My Brain Journey

Brian Campbell
38 years old
30mm right side AN
Retrosigmoid Surgery in May 2008

Introduction

“With a tumor that large, something should be done quickly!” That’s when I first heard that I had a brain tumor. As fate would have it, I heard that from an assistant of the ENT’s office. Not exactly the way I wanted to find out, especially since I was driving in traffic at the time. I was numbed by her off-handed comment. I’m now 38 and there’s NO WAY *I* could have a brain tumor! There must be some mistake!

I was talking to her because my ENT called the day prior and told me “something was found on the MRI” and that “surgery will probably be required”. Since he “doesn’t do that kind of surgery,” he referred me to someone who does. I was to call his assistant to get the referral done.

Year Leading Up to Diagnosis

Looking back, in the year leading up to this moment I had no less than four sinus infections. I missed several days of work because of it. I just couldn’t shake the sinus infection. At one point, I got pretty noticeable hearing loss and a “ringing” in my ear. “Oh, great, another sinus infection,” I thought to myself. Oddly, other than the hearing loss and “ringing” I didn’t feel sick.

I waited for a few weeks to see if it would clear up on its own. I resorted to REALLY hot showers (running the hot water in my ear) and trying to clear out what obviously was obstructing my hearing. It didn’t help.

Then, I did start to feel sick again. I missed a day of work and went to visit the doctor. By then, I knew the drill. I told him my symptoms; he said “hmm” a lot. Then, I would leave with my antibiotic prescription, fill it, take it, and a few days later it would be gone again. At the end of that meeting, I mentioned to him that oh yeah, by the way, I have mild hearing loss and a constant “ringing” in my ear. Intrigued, he looked again in my ear. Then, he said that it was probably due to the sinus infection, but if after I took the meds and the sinus infection was gone, self-refer myself over to see one of their ENT’s (Ear, Nose, and Throat Specialists).

After some time, the infection was gone but the hearing loss and “ringing” remained. Great, I need to make an appointment to see an ENT. After a few weeks of typical male stalling, I finally did just that. The ENT looked in my ear, sent me for a hearing test in his office, and said “hmm” a lot but not much else. Finally, he ordered a whole host of blood tests to rule out some sort of infection and an MRI (both with and without contrast) to rule everything else out. One way or the other, he was going to get to the bottom of my symptoms.

His thoroughness and willingness to take extra steps to rule out everything meant very much to me. I’m very thankful that he took that route with me.

MRI

The day of the MRI was ordinary. It was warm, semi-cloudy. It was a typical spring day in Houston. The MRI itself was fairly uneventful. I put on their wonderful hospital-type gown, removed all jewelry, etc.. About 20 minutes after the MRI began, they pulled me out and explained they were going to inject me with some “contrast”. She gave her legalese speech about possible side effects, blah, blah, blah. In true male form, I only listened to about half of what she was saying.

The MRI resumed. Then, I felt VERY nauseous. I remembered that I was given a “panic” button. That for any reason I needed to stop the MRI, I was to push that button. At first, I felt I could soldier through the nauseous feeling. Then, it got worse. I gripped tighter on the “panic” button but at one point I felt like I was going to hurl in their multi-million dollar machine! Then, after a few minutes it subsided to a more manageable level.

I remember my right eye bothered me a bit, but other than that I felt fine. I asked the lady that worked there about it and was told simply that having an irritated eye during an MRI is common for those that have “ear issues”. I didn’t know what that meant truly until later.

Diagnosis

The day after the MRI, the ENT called and simply said that they had found something on the MRI. It would probably require surgery, but since he didn’t perform that kind of surgery he referred me to someone who did. He gave me his assistants name and number and instructed me to call her the next morning to get a referral done.

