The Acoustic Neuroma Surgery & Recovery

Hi there, My name is Dan and I created this blog for people out there searching for information on the process of Acoustic Neuroma Brain Tumor Surgery and Recovery. I hope this helps to ease some concerns or fear for people who need to go through this too.

People sometimes ask me, “How did you not know you had a brain tumor?”

Well, let me start at the beginning. In about 2004, I was wakeboarding behind a boat and I fell pretty hard and hit my head. My friend, Mike, told me that I needed to stop because my pupils were uneven in size. I was sure I had a concussion so I got out, but I didn't go to the doctor. That night I remember waking up sometime around 3am and I smelled what I thought was toast. I thought it was strange because there was no cause for it. I just went back to sleep thinking, what in the heck just happened? Was it caused from hitting my head? Then the balance problems started not too long after that. I was dizzy and my eyes were jittery. I got braces on my teeth so I started getting headaches too. So I figured, the dizzy, falling over sometimes, fatigue, strange feelings I was having was from the wakeboarding fall and that the headaches were from the braces. It was frustrating and I would mention it to the doctor, but he didn't know what was wrong and he didn't run any tests. At this time I really didn't give much concern. After all, I was a young successful new building contractor and I performed physically demanding tasks all day long, and at this point I had been doing this type of work for approximately 15 years.

Well a few years later my symptoms continued to worsen and it was making my life miserable. I started getting tremors and the dizziness began getting worse and I never felt good anymore. I was finally fed up so I told my doctor and he said it could be a number of things, but no tests were run.

I needed a contact lens refill so I went and saw the eye doctor. I asked about Lasik eye correction and she said my eyes had a weird twitch and that I should go see a neurologist to make sure everything was okay before I thought about Lasik, so I did. The neurologist checked me out and said he thought I may have Multiple Sclerosis so he did an MRI and we waited about a week or so for the results. Boy was I surprised at the results. They informed me that I had an Acoustic Neuroma Brain Tumor.

That same week, (7/4/2008) my wife, mother-in-law and I were in to see the neurosurgeon, Dr. Nutik, to see what could be done. What he told us was shocking. Apparently tumors range in size from Small, Med, Large and X-Large. My tumor was X-Large at 44mm wide. I couldn't believe the picture on the screen of my brain with this huge tumor inside of it nearly severing my brain stem from my spine. Doctor Nutik said it was pressing on my brain stem and cutting off the flow of spinal fluid that goes into my brain. This is why I hadn't been feeling well. This was the largest tumor he had seen in someone who is alive and still walking and functioning as well as I was, and he wanted to take it out right away. My wife, Jessica told me that I had began not too look well and I can tell you I certainly did not feel well anymore. Doctor Nutik told us the worse case scenario's, including death, so we would be prepared. After surgery I could have hearing loss, facial paralysis, loss of my sense of taste, weakness on my right side and various other details that had to do with the nerves in that area of my brain where the tumor would need to be cut out from around. To be honest, I just wanted to feel better and if this surgery was standing between sickness and wellness, I I was ready to do this. I was sick of feeling sick.

The week or so in between diagnosis and the surgery was very emotional for Jessica and I. A lot of tears, a lot of what-ifs, a last dinner, we even celebrated Jessica's August birthday in case I didn't make it out of the surgery. We were prepared for the worst. This kind of ordeal really opens your eyes to what's important.

So 7-11-08, a week and a half after I was diagnosed, I was in at 6am at the Redwood City, Ca. Kaiser to have a craniotomy performed by Doctor Stephen Nutik, who I like to call "Magic Hands". Our families and friends came to support us, also two of our pastors from our church came to pray with us that morning and stayed most of the day to help Jessica get through it. We truly believe that Prayer is Powerful and man did everyone pray. After all the registration and preparation, I finally got wheeled into the operating room at about 9am and they took about an hour setting me up for surgery so it actually started about 10am.

The Acoustic Neuroma Tumor Removal surgery took about 10 hours to complete while everyone waited in the waiting room getting updates from the surgery nurse every few hours. Doctor Nutik had told us before surgery that out of 600 patients he had performed this surgery on, two had died in the first 200 surgeries and that the odds of me dying in surgery were very low. Notice he said, "in surgery", are very low. More on this part later. Still scary of course for us.

After surgery Dr. Nutik came out and talked to everyone and told them that the surgery went very well, but I may be paralyzed on the right side and have weakness on the left because he had to pull the tumor away from my brain stem and he wasn't 100% sure that he did that without harming nerves, so everyone was worried.

