My Shunt Surgery – Revision

In June of 2018, I had my first brain surgery for the placement of a VP shunt. While I have no regrets having this surgery, I must unfortunately admit it was not the success I thought it would be. By July of 2021, a shunt malfunction was detected, and my first revision took place. This was my experience:

The First Three Years

It didn’t take long following my original shunt surgery for me to begin experiencing episodes of high pressure again. While it can take time for your pressure to regulate with a shunt, my neurologist and I felt an adjustment may be necessary.

For a programmable shunt like mine, you can picture that of a dial on an old rotary phone, with numbers ranging from 200 to 30 in increments of 10. The lower the number, the more fluid the shunt drains.

At placement, my shunt was set to 180. However, due to continued symptoms over the next few post-surgery months, my neuro team opened it up to drain more, dropping it to 170, then again to 140, and then finally to 100 where I remain to this day. These adjustments were all non-invasive, in-office procedures simply involving a magnetic device to the head.

However, despite these adjustments, I continued to experience debilitating episodes of high pressure. This left me little choice but to continue taking medication on top of having my shunt. My neurologist explained that unfortunately, shunts can be unsuccessful 50% of the time.

Now it was possible that my shunt was helping in some way, maybe by regulating minor fluctuations in pressure, but when there were drastic or prolonged spikes, my shunt could only do so much. Imagine a crowd of people trying to rush out of a small door.

I accepted that this was the best it could do and attempted to find relief through medications and natural remedies for the next three years. Though sometimes I did wonder if it ever really worked at all.

Regression

In May 2021, my symptoms started to become severe again, this time affecting my vision. In the medical world, that is never a good sign, so back to the doctor it was.

I ended up seeing a physician’s assistant on my neurosurgery team who felt these symptoms were unusual for having both a shunt and for being on medication. This physician decided to perform a “shunt tap” to see if my shunt was actually pulling off fluid like it should be.

I wish I had known something like this existed three years prior.

The shunt tap was unsuccessful at pulling fluid off, revealing that there was likely an issue with the shunt. This meant I would need to undergo a revision.

While a shunt adjustment is a non-invasive procedure, a shunt revision is actually surgery all over again.

Some reasons for a revision may be to check for issues within the shunt, such as a blockage in the catheter or to replace damaged parts.

In the case of a VP shunt, there are three parts that would need to be inspected: the ventricular catheter (entering the brain), the valve, and the peritoneal catheter (entering the abdomen).

While imaging may reveal the exact issues, such as a kink in the catheter or a detachment, it is often difficult to know the problem until the actual exploratory surgery takes place.

My shunt revision surgery was scheduled for July of 2021. Here are some of the things that were different from my original surgery followed by some of the things that were the same:

What was different?

Not much, honestly.

For my original surgery, I was in a pretty bad state of health to begin with. I had already been in the ER and admitted to the hospital the day prior, and I was not discharged until the day after my surgery. Whereas with my revision, it was surprisingly an outpatient procedure.

I don’t recall much of what was done to prep for my original surgery, but for my revision, I had to shower twice prior with antibacterial soap (night before and morning of).

For the revision, they did not have to go in through my abdomen like they did for the original placement. This was due to the fact that the problem was caused by a clogged catheter. Therefore, they did not need to replace any parts. This helped me avoid the awful cramping that came with my first surgery.

For my original surgery, I was prescribed an antibiotic to take for a couple days after. I remember specifically how massive this pill was. For the revision surgery, I’m assuming the antibiotics were administered intravenously at the time of the procedure.

For my first surgery, a small portion of my head was shaved, but I decided to shave my whole head afterwards to make recovery easier. For this surgery, I decided to prepare in advance by partially shaving my head. I went with a fun and edgy undercut/sidecut that would allow my incisions some space to heal yet still allow me to keep the hair I had spent three years trying to grow out. Both a full shave and a partial shave were so much fun and so liberating. Highly recommend!

In the days leading up to my revision surgery, I did have some imaging done (CTs, Xrays) as well as a Covid test. For my original surgery, I had already been in and out of the hospital having all kinds of tests done, so I’m not sure which tests were run specifically for my shunt. It is common though to have ICP monitoring done prior to see if a shunt would even be helpful.

What was the same?

Almost everything.

The aftercare and limitations were the same as I remember from before (10 lb weight limit, don’t get the incisions wet, walk a lot, etc). Since I had an 18 month old at the time, I had people stay with me for several weeks following my first surgery. For this second one, I had my parents stay with me and my now 4 year old for the first few days only. At this point, our entire family caught Covid Delta, so my husband was with me after that through our quarantine. (Yes, having Covid immediately after brain surgery was absolutely miserable. You can read about that experience here.)

(Sidenote: I was advised to continue my medication even after surgery. However, I refrained. Diamox tends to cause shortness of breath, and since I had developed Covid after surgery, I did not want to mistake Covid’s respiratory issues with Diamox’s side effects. I resumed my medication once I was in the clear after Covid.)

For either surgery, it is hard to say for sure when I felt back to my old self. I do know that the first week was more difficult, as I was still on painkillers and felt like the anesthesia was still in my system. That can be an uncomfortable feeling that you really can only wait out. I also experienced the “post-surgery blues” both times, which is fairly common and can happen for many reasons. Life gradually got back to “normal” over the next few weeks.

I know I was nauseous early on after my original surgery (specifically carsick coming home), but I actually ended up dry heaving once the day after my revision. (Note: Nausea and even vomiting can be expected after surgery, but anything severe or concerning should be reported to your healthcare team as it can also be a symptom of shunt malfunction.)

My incision was the exact same as before, and I can’t thank my neurosurgeon enough for his beautiful work. As mentioned above, they only had to go through my head incision, not my abdomen, but the site and cut were the same place, same size, and same shave.

In the End

I still believe my shunt had malfunctioned long before a problem was detected. It never really seemed to work well, but I had just believed that was as good as it would get. I really wish a shunt tap could have been performed in those early months following my original surgery, but you live and learn. Now I’m glad I know that option exists.

As for the revision’s success? I do believe it has made a difference in my symptoms. There are even times that I dip into low pressure, which makes me feel it is working. Nevertheless, my body in itself hasn’t changed with its aggressive fluctuations of pressure, so there are still times that my shunt has trouble keeping up. Overall though, I’m thankful we were able to find and repair the issue.

If you are anticipating a shunt revision surgery, I hope this post has helped you. If you are considering shunt surgery in general, please find more information in the following posts:

• All About VP Shunt Surgery
• My Shunt Surgery
• My Shunt Surgery – Recovery
• My Shunt Surgery – Healing
• More About Shunts – Revisions & Adjustments