My eye surgeon at Massachusetts Eye & Ear Infirmary seriously deserves all the accolades in the world. I would not be sitting here typing this post or even living the life I am living now without his skill and expertise, but most importantly, his compassion and empathy for my situation and dedication to doing his absolute best to try and help restore my vision and get me back to a normal life.

If you’ve read enough of my medically related posts on my blog, then you know that I have nothing but the highest respect for my Neurosurgical and Neuro-Oncology medical team in Boston, MA at Massachusetts General Hospital, and the nurses and doctors in their E.D. and Neuro Lunder Units who have cared for me on numerous occasions. However, there is another specialist in my corner who deserves some serious applause for a number of reasons, and that’s my Neuro-Ophthalmologist at Massachusetts Eye & Ear in Boston, Dr. C. (full names not disclosed for their protection).

When I was diagnosed with my brain tumor and had met with my now neurosurgeon Dr. N, he had gone through all the possible side-effects and complications that I might face coming out of surgery, mainly because of the location of the tumor in my brain and what they were going to be disturbing. The tumor was located in the cerebellum which controls your vision, balance, and movement, so one of the biggest side effects I was likely to have was double vision that would eventually subside. At my post-operative appointment with my neurosurgeon, it had almost completely subsided minus a few issues that were occurring with up-close vision, like when I looked at my phone I had almost a halo effect around the words and images. He had recommended I work with my primary Optometrist and if they felt that this might be outside of their realm, he’d refer me to a Neuro-Ophthalmologist for further evaluation. We also had discussed letting my eyes slowly start to work together again since I was seeing progress and felt patching each eye, and alternating throughout the day, was holding me back from them eventually working together to see single. After that appointment, I went home and had started to slowly let my eyes work together at his discretion, and my then physical therapist’s discretion. I was encouraged to patch one eye if I was getting tired or fatigued and take a break to prevent any mental strain or eye strain. However, just a few days later I was having severe head pains when I moved, was super tired, and just felt like I was having what I thought was another bad bout of vertigo from my high school days, and was in bed for close to a week, not focused on my vision, but knew it was getting worse when I was awake and not sleeping. After realizing this wasn’t getting better as it had in the past, we were encouraged to come into Boston for imaging and I ended up with what we concluded was hydrocephalus and had emergency surgery to have the VP Shunt placed.

Coming out of that shunt surgery some of the double vision had changed, but it never really got better. The vision was double all the time, and the vision I was seeing now was like taking a picture and then placing another picture on top of it and tilting it. I had switched my physical therapists and we tried to work on some vision therapy exercises, hand-eye coordination, and depth perception exercises, on top of my regular physical therapy to rehab my mobility. In the long-run, my medical team and I decided I needed to be seen by a Neuro-Ophthalmologist. We called for an appointment in late February/Early March and got booked for early May, however, I got my consult moved up from the initial date in May to the end of March after deciding I just could not wait that long to take the next steps in resolving this vision issue that was really holding back quite a bit of my overall recovery progress. The vision was contributing to extra dizziness and balance issues. I was unable to drive a car, it made my job when I finally returned to work 10x harder, and I could barely walk around the store without getting nauseous and tired. So I was determined to get an answer and solution to the problem sooner rather than later to hopefully get myself back to a more normal way of life.

The Consultation

The initial consult and the appointment that followed that did not go how I had hoped. I was basically told surgery was likely going to be my only option, but would not be done until one year from onset of symptoms at the earliest to see if this “self-resolves”, as there have been cases where the situation resolves on its own over time. There were no other options to help relieve my symptoms other than continuing to wear a patch over one eye, as we had already tried prisms and they did not work. I had another appointment set for three months later. That appointment was met with the same information from the fellow neuro-ophthalmologist working with the consultative doctor, but with the suggestion to give this another year to try and resolve before even considering surgery since surgery is permanent. I requested a surgical consult regardless, as all signs clearly were pointing towards surgery at some point. If the surgeon’s determination was to wait as well based on his evaluations and his experience in surgical cases like mine, then I would accept that and wait it out, but if I had a chance to have surgery before the next 12-18 months were up, I was going to take it.

