Endoscopic Third Ventriculostomy- My journey following brain surgery

      I sat down to write this blog lots of times, then deleted. As open as I am on social media, this is one thing I have kept off of it for some reason. But September is hydrocephalus awareness month, and today, September 29th, is the five year anniversary of my brain surgery.

      At the time I was desperately searching the internet for personal experiences from individuals who went through the same thing. I only found one….. One single blog post that I read probably 1000 times that provided me with some comfort and hope. I was so grateful to that person for sharing their experience and remember thinking at the time, I will share my story too. It may help ease someones mind. So that is my goal with this blog post. Someone out there is having to make the hard decision about having brain surgery. Maybe trying to decide whether they should try an ETV over a shunt. Maybe wondering about recovery after and life after. This is for them.

      I hope my story answers some questions and eases some concerns. If one person finds it helpful then it was worth my time. Some parts may be tmi but remember this is written for someone who may be about to experience this and needs that info 🙂

      5 YEARS AGO

      Five years ago my life was very different that it is today. For those that don’t know me, I have a PhD in Physiology and at the time I was doing a postdoctoral fellowship in, ironically, neuroscience at LSUHSC in New Orleans. The crazy thing is, while studying the brain, I did a similar surgery in rats probably 1000’s of times lol. With that job I was working long hours in a lab studying post-traumatic stress disorder, teaching at the medical school and traveling almost monthly presenting my research at scientific conferences.

      I was/am also a photographer. I know it’s cliche to say, but photography is my passion. It is always on my mind and brings me so much peace and happiness. I photograph newborns on weekends and outdoor sessions in the evenings so my weeks are always very full. I share with you my professions because it was at work I first noticed symptoms.

      SYMPTOMS

      I suppose I always head headaches but never associated it with anything serious. I first noticed something was wrong during my photo sessions. During sessions, I squat down low to get eye level with my tiny clients and during newborn sessions I’m usually on the floor bent over. I started getting the sharpest most intense pain in my head when I did this. Like a knife behind my eyes. It progressively got worse to the point where it felt like my head may explode. Just extreme pressure. I would stand up and close my eyes and hope my clients wouldn’t notice and knew I had to stop taking sessions because I didn’t want to put my tiny clients in danger.

      I started referring to these symptoms as “episodes”. They would come and they would go. But started coming more often and more intensely. Sometimes I would feel intense pressure all evening. Then one day I was at LSU in the lab and I felt that awful pressure and my ears felt clogged like I was underwater and I went to move and I couldn’t. I felt like I was made of lead. It was the craziest thing in the world trying to move your body and your body not responding. That scared me especially because I drive the causeway everyday. What if this happened while I was driving? I knew I needed to get checked out.

      I made an appointment with a general practitioner at St. Tammany hospital and she started with basic blood endocrine tests that revealed nothing. By my third appointment I told her it was progressively getting worse and she scheduled an MRI.

      MRI RESULTS

      I will never forget the day the results came. It was a Thursday. I was at LSU finishing an experiment and getting ready to attend our weekly seminar series. I missed the call so walked to the window to look out at the Super Dome to listen to the message. It was something along the lines of your ventricles are severely enlarged you need to get in contact with a neurosurgeon asap. Here is one we recommend……

      So with shaking hands I called my husband first, then dialed the number to the neurosurgeon to schedule an appointment. His receptionist said he was out of town for the next two weeks. Of course he was.

      I ran to the office of Dr. M. She is one of the most influential women in my life. She was my graduate mentor and chair of the department where I worked. Easily one of the smartest and accomplished individuals I know. I remember just shaking. Like what the heck is happening. She calmly made me some tea and called her husband, also a physician. After a few phone calls she arranged for me to see a neurosurgeon friend at West Jefferson Hospital to put my mind at ease. So off we went in the middle of the day to the the hospital. My husband met us there. They did another MRI and I got an appointment the next day with Dr. Culicchia, a very well respected neurosurgeon in my area. He gave me the diagnosis of hydrocephalus, which is the result of the build up of fluid within the cavities of the brain. You can see in the image below a normal brain on the left and enlarged ventricles of an individual with hydrocephalus on the right. So that explained why it felt like my head was going to explode.

