Spinal Fusion #3

Let’s start off on a positive note! The shunt I had put into my brain to drain my spinal fluid has been phenomenal! We have adjusted the settings slightly, but we are at a good place now and I have been so happy with it! My headaches when laying down or bending over are virtually gone and it has been such a relief. I thankfully have not had any complications with my shunt at all, which has been a huge blessing!

I did end up having my fusion revision back on 4/30/18 (about four months ago). All things considered the surgery went really well. The plan was to replace the cervical screws on the left, which we knew from imaging were loose, and then extend the fusion down to C4. Previously the fusion was down to C2, but since we had failed twice at getting a stable fusion on the left we decided to go down further to try to anchor the fusion better. Our hope was that we could still leave all of the right side hardware in place since it was so stable and just add on to it in order to extend it.

When my wonderful neurosurgeon got into the operating room plans changed just a little bit. It turned out that the skulls in my skull on the left side were also very loose. The surgeon had to take those out and replace them in a new location on my skull (the third spot now). I also had a congenital fracture/deformity on my C3 vertebra. This is not a big deal in itself and did not cause any structural issues, but for a fusion you need to place hardware two level below the instability. For this reason, we ended up needing to extend my hardware down to C5 instead of C4 as we initially had planned. We were able to leave the right hardware intact and just extend it down further, which was what we had hoped for!

The surgeon was very happy with the surgery and we were hopeful that this would be the last fusion I would endure. Unfortunately, less than two months after this surgery (6/29) I was rear ended while on my way to a doctor’s appointment. It was an extremely minor accident. My car needed some cosmetic repairs, but was not too bad off. My service dog was scared, but physically absolutely fine. Any other healthy adult would have been just fine. Me? I spent the day in the emergency room. Although it was just a tiny tap and I had my cervical collar on we needed to make sure my neck was ok. Now the rods and screws we put in during the surgery are like a scaffolding. They are there so that bone can grow on top of them and the bone is what causes a solid fusion. Bone growth is a lengthy process that can take a year or more to be completed. So at not even two months out the bony is no more solid than Jell-O. It does not yet hold anything together. The concern was that the impact could have loosened one of the screws since the bone isn’t solidly holding my fusion together yet.

Well, they did an x-ray in the ER and it looked different from the x-ray we had done post-op. The next step was to do a CT scan. Unfortunately, the CT scan did show that the screw in the C5 vertebrae on my left had changed position. It wasn’t clear how much, but thankfully we were able to wait for my surgeon to get out of the OR with another patient so that he could view the scan. He felt comfortable with sending me home and just watching the screw’s position over time.

I had a follow up appointment with my surgeon the beginning of August. We did more x-rays on that date. The good news is that the screw did not change positions from the end of June to the beginning of August. This means that the screws positon in not progressively getting worse. The bad news is that we are not sure what this change in position means. Since the screw is at the bottom level and is used as an anchor it could cause the whole construct above it to become unstable over time. It could also be that it does not affect any of the other screws and is below the level of my instability so it doesn’t cause any issues. Time will tell on that.

I go back to the neurosurgeon the beginning of November and we will do more x-rays then to determine if there is any change. Right now we don’t really have a plan. My neurosurgeon is working with other surgeons to come up with a just in case plan b. Right now I am still in my cervical collar 24/7. I have been in it for an entire year next week (9/17) and will be in it for the foreseeable future.

Other than that my symptoms have been really good! I have had a great return of sensation to my right side, which is exactly what we were hoping for! I have been having a lot of pain from the hardware on the back of my skull. Anytime I lean my head against a head rest or a pillow I get a terrible headache on the back of my head. My surgeon is hopeful that this will go away with time, but right now it is quite bothersome.

There was another fairly major complication with my surgery, but I will save that for another post.

Please pray that we don’t need to do any more interventions and that my symptoms start decreasing.

Neurorsurgeries- Monitoring and Shunt

Hi everyone! The neurosurgery saga continues! This is a long update, so if you have any questions please let me know! 

If you all remember I was supposed to be in a cervical collar for six months in order for us to see if we could get my craniocervical fusion to stabilize since my screws from my fusion revision last February (2017) came loose again. I made it to 4.5 months and was feeling so rotten that I decided to call my surgeon and get in sooner. I saw him last month (2/6/18) and he ordered a number of imaging tests on my neck and spine. I had a couple of different x-rays done, a CT scan, a full spine MRI, and a bone density scan.

