability to sleep. When I went to my primary care doctor for my flu shot, I decided to bring up my constant headaches to see if she had any thoughts. She decided to order a brain MRI, and I started on this journey! After the initial diagnosis and meeting with a neurologist and a neurosurgeon, it was indicated that the syrinx in my spine was causing diminished function of my left side. I decided to have my surgery at the Cleveland Clinic, as it is closer to my family, where I was to recover.
For me, the best way to combat any anxiety is to be prepared, so I wanted to share my surgery and recovery experience, as it was my first time having major surgery and having an extended stay at the hospital. I hope it might help someone else who may be nervous trying to prepare for surgery.
I arrived at the surgery center at 5:30 a.m. as my surgery was scheduled for 7:30 a.m. with my dad and boyfriend. After getting checked in, I was called back to change into a gown, socks, and hair covering. The nurse practitioner did a urine test (common for young, child bearing women), and started my IV lines. The nurse ran through a series of questions, similar to what you might expect in your pre-op appointment. One part that stood out to me was when she asked to rate my anxiety level: Me: “four?” Her: “FOUR!? You know you’re having brain surgery? It’s okay to be higher than that!” While I was waiting, they did let my dad and my boyfriend come back to see me, which was good for me to not be waiting by myself. When it was time to go to the OR, they wheeled me over to meet with my surgery team. Each person introduced themselves and explained what their role in the surgery would be. Each team asked me over and over to explain what procedures I would be having: sub-occipital craniotomy, laminectomy of c1, cauterization of cerebral tonsils, and duraplasty. Everyone was very upbeat and relaxed, which put me at ease.
My surgery took about 5 hours, as the back of my skull was especially malformed (there was a crescent shaped bony part of my skull essentially embedded into my cerebellum). I was moved to the PACU for about 4 hours. My pain level was as expected (pretty bad!) but the WORST part of coming out of the surgery was that I was the most thirsty I have ever been. The combination of anesthesia, breathing tube, and other medications had given me the driest, most irritated mouth and throat, and I begged everyone for water (which I did not get until it was clear that I would not vomit). I also had a tough time finding what combination of pain medications would help me, as the lines of fentanyl, dilaudid, and morphine did absolutely nothing to help my pain (7 or 8 out of 10, which means for me, I can’t talk through the pain).
At about 5:30pm, I was finally moved to a bed in the Neuro ICU, where I was able to see my family for the first time. Be sure to warn them that you may be swollen from being face down and pumped full of fluid for five hours, mine were surprised at how puffy I was. I also didn’t want to eat anything as opening my mouth hurt the back of my head and my temples from where the surgery team had put my head into a vice to stabilize during surgery. The first night in the ICU was tough: it never gets quiet, I was in plenty of pain, and its difficult to relax when you have a thousand tubes attached to you. I think the longest I slept at any given time was about 40 minutes. I was moved to a semi-private room the next day, where I stayed the weekend for a total of 3 days. I asked to leave a day early because my pain was pretty much managed at that point, and I was having a terrible time sleeping at the hospital.
I’m lucky that I was able to go home to my family to recover for the first four weeks. My dad works from home, so he was able to be there for me at all times (which is helpful the first week or two when every task seems monumental). I also stayed in a mother-in-law suite, where everything I needed was on one floor. The day I tried stairs for the first time led me back to bed in incredible pain, so try to have everything close by, if possible. Overall, my recovery has been smooth, with a notable pain increase on week three due to coming off muscle relaxers. I am still working on regaining mobility in my neck, and am meeting with a physical therapist. As I approach week 5 post surgery, my biggest complaints are incision itchiness, some internal aching at the surgery spot, and some muscle spasms/stiffness in my neck. I am no longer having my excruciating chiari headaches, which is so amazing.
For those of you, who made it all the way to the end, or just scrolled (I can get long-winded!), here’s a bulleted list of some things I found helpful, and may help you prepare:
Pack less than you think you may need for the hospital. I overpacked for sure! Pack 2 pairs of PJ’s, your phone/tablet, deodorant, body wipes (I wasn’t able to shower in the hospital), a robe, slippers, lip balm, an eye mask if you’re a light sleeper like me, and of course, your own pillow!
I didn’t need a special pillow. Just find one you find really comfortable to use during your hospital stay and recovery.
While in the hospital, your nurses expect that you’re paying a lot more attention to the 3 minutes you spend with the doctors first thing in the morning than you actually are. Ask what medications you are scheduled for and ones that you have to request. For example, a doctor had a written order that I could take valium to help me sleep, but I had to ask for it. I didn’t know that, and of course, had a terrible night’s sleep.
I had an adjustable bed at home, which I initially thought was an extravagant purchase on my dad’s part, but helped greatly. Obviously, you aren’t required to spend thousands of dollars on a new bed, but sleeping at an incline helped with swelling and inflammation.
Stock up on foods that are easy to chew. Tip from me: squeezable baby food. I didn’t have much of an appetite for a few weeks after surgery, but had to eat at regular intervals because of the pain medication. The baby food packets are just enough food to get something in you, but not so much you make yourself sick.
I’m going to come out and say it, pooping is tough after surgery. It took me over a week to go and it was only after the fear of a doctor telling me they were going to recommend I go to the ER if nothing happened. They give you plenty of stool softeners in the hospital, but it wasn’t enough for me. Get some metamucil and magnesium citrate (it tastes like cleaning fluid, but it does its job). I will also take this space to plug the Squatty Potty–you do not want to strain with a fresh incision on the back of your head! Also, expect that you won’t be back to “normal” for some time. I am at week 5 and my digestive system is still a little “sleepy.”
Take it easy on yourself! I am lucky enough to have eight weeks on work, and I am grateful for the time to just relax and recover without having to deal with the stress of my daily life. I was in pain for so long prior to the surgery, in addition to the physical trauma of surgery, so it’s been nice to spend some quiet time trying to get better.
Thank you for reading. I hope this helps as some of you prepare for your surgeries. Best of luck!