Walking out of that last appointment I was feeling pretty defeated. I was informed by the very kind and supportive office coordinator that the surgeon was booking consults out 6-7 months. This wasn’t shocking news to me for trying to see a specialist, and she offered to put me on the cancellation list. She also offered to look and see what else she had for openings sooner in the calendar and managed to find one appointment two months out, however, it was for 8:30 AM in the morning and knowing we come from three hours away and had advised that afternoons were easier for us, wasn’t sure we’d want it. But we booked it. I’ll get up at 3:00 AM to make it in time if it meant seeing the surgeon sooner and having an answer sooner. I appreciated her looking, and thanked her for her help as I stood at the desk a bawling mess. Totally distraught, I was thinking about how I could not believe this was the current state of my life. I thought that recovering from brain surgery was going to be the biggest hurdle I would have to overcome, and now I was suffering from so many complications and setbacks with that, and now the visual issues, it was kind of this feeling of “what else could possibly go wrong or happen next?” met with the attitude of “why is this happening to me?”. Having that earlier consult though was comforting and gave me a slight glimmer of hope for the future.

The two months leading up to that appointment sped by and I was extremely nervous about meeting with this surgeon. I did my research on him, combing through his biosketches on the hospital’s website, his educational background, clinical and research interests, and reading tons of reviews from other patients of his online. His specialty was Strabismus Surgery (a procedure to correct crossed eyes/wandering eye), but he also had a clinical interest in pseudotumor cerebri (another term for hydrocephalus), which obviously being something that I suffer from piqued my interest. His background was impressive, double board certified in Ophthalmology and Neurology and only one of a few in the world to have such certifications. My confidence was growing and I was starting to think that this might just be the person to help me, especially since my last two appointments really did not go well I wanted to know who I was meeting with next, and what information I was gathering seemed promising. Now, you might be reading this and thinking it was going to be some uplifting and emotionally wonderful post about my eye surgeon, and it is, this is where he comes into the picture. He literally CHANGED my life, he changed my outlook on my situation, he changed my attitude on my situation, he changed EVERYTHING. This appointment was a complete 180 from the last two, and all of the positive comments and reviews from previous patients were spot on.