After we got all the results back we decided to move forward with a more extensive cervical fusion. The x-ray showed that everything looked the same as it did back when we imaged in September. We then did a flexion extension x-ray in which they took images of my chin tucked into chest and bent my head back as far as it would go. This shows differences in your neck with movement. The results of this x-ray showed that despite my loose screws my fusion was holding everything in place well enough that nothing is moving. Next, we did a full spine MRI. This shows the spinal cord and discs in your spinal column, which you cannot see on an x-ray or CT scan. This showed my tethered spinal cord release in my lower back was still ok and that my cord did not reattach itself to the spinal column (which there is always a chance it will). It also showed no pockets of fluid have developed in my spinal column (called syringomyelia), and that my Chiari 1 malformation (the back part of my brain (cerebellum) descending into my spinal column) still had plenty of room from past surgeries we have done to give my cerebellum more room. The one thing this MRI did show is that I have a pocket of cerebrospinal fluid (CSF) called a pseudo meningocele in the very back of my skull. I did not realize that I have actually had this for a while now. This pocket of fluid got slightly bigger since my last MRI a year ago, but it definitely changed shape. I will talk more about this pocket in a minute. Finally, we did a bone density scan to ensure that I did not have low bone density causing my fusions to fail. This test came back perfectly normal for my age and sex.

I had gotten a surgery date of April 6^th, but got a call at the beginning of this week that they had a cancellation and wanted to change my surgery date to Friday 3/9/18! I had to rush around to get everything scheduled that I needed to and was able to get into clinic this past Tuesday to discuss an exact surgical plan and sign consent forms. Once we started discussing the surgery my surgeon admitted that he was not 100% sure that this surgery was going to fix my symptoms. We always know there is a chance that surgery will not help, but he said he felt like he was missing something. He had talked with many other surgeons and other medical professionals and just felt like there was something else we weren’t looking at correctly. I love my surgeon and he highly values my opinion and knows that I am well educated on my condition and the nervous system. We discussed all of my imaging, past history, surgeries, and symptoms. The one thing that has always stuck out to me is that I have symptoms of having high pressure in my brain. I have headaches that get worse with laying down. I had a lumbar puncture done to check my pressure and it was considered borderline. The problem with lumbar punctures is that they only take a reading of the pressure in your brain and spinal column at one instant. It is like taking your blood pressure: you may have a good reading in the morning but have high blood pressure in the evening. The medication used to treat high intracranial pressure is a medication called Diamox. It essential pulls the extra fluid off your brain and spinal cord and drains it. I am on this medication but I can only be on a super low dose. This medication lowers the CO2 levels in my blood, so we cannot increase the dosage at all. The dose I am at is not high enough to control my symptoms or conclusively tell us if the symptoms I am having are from high intracranial pressures.

In order to conclusively determine whether or not I have high pressures in my brain we did something called invasive intracranial pressure monitoring. The specific type of monitoring we did is an external ventricular drain (EVD). During an EVD a small tube is place into a ventrical in your brain. The ventricles are where CSF flows through your brain. This tube is hooked up to a system that allowed them to monitor the pressures in my brain and also drain off extra fluid to see if decreasing the pressures in my brain provided me symptom relief. 

This surgery was actually done last Friday and we have been in the hospital since. I was in the neurological ICU until Monday. We monitored my pressures for those three days and determined that my pressures were normal. They went up when I laid down, but were still within the “normal” range. At this point the surgeon was not sure what he was going to do.  We decided to open my drain to see if lowering my pressures would help relieve my symptoms. My drain was opened on Monday and within an hour enough fluid was drained out of my brain to provide relief for the headache that I have gotten every single time I lay down for the past two years. After having the drain open for almost 48 hours my surgeon made the decision to go ahead and place a shunt later today. 

This is my CSF after one day of draining. As you can tell it has the color and consistency of water.

A shunt is a device that pull fluid from within my brain and drains it down a catheter into my abdominal cavity. It is implanted within my brain and there will be a valve that can be programmed in order to set the pressure that my surgeon wants in my brain. He is thinking to set it low because that is where my symptoms seem to be best resolved. He then will feed the catheter down through my neck, down my chest (around my port), and into my abdominal cavity. The fluid is then absorbed by my body. This type of shunt will allow my fluid to only drain when my pressures go high, which is important since my pressure is not high when I am sitting or standing. The surgery will be short (between 2-4) hours and recovery should not be too bad. The biggest risk from here on out is infection. I will finally get to go home from the hospital after 24 hours of antibiotics, which should mean I will be released Friday morning. This has been my longest hospital stay yet and I will have had two surgeries during this stay. Joseph and I are ready to get home! The other difficult part about this stay is that my service dog Reilly is not allowed to stay with me. He stayed with Joseph’s brother and family for a couple of days and then has been with my parents for the rest of the week. I have never been away from him for more than one night in the last 3+ years, so I am VERY ready to be reunited with him!!!

After I am healed from this shunt surgery my surgeon and I will go back in and have a fusion revision and extension done. I will make a subsequent post about that, but we are thinking that could be as soon as 6-8 weeks from now. Thank you all for your continued prayers and well wishes throughout this journey!