He called me on Thursday afternoon while I was driving home (in traffic). I was rushing home to watch my kids so that Jenni could go do something. I knew I couldn’t contain the fear from my voice, so I opted not to call her and tell her I was on the way. As luck would have it, she called me a few minutes later. No matter how hard I tried to tell her that everything was ok, she could tell in my voice that something was seriously wrong. I had to tell her then that something was found on the MRI, that I wasn’t sure what that meant, but that I was to call the assistant in the morning. I was scared. She knew it. She cancelled her outing that night and when I got home we went to our room and we cried. I wasn’t sure if I would live, or die, or become an invalid or whatever other nasty thing I could conjure up in my head. She never said it, but I’m sure she was scared of the same thing.

If you’ve gotten this far, then you’ve read already about my conversation with the assistant. Other than the one off-handed comment, she is a very nice, pleasant woman to deal with. From what the ENT told me, she was a master at getting referrals done quickly. I remember thinking during this time that if I ever wanted anyone on my side for a referral, it was her. She was amazing! I had an appointment for the following Tuesday with the other doctor.

I remember commenting several times to others that by medical standards, things were moving extremely quickly.

Doctor Visit and Decision

On that Tuesday, Jenni took off from work and went with me to see the specialist for the first time. It was then that it was confirmed that I indeed had some sort of “mass” in my brain. He explained that it was an acoustic neuroma. He said it was a benign tumor, but because of the size (30mm) it had to be removed surgically. Radiation was not an option because it was large and already putting some pressure on the brain stem. He didn’t want to risk that swelling after radiation might cause more problems than it solved.

I was very comfortable with the surgeon. He was very friendly and willing to answer any questions that I had. His intern (this is a teaching hospital after all) was very helpful and nice too.

He gave me an ANA pamphlet with information regarding Acoustic Neruomas, diagnosis, treatment options, and other information. That night, I visited the ANA Forum for the first time.

Information Gathering

I cannot say enough wonderful things about the ANA Forum! The people I’ve met through there have been nice, supportive and knowledgeable. They’ve been with me through good times and bad both after diagnosis, during surgery, and post surgery.

Jenni posted to the forum several times (after threats from me if she didn’t) during my 12-hour surgery. All of the way, the forum members were supportive of her (and me)! I remember a story about very early on Jenni reading posts from the members to me while I was in the hospital. While I don’t remember it first hand, I remember her telling the story. She was curious about all of the people wearing pirate socks in solidarity of my surgical event. When she asked about it, they simply pointed her to the “Good Morning” thread under “AN Community” section. They told her that if she read the first four pages of posts, she’d learn all she needed to know. She asked me about it, and she says that it just brought a big smile (albeit crooked, pirate smile) to my face.

Through the next few weeks, I spent countless hours on the forum asking questions, getting information, and getting reassurance. I put myself in overdrive mode on gathering information. I wanted to know all of the possible outcomes of surgery, about how long I could expect, what I could expect after surgery, what issues might arise, etc.. I wanted to know EVERYTHING about Acoustic Neuroma surgery as possible.

My doctor said they would use the translab approach. Then, with about a week to go, I saw on some paperwork that I was going to have a retrosigmoid surgery. That threw my little brain in overdrive. Here I had spent weeks gearing myself up for a translab surgery and all that entailed. I then found out that I would be having a retrosigmoid surgery instead. After emailing my doctor, he said that he and the neurosurgeon had consulted and felt that retrosigmoid gave them the best avenue to the tumor. I was skeptical, but reassured.

Surgery Day

My mother came into town. We got a couple of hotel rooms 10 minutes from the hospital where I was to have my surgery. We got them for the night before and the night of surgery. The thought being that it would put us closer for getting there the morning of and would provide a place for Jenni and my mother to go during / after surgery that was close by. We sent the kids to the other grandparents for a few days.

It was a fairly unassuming day. It was dark out when we left to go to the hospital. As always, Jenni let me drive. I remember not knowing if this would be the last time that I got to drive ever in my life. I wanted some measure of control over that.

When we got to the hospital, we parked and went inside. I was taken back to a “holding” area. I was brought a hospital gown and some socks to change into. Everything else was to be taken off. I was nervous, but confident about the surgery. It was the easy part for me. I just got to sleep through it all, while everyone who knew me had to just sit and wait and pray.