The Long Awaited Surgical Consult

Again, my appointment was extremely early in the day so it was an early start for my mom and me being up around 3:00 AM to leave between 4:00 AM and 5:00 AM to beat rush hour and make it on time. It was also an overwhelming appointment from the minute I walked into the exam room. Last time, I worked with just the consultative doctor or the one fellow working with that doctor. However, today there were two Neuro-Ophthalmology residents working with Dr. C, plus a Neurology resident who was shadowing for the morning on some of the cases. The two Neuro-Opthalmology residents took turns doing their evaluations and measurements, asking questions and reviewing my background. Then Dr. C came in and introduced himself. There were a few things that I picked up on immediately; his demeanor - kind and welcoming, his attitude working with the residents - supportive and encouraging, instilling confidence in their work and educating them along the way, his attitude towards me - confidence when he talked about my history and condition but inclusive. I know more about what I’ve been through than they do, so he asked me clarifying questions and made sure I was included in the conversation when discussing my background with the residents, among many other commending qualities that you want in a specialist. He immediately knew about the tumor I had after reviewing my chart and explained why a case like mine would end up in his chair to the residents that were working with him. He did his measurements and reviewed them against what the residents were getting, and it appears they did a good job per the smiles and gestures from Dr. C commending their work. The measurements they take are quite interesting, they use a tool that has different prisms in it, they hold it up in front of your eyes and they shift the multiple prisms as you read letters aloud on a screen and watch your eyes work to read the letters. What they are looking for is to see how much your eyes have to jump to read the letter to determine how lined up they are, and the degree of prism used to minimize that work would determine the severity of my issue. If your eyes are aligned there should be minimal effort when each one is covered to read the same thing in front of you and the image should remain in the same position, thus your eyes shouldn’t have to jump to read the letter. The process is long, they take the measurements at all different angles, with your head turned to the right, to the left, head tilted up, then down, and straight ahead, slightly turned in either direction and so on. They also test your vision up close and check for torsion by putting these glasses on you with a red lense and white lense, then they shine a light and you have to turn the dials on the glasses until the two lines you see through the lenses are horizontal and on top of one another. One of the last parts of the exam required me to have my eyes dilated, which is not exactly the most fun (basically they apply these eye drops and your eyes dilate (grow into saucers) and then for about an hour or so you need to wear sunglasses outside or you’re literally blinded). After sitting out in the waiting room for 15-20 minutes to let the dilation take effect, we came back into the room and he wrapped up the exam with a review of my dilated eyes with this bright white light and spectacles that allow him to see the structure of my eye internally. After he completed the exam, he had me sit in the chair next to my mom versus the treatment chair to give me his diagnosis. When he was explaining to me my diagnosis and that it was a lot more complex than what we were originally told, I definitely started to tear up and then go into full-blown crying, which totally confused/concerned him, but he was completely understanding when I explained myself. The truth - this had been a long road and based on our discussion my situation was not necessarily going to be an “easy fix” like I was hoping for and not many of my cases walk through the door (shocker), and so the road just seemed to be lengthening in terms of “will I ever return to normal”. Unfortunately, nowadays, I also cry at just about anything. I used to do a great job at holding my emotions together and ever since surgery and the setbacks I just cannot keep it together as good as I used too and things hit me emotionally so much harder than before. Dr. C handled my mess of a self really well though, he gave me a great pep talk about how everyone has their path in life and it’s not always straight and sometimes there are twists and turns in our paths. However, he said he was going to do his best to try and help resolve my issues and restore my vision but guaranteed no promises that it would be perfect or that it would be a total success because of the complexity. I appreciated his realness and his honesty, but mostly his empathy for my situation versus brushing me off as a blubbering baby. My diagnosis ended up being a Bi-Lateral Cranial Nerve 4 Palsy with Excyclotorsion (so both eyes were affected and the muscles were paralyzed to some degree, and the excyclotorsion was the reason for the twisted/turned images, my muscles became so weak they were now twisted at a 27-degree angle). This palsy was likely caused by the increased pressure within my head (hydrocephalus). We set a surgical date (he was able to do this far in advance of that 12-month timeline I was continuously told) after the appointment concluded along with the next two evaluations. My mom and I had some things that got in the way of doing surgery in late September (his earliest opening) so we opted for late October, which also gave us more time and options to get the next two appointments in prior to surgery as well. My surgical date, October 25th, 2019.

Strabismus Surgery

The two appointments leading up to the October 25th surgical date were met with lots of measurements and talks about a surgical plan. It changed a couple of times based on the evaluation and if anything had changed with the measurements, and on my last evaluation two weeks prior to surgery, he gave me his final course of action based on what he was continuing to see. He was going to primarily operate on the left eye but wanted permission to operate on the right if needed. We would be using permanent sutures, (RAISE THE ROOF because my face had turned about 50 shades of red when he told me at the appointment prior he was considering adjustable sutures) and explained why he decided against adjustable sutures for his final surgical plan. The muscles he decided to operate on were lateral muscles (top and bottom muscles) and permanent sutures were the only option for detaching and reattaching them. Had he opted to operate on the other two eye muscles (the horizontal muscles/side muscles) he would have needed to use the adjustable sutures, which would have allowed him to basically go in and re-operate while I was in the recovery room if the alignment wasn’t perfect (an awake procedure). I already knew about adjustable sutures because my neuro-oncologist had told me about them during an appointment about two months earlier, and I read up on them as well, which explained my reaction a few weeks prior as soon as he mentioned it and we had a good laugh about it. I told him I was not going to be thrilled about using them (especially since I know I’d totally need to be adjusted since things tend to not go perfectly for me) but would let him do whatever was needed if it meant the best possible chance at clear vision. To say I was mortified about the potential of needing adjustable sutures is an understatement. So at this final appointment when we did the third set of measurements and he shared his decision to use permanent sutures over the adjustable sutures, I took a huge sigh of relief and we both knew it was going to give him and me the best surgical experience possible. I signed off on our agreement of the plan and would next see him on my surgery date.