      Endoscopic Third Ventriculostomy- My journey following brain surgery

      After that initial visit at St. Tammany, my husband Matt accompanied me to every appointment with my neurosurgeon. I remember the waiting room being unbelievable crowded and we sat in silence reading pamphlets about strokes.

      Dr. Cullichia wanted to do a special MRI that looked at cerebral spinal fluid (CSF) “flow” through my ventricles. The only place that had this special MRI machine was at Children’s Hospital in New Orleans. I remember walking down the halls with the colorful walls of the hospital thinking this could be worse. It could be one of my babies instead of me. How lucky we were to have two healthy girls.

      Dr. Culicchia didn’t see a tumor and was looking for a blockage. A reason for my enlarged ventricles. We never got an explanation or a reason for my hydrocephalus. I remember sitting with Matt at the followup. Dr. Culicchia said my options were an endoscopic third ventriculostomy (ETV) or a shunt. An ETV is a procedure that creates a small hole at the bottom of the brain so that CSF can drain and be absorbed into the space around the brain.

      endoscopic third ventriculostomy

      As a neuroscientist I had a million ridiculous (maybe not so ridiculous) questions, like what if you puncture the basilar artery? I also was not so excited about having my head shaved. He told me that was a valid concern and he would do his best to only shave a small area I was a nervous wreck. I told him ok I will think about it and maybe have the surgery over the summer. He said oh no, you are coming in next week.

      SURGERY DAY

      My memory around that event is scattered and the only reason I know that is the day was September 29th because of a facebook pop up yesterday that said I was treated to a massage by my husband. I remember going the day before. I figured I could use some pampering. Honestly, everything just happened so fast. I didn’t really have time to process everything. My youngest was just a baby at 14 months old. She was still breastfeeding at the time but I had to wean her for the surgery. I was told recovery time was 4-6 weeks.

      The morning of the surgery I remember my oldest daughter, Mattie, asked me to wake her up. A surgery is scary enough but the thought of someone drilling into your brain was terrifying. I remember it was the longest hug. The type where you think I hope I get to do this again.

      The ride across the lake was quiet. I remember telling Matt how scary this was and he held my hand. He is not a hand holder so that made me nervous in itself. Like what was going through his head. They took me back to get ready but let him come to my bedside as they rolled me back. I don’t think our eyes left each other until I couldn’t see him any more.

      I remember the nurse starting a conversation I was so excited to engage in. Later, I realized it was a trap to occupy my while a passed out from anesthesia. I remembered that later and thought man, I would have liked to have finished the conversation!

      A few hours later I woke up super groggy and remember the nurse telling me they were going to get Matt. So my post-surgery drugged self started frantically trying to comb my hair with my hands before he saw me and realized I had wires coming out of my head. I couldn’t keep my eyes open and was slurring and felt like a mess but but boy was it good to see his face. It was the most beautiful sight. And then Dr. M. popped in on her way to a conference to check on me. The next few days was a whirlwind of family coming in and out trying to keep my eyes open for visitors. The morphine drip was wonderful and kept me comfortable. There was a wire placed in my ventricles to measure pressure. It was quite uncomfortable and was giving me a headache so the doctor asked a fellow to remove it. I do remember Matt’s squeamish face when they did that lol. After this surgery one of the things you need to do to leave is get up and go to the bathroom. It is not as easy as it sounds and took me quite some time to do. And there was Matt, by my side through better or worse helping as best he could.

      One thing I will never forget is a nurse that came in and was so unbelievably wonderful. She helped my try to eat by myself, gave me a sponge bath and brought a mirror to show me that my bald spot was not too bad. Her kindness made all the difference in the world. It’s amazing how a good nurse can change a stressful experience into something not so bad.

