IIH chat: surgery and post-op experience
- Kierstin Andrews
- Jan 7
- 7 min read
Updated: Jan 10
On December 27th, 2024 I finally had neurosurgery to place a VP shunt and relieve the pressure built up in my skull and behind my eyes. Lucky for me, I live only 30 minutes away from one of the only four surgeons in the country that specializes in a procedure called "prepontine shunting". The issue with typical VP shunting is that is has a high failure rate due to the ventricles in the brain collapsing around the shunt. Prepontine shunting or "deep shunting" places the shunt deeper into the subarachnoid space located between part of the brainstem and the bony structure at the base of the skull. I was given the option to choose between the typical VP shunt or the deep shunt and in the end, I chose to go with the deep shunting in hopes for better outcomes and lesser chance for shunt failure in the future.
My surgeon made sure myself and my family were aware of any potential risks of infection as well as the .1% risk of fatality on the operating table. Of course the idea of me not even waking up from surgery scared myself and my family but after thinking on it for weeks, I decided that all surgeries must have their risks and I will more than likely be just fine in the end. As well, the surgeon said if he got in there and there was too much risk, he wouldn't even attempt the deep shunting. When the day came for surgery, I honestly thought that I would be more nervous than I was. I could tell my parents were nervous and my boyfriend left the pre-op room in tears so I know he was nervous. But i wasn't. Even on the hospital bed ride into the operating room, I was straight chilling. I never had surgery before so I didn't know what to expect but soon after I laid on the operating table, they placed a mask over my face and it was lights out.
When I first woke up, I remember hearing two things: "wow that was scary" and "she only lost about a teaspoon of blood". Then it was lights out again. I woke up again, this time in the PACU (post-anesthesia care unit). My doctor had told my family that when I woke up, I would likely be so out of it, due to the abrupt change in pressure, that I would almost "look through" them. This was not the case for me. I was alert, talking, even joking and laughing with the nurses. My PACU nurse was a sweet little lady with a Polish accent who kept me company for the next several hours as I waited for a room in the hospital. I asked her why I heard someone say "that was scary" when I woke up the first time but she said it must not have been someone in the PACU because I seemed to be doing just fine with no "scares".
When my family came to the PACU to see me after a couple of hours, they helped to fill in the blanks a bit more. My surgery that was scheduled for 4 hours ended up only taking about 2 hours and went wonderfully. My surgeon said that he was nervous when he opened me up due to excessive scar tissue but he was able to push the shunt through anyway and successfully complete the prepontine shunt procedure. He also mentioned to my family that I had woken right up directly after the procedure which is why I think I remember someone saying "wow that was scary". I don't know for sure if this is why I remember hearing someone say this when waking the first time for just a moment, but it makes the most sense to me. I mean if I just performed surgery and then someone woke right up after being lights out on anesthesia, I would be freaked out a little too. I knew I was stubborn but not stubborn enough to wake myself up from anesthesia. Just glad it wasn't during the middle of surgery!
The pain when I woke up honestly wasn't too bad, it was more uncomfortable than anything. For the first few hours I felt like I could feel the shunt inside of my skull. Like my body was detecting a foreign object. I could also feel the shunt moving and what I believed to be, draining the fluid like it was designed to. I basically have my own drainage system now. The flow of shunt can also be programmed manually with my surgeons special magnet which is helpful to avoid too little or too much flow and keep me at a normal CSF pressure.
I was only in the hospital for about 24 hours before my surgeon signed off saying that I was free to be discharged. My nurses were so helpful and kept me comfortable the entire time I was there. They all seemed pretty impressed with how quickly I was able to walk on my own and seemed to be recovering quickly considering just having brain surgery. They also were kind enough to let my daughter come up to the room and see me for a few minutes even though there were restrictions at the time for children under 18 years. I was blessed with an awesome team of nurses and doctors who made this process so much more calming and comforting for me.
One of the things that I was warned about that worried me was taking opioids for pain management during my recovery. Having a father and an uncle who have struggled with substance abuse, I am always extra weary of taking pain medications like opioids. I had been prescribed hydrocodone after having my daughter and the withdrawals from 1-2 weeks of taking it were so bad that I understood how people could get easily addicted. For this procedure, I was prescribed oxycodone to take home with me to manage my pain. Thankfully, oxy didn't even seem to have a desirable effect for me. I wasn't "loopy" or "euphoric" I was just exhausted and slept as much as a newborn baby for a week straight. I didn't think it had too much effect on me until I ran out 7 days later. Then I realized that the past week basically felt like a fever dream that I was finally waking up from. I'm grateful that stopping the oxycodone and switching to a rotation of Tylenol and ibuprofen was honestly fairly easy and the pain has been minimal since doing so. The risks of becoming addicted to pain medications is a prominent issue in US healthcare system. Everyone is different but being aware of risk factors such as family history, past or current substance abuse, untreated psychiatric disorder, etc. can help prevent developing substance abuse disorders.
The first night after being home from the hospital was the hardest and scariest, especially for my boyfriend, Dalton. I started feeling like I was going to get sick early in the morning and ended up throwing up a few times. This was frightening because my paperwork mentioned that if I threw up, I would need to seek medical help right away. Dalton, god bless him, started darting around the house not knowing what to do, while on the phone with my mom and the "on-call dr" operator. He called the number 3 times within that next hour and each operator declared that someone should give us a call "within the next 20 minutes". No one ever called and I ended up finally falling asleep. By 8:30am, we still hadn't gotten a call back so I decided to call myself one more time and "get mad at them" for never calling back. I hate confrontation but I let the operator know that it was unacceptable that no one ever called and that this was our fourth attempt to speak with a doctor. I was finally connected within the next 5 minutes where a doctor called and only spoke to me for a few more minutes before reassuring me that it was normal to get sick after surgery and I shouldn't be alarmed unless I'm excessively throwing up or have a fever. So my sweet angel baby boyfriend stayed up all night long worrying for nothing. All because some on call doctor most likely fell asleep on the job. All I can say is that I will be mentioning to my surgeon that someone needs fired or a stern talking to after that whole ordeal because that shit shouldn't have ever happened!
Looking forward, I'm heading into week 2 of recovery. I originally thought that it would only be a 4-week recovery but after surgery, I learned it could be up to 8 weeks. The first four weeks, I can't do any chores, bending, lifting, or literally anything other than walk. My surgeon calls it "movie star" treatment because "all a movie star does is walk down the red carpet". It's easier said than done, especially as I feel better each day. I have 2 incisions on my skull and 4 on my stomach that are healing beautifully. I now have a buzz cut because 3/4ths of my hair was shaved for surgery but I'm learning to love myself where I am at. Although this disease has taken away my quality of life for the past couple of years, I am happy to report that I am hopeful for a future that is directed towards remission and healing. I can already feel the relief of pressure and positive changes that this surgery has given me and I know it'll only get better from here. I'm thankful for the overwhelming support from friends and family during this time and my awesome surgery team from Goodman Campbell Brain and Spine!
For those interested, I will share the clinical study publication from my surgeon and his team as well as other helpful information I've found on Prepontine shunting below. This procedure is not relatively well-known yet and does have it's risks, but ongoing research has proven it's effectiveness over time.
Prepontine Shunting for Pseudotumor Cerebri in Previously Failed Shunt Patients: A 5-Year Analysis:
More information:
Comments