The day of surgery I came prepared with what I might need, but also came with nerves, and lots of them, as I was the most nervous that I had ever been for a procedure. You might be thinking that I am crazy when I say this considering I’ve had major brain surgery, but I really wasn’t nervous about that. I knew that there might be side effects or complications but the chances were slim or rare, and I think that process happened so fast and I had guarded my emotions so strongly that I wasn’t really nervous about it at all until right before they sedated me, I had a little moment of fear, but then I was fine. However, I was actually freaking out about this surgery though and the number of unknowns coming out of this procedure. Dr. C kind of held the course of what the next few months, year, or years of my life would look like, in his hands. Would I live a normal life? Would I go back to driving a car? Would I return to the office at work? Would I ride a horse again? I had told him in my last appointment that I had two goals and they were to 1.) ride a horse and 2.) drive a car, and if he got me there I’d be happy and we made that our goal. I got called back into pre-operative prep and I had the sweetest nurse I could have had. She had read my chart prior to bringing me in and was pretty blown away with my history. She wanted all the details from me personally but had already considered me a warrior for what I had been through. During my entire surgical prep, we talked about my whole journey starting with the tumor and how we discovered it, the shunt surgery, the setbacks, to now with the need for this eye surgery. Every nurse or doctor that came into my room my nurse made it a point to tell them what I had been through, each of them intrigued to learn more, and she told each one of them that I was a warrior and they should all be impressed. She definitely was giving me some serious confidence boosts, along with the rest of them, as most were completely blown away that two brain surgeries later I was walking, talking, and standing, and my only complication currently left was hopefully about to be fixed. Despite all of this, the nerves were still there hiding underneath the little moments of confidence. The nerves were mainly because there was a chance this surgery wouldn’t work completely, right away, or at all, and that a second surgery may be necessary which was scary. It also meant not knowing a timeline for when I’d be back to normal, if at all. There were way more unknowns coming out of this surgery than with any of my other surgeries, and not being in control or even having a little glimpse at what things might be like when I wake up from surgery was anxiety inducing.

Once I was totally set-up and ready to go for surgery, my family was let in to see me. My anesthesiologist came in and met with me and asked how I was doing, and did her pre-surgery exam. I did tell her I was nervous and she told me she had something to take care of that and would be back shortly to administer it once I’d met with Dr. C. When Dr. C. finally arrived to check-in, he introduced himself to my aunt and step-dad and welcomed my mom back. He came to check on me while they chatted amongst themselves and asked how I was doing. I have never, EVER, told a doctor prior to surgery that I was nervous, but I did tell him, and he totally put my nerves at ease. Joking and saying, “don’t worry I’m nervous too”, which was followed by some laughs and his statement that humor is the best medicine (he’s not wrong there). The anesthesiologist came in and gave me the relaxation medication, which hits your bloodstream pretty quickly (15 seconds, no joke) and they refer to it as “giggle juice” since that’s the side effect most people have, and off I went, laughing the entire way to the operating room.

When I woke up from surgery I was in a good deal of pain, which was to be expected. But what I don’t remember, and was later informed about during my post-operative appointment, was that I woke up and just kept saying “my vision, my vision”. Not that there was anything wrong with it, but I do finally remember when someone asked about my vision, I was able to utter that I could see singularly. I remember Dr. C was there at that moment because when I uttered those words he jumped into action to start evaluating me and I could tell he was HIGHLY satisfied with the results of his operation and told me that I would be too as things settled and the swelling went down. He’d be back in a bit once I had some more time to wake up from anesthesia to talk to me some more about how the surgery went. For the first time in over a year, I was able to look dead ahead, and with both eyes see singularly. After an hour or so in recovery, I walked out of the post-op room with nothing but my regular eyeglasses and some sunglasses on and no tape over my lenses, it was an amazing feeling! A week later we were back for the post-operative visit and he was still very happy with the results he saw physically and the measurements he took. He advised on what I would likely experience as side effects from the surgery based on what he had to do to get me lined up to see single straight ahead. However, he also said it should get somewhat better over the next 3, 6, 9, and 12 months as well. So there was hope to have reduced double vision in my gazes and I could start resuming normal activities once I was comfortable. My eyes would remain bloodshot for a while but that would clear over time as the eyes heal. I was also severely bruised around my eyes and on my face. It honestly looked like I was in a “knock-out, drag-out” fight and lost, which he advised was not normal for many patients and he was as gentle as he could be during surgery. Once again, not shocked that I would be the one to have random and unexpected bruising that usually doesn’t happen after surgery, I clearly have this desire to always be the “special case”, but it would heal just like everything else with time. We set another appointment for 4-5 months out to get a second set of measurements post-operatively.