I was asked by everyone what my name was and what side the surgery was being done on. I was marked at least once with a marker on that side. I knew that it was meant as a precaution to be very sure they were operating on the right person and on the right side. I quickly didn’t care about the imposition of answering the same questions over and over.

A nurse came by after I was dressed and started an IV. I was hooked up to plain saline. Very soon after, I spoke to the intern and he went over all of the possible effects (even death) of surgery. I was to initial each one that I understood that I could have that “issue” as a result of the surgery. Soon after that, the anesthesiologist came by and asked me some questions, then said that she would give me something in my IV to relax me a little bit. Holy cow, did it relax me!

I’m told that very quickly after that, they came to get me and wheeled me into the operating room. Reportedly, they stopped outside of the waiting area where I would be wheeled one way and my family would wait in another. On the ceiling, there is some mistletoe permanently displayed. It was the signal for both patient and family that this is the place to kiss and part ways prior to surgery. I was so..relaxed.. I don’t recall the mistletoe at all! I found out weeks later when Jenni took me back up there to see it again. I don’t remember any of it. It comforted Jenni and my mother as best as possible, but I didn’t have a care in the world at that moment.

During Surgery

My surgery lasted about 12 hours. During that time, Jenni and my mother received several updates from the nurses. For them, it was painfully slow progress.

Jenni posted to the forum (as instructed) during my surgery and in return received encouraging words from the members. By all accounts, she gave a very good play by play of what surgery time is like for the family. As one put it, they had not seen an account as rich in content such as Jenni’s. Hopefully, others can get some use of her account so they will be somewhat prepared for the ordeal.

Immediately After Surgery

Immediately after surgery, I was put in a recovery room and then into ICU. I’m told that Jenni and my mother were allowed to see me for very short durations. Quite honestly, my surgery was on a Thursday morning and the first that I recall vividly (for any useful duration of time) was Saturday or Sunday. The days in between give me only passing memories of certain events.

I’m told that I stayed in ICU for the first night after surgery and that I threw up several times. I don’t recall ICU at all. Apparently, I was moved from ICU about 8pm on Friday directly to a private room. I vaguely remember being moved, but I only remember bits and pieces of the move. I remember getting to my room and my mother and a family friend were there. I found out later that Jenni had gone home to visit with the kids for a little while and later came back up after I was moved.

I remember at some point Saturday or so watching (sorta) a basketball game with Jenni on TV. I remember asking her several times what time it was. To me, time moved differently. To me, I asked the time several hours apart. In reality, I asked her the time within minutes of each other. I remember being frustrated that time seemed to be going so slow.

While in the hospital, I didn’t eat very much. I remember my mother (who’s a nurse by trade) trying to coax me into eating several times. I just wasn’t hungry. I remember it being a great thing when I finally had some crackers and gulped down 3 apple juices. Before leaving the hospital, my appetite was mostly back as I was ordering and eating regular meals by that time.

While there, I was told that I needed to get up and move around. I was told I had to go to the bathroom. I was told that I needed to walk in the halls. None of this sounded appealing to me. I just wanted to sleep. I slept a lot in those five days in the hospital. Jenni even posted several times asking the forum members about me sleeping a lot and my seeming disinterest in doing anything else but sleep. She asked the doctor about it too. Everyone reassured her that what I was doing was normal and things would be fine.

Reluctantly, I mustered the strength to go to the bathroom (even when nobody was in my room, but don’t tell Jenni that) and to walk the halls with the aid of Jenni or the nurse. Everything I did required what seemed like a great deal of strength. A mere walk to the bathroom was exhausting.

I was told that I have a little bit of facial weakness, but that it should get better with time. Little did I know that my entire tumor side of my face was completely immobile. I remember wondering if my face would ever be “normal” again. This picture was taken about a week after surgery.