      I don’t remember the ride home or the first few days. Lots of bits and pieces. I remember finally being able to get to take a shower again on a bench. Everything was baby steps. I slept a lot. I felt dizzy and just off. I’m assuming it was fluid draining. Recovery was not easy but not as bad as I thought it was going to be. After about two weeks I tried to drive again. Very slowly lol. I picked Mattie, my oldest, up from school. After about a month I went back to work.

      And if you are wondering, only a silver dollar sized portion of my head was shaved. I could part my hair over it or wear fancy headbands. Also, when they drill the hole, your skull isn’t put back. I don’t know why I thought it would be lol. But there is a nice little dime sized hole in my skull. It was very very tender at first. For like two years it felt like a hair was growing in it or something and it didn’t feel good. But now it’s fine and Harley likes to find it and stick her finger in it haha.

      POST-SURGERY

      My symptoms immediately went away. No more episodes. I do experience dizziness when I lie on my back. I assume it may be over drainage. After a month recovery, I started working out again. Nothing too strenuous but I lived an active lifestyle before and was excited to get back to it. When my symptoms were at their worst I had to stop. It interfered with every aspect of my life. After the surgery, I started running again. At first this made my husband really nervous. He said he didn’t want to find me on side of the rode lol. I started slow and proved I could and slowly got back up to where I was. I was so proud this day after this seven mile run. This was such a huge accomplishment for me.

      Recently I started having headaches that wouldn’t go away. Nothing like before where my head was going to explode but enough to cause enough concern to make an appointment with Dr. Culicchia. He ordered an MRI and to my relief my brain looked beautiful. My ventricles were back down to normal size. I’m going to attribute those headaches to stress lol. I do feel strange sometimes and mild pressure. But it comes and goes so I know my ETV is functioning properly. Dr. Culicchia did put me in touch with a neurologist to monitor my headaches. So far so good. I’ve been doing really well.

      We never did find out what was the cause of my hydrocephalus was. Dr. Culicchia said maybe it just slowly developed over time to the point that my body just couldn’t manage it. Who knows. The whole experience has definitely put things in perspective for me. I don’t take a single thing for granted now and made a big life change after my surgery. I left my career as a scientist and started teaching science at an all girls high school. This was a hard decision but I feel was best for me. This has allowed me less travel time and hours away and more time with my family. I got to experience having my oldest at school with me for the last four years and having my little one right next door. The extra time with them has been such a gift. This change has also allowed me more time for my photography which is my stress relief.

      FAMILY PHOTOS

      I can’t have a blog post without photos……I have always been the family historian long before I was a professional photographer. Both of my girls have detailed baby books and journals. I have documented everything with photos and every few years enjoy planning our family photos. I remember before my surgery thinking, gosh I wish I had updated photos of us just in case something happened. Everything was so rushed that I couldn’t do them but after I recovered I couldn’t wait.

      These photos were taken in January, three months after my surgery and are so precious to me.

      I hope this brings some light to hydrocephalus. It is a disease that can be controlled but not cured. When controlled properly you can live a normal life with few limitations. I am so happy and grateful for my incredibly talented doctor, my supported husband and family. However, I know many are not as lucky as I am and who continue to suffer daily with this disease. I was fortunate that the ETV was a successful option for me.

      September is hydrocephalus awareness month . You can learn all about the condition here and find a link to donate to very important research if you wish. As of now, there is no cure. The only solution is brain surgery. If you are suffering from hydrocephalus, there is an amazing facebook group that has been so wonderful to me. Nothing but love, support and questions answered. You can find the link to that here. I have made several new friends in the group and it has been such a valuable resource to me. If you are a hydro warrior, I’d love to hear your story in the comments! Also, if you have any questions feel free to comment below or message me privately at anniewhitakerphotography@gmail.com. I am happy to answer any questions or just be a friend to provide support <3

      hydrocephalus awareness

      Endoscopic Third Ventriculostomy- My journey following brain surgery

      Endoscopic Third Ventriculostomy- My journey following brain surgery

      Endoscopic Third Ventriculostomy- My journey following brain surgery

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      I love you my beautiful daughter. I didnt know all you went through. Im so thankful you are doing so well. You help so many people understand the journey, including me. I love you ❤