Recovery & Thankfulness

I am now 7 months out from the original surgery and was supposed to have had that 4-5 month post-op evaluation in March but due to COVID-19 we pushed that off and I’ll be going down in a couple of weeks. Despite the fact that I had two hydrocephalus relapses between the end of January and early February, with one of my symptoms being severe nystagmus and some slight double vision, and my biggest concern was repeat damage to my vision again from the pressure, I can say that all is well since we implanted the new shunt and got the swelling under control immediately and there are no new issues or negative changes to my vision that I can see. In fact, things have dramatically improved over the last 2-3 months. My downward gaze vision has gotten much better, my side gazes are getting better as well and I have started to wear contacts which makes a huge difference. I have been driving since mid-November and not only that, having the corrected vision has helped me to become more balanced again and improved some, but not all, of my dizziness issues. Slowly I am now starting to feel more like the old me again. I am excited to see what the measurements say at my next appointment and what Dr. C’s thoughts are on my progress since he last saw me.

Throughout this whole process, from the first appointment with Dr. C at Mass Eye & Ear to now, my experience has been world-class. I really appreciated his empathy for my situation and willingness to do whatever he could to try and help me get back to my normal life. He also didn’t put a timeline on it, he said he needed 3 measurements somewhat spaced out, but he knew that surgery was my only option considering all the other underlying issues that he picked up on, and that waiting for this to “self-resolve” just wasn’t going to happen. His demeanor towards me and my family was kind, understanding, empathetic, and he answered all of our questions and took his time with us during each appointment. He was completely open and honest with us about the situation as well, making sure we were fully aware of the outcome he was aiming for, but that there could be no guarantees with the complexity of my condition. He also had a good sense of humor during our appointments and before surgery, which just made him much more personable and relatable, and helped to put me at ease with the situation. His overall “bedside manner” as you would call it, was top-notch and you could tell that this was being passed down to the residents who worked with him. He’s phenomenal, and I would highly recommend him to anyone in need of his skill and expertise for a visual issue.

I really hope someone at Mass Eye & Ear sees this post, takes the time to read it, and knows exactly who I am talking about and makes sure that he gets the credit he deserves. He’s a kind person and a great doctor and the nursing staff that took take care of me was amazing, from pre-op to post-op, and they all had nothing but the highest regard for him and the kindest words, and let me know I was absolutely in the best of hands for my situation.

I also really want to thank Dr. C from the bottom of my heart for giving me my life back. There are so many things in this life that we take for granted, vision being one of those things, and it was something I never thought I would potentially not have. His skill and expertise has given me the ability to move forward with this blog, drive a car again, return to the office at work, continue chasing my career, but more importantly, he gave me my confidence back. For a long time, I was apprehensive to go out with my family or friends because I was embarrassed of the way I looked with the patch over my eye. I also didn’t like talking to people because I was so self-conscious with the patch over my eye knowing they were all staring at it, many asking questions, or making jokes or pirate comments, it made me feel as if that was the only thing they could see versus the talents that I was trying to bring to the table, be it in my job or in the philanthropic work I was doing. Being able to go back to seeing straight again and wearing my regular glasses without patching one of my lenses has been huge in giving me back my self-confidence. I am re-learning to look at people again when I talk to them and trust that they are seeing me and hearing me for everything that I am bringing to a meeting or presentation, and not just seeing a person in front of them with a patch on their eye. I’ve even gone back to wearing contacts which is an even bigger step for me and something that really reflects the older version of myself, as I rarely wore my glasses and mainly wore contacts. I hope he knows how much he changes people’s lives with his craft and how much he’s appreciated (at least by me anyway), and that he’s 100% given me my life back by being able to correct my vision.

If you or someone you know is suffering from some type of double vision issue and feel that you need to be seen by a specialist like Dr. C, please visit Massachusetts Eye and Ear’s website and their Neuro-Opthalmology page for more information and to schedule your appointment.