I had very little movement of my face after surgery. As you can see, I wore a homemade bonnet for awhile. I developed some swelling around the incision that my doctor said was CSF built up but it was not leaking out my nose or anywhere else. To control the swelling, he had me fashion a homemade bonnet to put pressure on it so that hopefully it would go down. After some time doing this, he gave me Diamox (a diuretic) to try and make it go away.

After I got home, I noticed that I was weaker on my right than with on my left. Being a skilled typist who once typed over 100 WPM, that was a challenge for me and it was very disheartening. I resorted to typing 1-handed for a long time until I had gained enough strength on that side to type with two hands.

Overall, my balance seemed to be relatively okay. I didn’t have headaches. I only took my pain meds for a few days. Recovery for me had started out. I knew that I was in for a long haul. I was pretty slow moving around, I was pretty weak and generally just sore from my surgery.

After a week or so of being on Diamox to bring down the swelling, I began to feel weaker rather than stronger. Nothing really major, just didn’t feel myself (although, I had chalked it up to normal recovery stuff). I noticed that I was cold a lot even if Jenni claimed it was really warm.

After several days, I began getting headaches every now and then. I contacted the doctor and they recommended OTC drugs when they came on. After another few days, the headaches became more frequent. Then, one weekend Jenni took one of my kids out of town and I was watching the 3 year old for the weekend. I didn’t feel great, but I felt up for that challenge. At one point later in the weekend my father came to town from Pittsburgh. The day before he was to come over and visit me, I got a fever. So, I popped a Tylenol which seemed to bring it back down. All the while, I hid the fact that I was running a fever from Jenni because she was out of town for a funeral and the last thing I wanted to do was ruin that for her.

During this time, about 6 weeks or so after surgery, I had returned to work part time. I wasn’t at the top of my game, and Jenni drove me to and from work. I had been cleared to drive, however it was Father’s Day when I had finally driven. My surgery was on May 8, 2008.

When she returned, I had to admit that I had been running a fever for a couple of days. She convinced me that I needed to ask the doctor about it because I seemed to be getting worse instead of better. At the time, I didn’t notice the slow progression of symptoms from general achiness, to headaches, to fever. When I asked the nurse about it, she said that a spinal tap may be in order just to rule out meningitis.

Jenni took me in for my spinal tap. The next day, I was called by the nurse that something was “just a little off” on my spinal tap and they wanted to admit me. I spent a total of four more days in the hospital. I ended up watching July 4th fireworks from my hospital room. As it turned out, I had some sort of allergic reaction to the Diamox that I was on. After I was removed from that (the day I was admitted), I felt tons better within a day or two. After speaking to infectious disease doctor, we both concluded that it must be the diamox and they chose to release me before the weekend.

Ironically, after being discharged from the hospital, a few days later my swelling went away and hasn’t been back since. I was relieved that I didn’t have to wear my homemade bonnet anymore!

Recovery in General

The last 8 months of recovery were painfully slow at times. I spent most days either sleeping or watching TV. I had no interest in doing anything else. Occasionally, I would walk around the house, but by and large I didn’t do a whole lot. A week or so after surgery, I asked (to Jenni’s amazement and delight) to go to Church one Sunday morning. Outside of the hospital, it was the only time I agreed to a wheelchair. Jenni wheeled me in for church services and wheeled me back to the car.

The church that we attend was very helpful during my recovery. They have been supportive in many ways. For instance, someone from the church brought us a home-cooked meal every other day for a month. For me, it was less about the food and more about being able to meet people that I didn’t prior know. It warmed my heart to know that complete strangers would take the time out of their busy day and money out of their pocket to help us during this time. It was great for Jenni because she didn’t have to worry about yet another thing while trying to wrestle two kids (7 and 3), figure out dinner, deal with my needs, work, etc. Another example of how they helped is that someone from the church visited me during my second visit to the hospital, and a couple from the church came to visit me while I was at home during recovery.

The guy who visited me in the hospital is a very unassuming 6 foot 8 inch giant of a teddy bear. He was so nice. He and I are still cordial to this day. I still go up to him at church to say “Hi”. His visit meant very much to me and did wonders for my recovery.

The hardest time that I’ve had during recovery is having facial weakness. Upon coming home from the hospital, I had no movement of my face on the AN side. As hard as I tried, I couldn’t move it at all. I remember staring into the mirror and raising my eye brows. The non-AN side moved (as expected) and showed wrinkles in the forehead area. The AN side didn’t move and was completely wrinkle-free. As much as I faithfully did the facial exercises, progress was VERY slow. I remember getting super excited when I got some movement back. I finally understood part of the “pirate” theme that you’ll find on the forum website. My daughter even joked with me about being a pirate because of my smile. Progress on that front is very slow going. My doctor even told me that they wouldn’t consider any weakness/paralysis of the face possibly permanent for at least a year from surgery.

I like to tell people that with most injuries or sicknesses, they talk about recovering in terms of days or weeks, but with this recovery is talked about in terms of months. It’s frustratingly slow at times. If you and your family learn nothing else from this experience, you’ll learn patience.

Since Then

I’m currently about 8 months after surgery. Life has gotten back to it’s hectic self. I still have a little bit of facial weakness, but it’s getting better. With the exception of the scar from my surgery, you wouldn’t be able to tell that I had gone though such an ordeal. The facial weakness is the most frustratingly slow thing to get better. I’m now 8 months post-op and it’s still there getting better. Overall, my balance is fairly good. I have resumed camping with my daughter about once per month. Look at this picture that was taken in October (about 5 months post surgery).

I have even bowled once since surgery. While I could tell that my balance had definitely been affected, I was able to muddle through two games of bowling (and I did just as good as or better than those who hadn’t gone through what I did). Afterwards, I was very proud of myself with what I had accomplished.

Conclusion

I have learned many things about myself, acoustic neuromas, the forum, and life in general. The road to get where I am today was fraught with ups and downs. But, Jenni, members of the forum, some very close friends, and some complete strangers have been there for me. They’ve seen me up and jubilant at my successes, and they’ve seen me at my worst. Through it all, they’ve encouraged me, helped me, supported me, and generally were there for me with whatever was needed.

Jenni has been my rock through all of this. She’s been with me to every doctor’s visit both pre-surgery and post. She was there every day in the hospital (both times). She was even there during the time that she was convinced she would be with Forrest Gump forever. I love her dearly and am eternally grateful to her for taking care of me, taking care of our kids, and generally taking on the load for our family for many months while I recovered. She truly is my hero.

I highly recommend to anyone having treatment that you have someone there with you that is your advocate. Someone should be there that fights for you when you cannot fight for yourself. Someone should be there at doctor’s visits because oftentimes the information given is so numbingly painful and heart wrenching that it takes two of you to remember it all. Before every post-op visit with the doctor, she would ask me about what I wanted to say or know of the doctor. She would write them down and she’d cross them off as they were discussed with the doctor. If I ever missed any (which happened every time), she was very quick to lend me a hand in remembering other things to ask, or say to, the doctor.

I’ve also gained a whole lot during all of this. Not the least of which is a deeper love for Jenni. While I am your typical male who doesn’t really talk about his feelings much, I have grown to admire and respect Jenni more than words can describe. I’ve often thanked her for being there for me, for taking care of the kids during my recovery, and everything else she shouldered for our family while I fought my own demon. Typically Jenni, she would tell me, “Well, what else was I to do? The person that I love the most needed my help, and I’m not just going to shoo him away because it didn’t fit my plan.”

Jenni and I have always had a sort of psychic connection. We’ve always been able to finish each other’s sentences. We’ve always been pretty tight in that regard. But, over the last 8 months, I’ve grown to deeply admire, respect, and yes, love her more and in a deeper way because of this journey and everything that we’ve gone through together.

I’ve said it many times, but it’s true and bears repeating. She was, and is, my rock. I shudder to think of life without her steady hand beside me. What she did during this time was hard, thankless, and selfless. I will always remember and be thankful for what she has done during this recovery period. In short, I will always love her.