When I came out of surgery I didn't sense that time had passed, especially 10 hours. I actually thought something went wrong and they woke me to reschedule the surgery. I remember waking to see my wife Jessica, her best friend Jaime, looking at me in post op. After the briefing from my surgeon Jessica was a bit apprehensive about asking to see me in the post op area. Because Dr. Nutik, while briefing my family after the 10 hour surgery, mentioned he thought I would most likely be paralyzed on the right side of my body and would have weakness on my left side. Also, the post operation area is where the Dr's and nurses are watching to see me come out of anesthesia. It's not really a visiting place. It was Jaime who insisted that they go to see me. And boy I was sure glad to see them! I asked what time it was, it was 8:30 at night, I couldn't believe it. I remember I was VERY hot and the nurse told me it was because of the pain medication I was on and my throat hurt because of the tubes that were in there during surgery. Jessica also told me that my stomach was spasming, the nurse said this was my muscles waking up from the anesthesia. I also had very high blood pressure, about 197/110, after surgery and that was a big concern so they kept giving me medications for that. Also, I was moving my arms and legs without issue so needless to say my wife was relieved because I was NOT paralyzed!! Jessica was relieved to say the least that I was using the very side that Dr. Nutik said I would possibly be paralyzed on by using my right hand to remove the oxygen mask and say, "I'm hot"!
Jessica thought the worst was over, but it was yet to come.

We didn't realize that the hardest part was not the surgery it was the recovery.

That night after surgery was scary for Jessica and our families. While I was unaware, the nurses were telling them that because of where the tumor was that my brain could swell over the next couple of days and cause it to pinch off my brain stem, which would kill me. Also I had eaten some ice to try and cool off while I was in post-op after surgery, but I had aspirated, which means some of the fluid from the ice went into my lungs. I got a very high fever the first night from it and could have gotten pneumonia. Needless to say there were a lot of tears, but I didn't see any because my family didn't want to scare me by crying in front of me. My wife said she thought on the first night that she would wake up the next day as a widow. As my family was leaving to go back to the hotel Jessica asked my post operation nurse as she was leaving for the night, "how do you think he's going to do?" The nurse looked at her and stated coldly, "he's probably not going to make it through the night." She said this as she got on the elevator and the doors closed leaving Jessica feeling in shock. She had given the night nurse her cell phone number and tried to sleep in the hotel while waiting for the nightmare call that thankfully never came, I made it through the night.

The nurses gave me strong pain medications and steroids to try and keep the swelling down even though I was being given the steroid, those first couple of days my head swelled up beyond what I thought the human head could do. Even though they had taken the tumor out of the right side my family said that both sides of my head were HUGE. During these five days in ICU while my head was swelling Jessica stopped taking photos because she said I just looked too bad. It looked impossible for a humans head to get this large by swelling up. Jessica and my family tried to keep the tears in the waiting room and not let me see them, but I could see it in their eyes that they were scared. I thought it was odd that my brother had walked in to visit me and turned around and walked right back out. Later, I found that my brother just didn't want to scare me by crying in front of me. I could sense something was wrong even through Jessica's smile. I remember telling her that I was scared to death, but she said not to be scared, that I would be okay. It made me feel a little better. I couldn't get out of bed yet because my legs were weak so I hadn't seen a mirror and had no idea I looked like the Sloth from the movie "The Goonies". My ears were being pushed out and forward and my head was shaped like a football but more the size of a basketball. The nurse set up her little desk and chair right outside my door for five days to keep an eye on me. They took such good care of me. I could not sleep all five days in ICU because the pain was so intense. One thing did that help immensely was ice! Those poor nurses, all three of them, were so gracious to me and made sure all ice packs packed around my head, under my arms and on my body, were cold and full.

I remember just being HOT all the time and not being able to cool off because of the medications. They gave me many ice packs to keep me cool. Ice packed around my head and under each armpit. On my body. It helped a little, but I was still burning up. I sometimes kept one on my bandaged incision too and I had my bed with my head angled at 30 degrees to try and keep the swelling down. Man my head hurt so bad all the time. Out of ten it was probably a 8-9 continuously, but eventually the meds started making it feel better.

The first few days I couldn't eat and I was HUNGRY!! I had paralysis on the right side of my throat and face including my eye, which I could not close. The staff was afraid that since I cannot feel the food on the right side of my throat that I would choke or aspirate again and get pneumonia. I had a therapy nurse come in to check my facial paralysis to see if she could give me a special diet that maybe I could eat. So she taught me to turn my head to the right and swallow so it would use the muscles on the left side of my throat to compensate for what the right couldn't do. I started to do that and they put me on a soft food diet. This method seemed to work OK. The food was actually pretty good too.

About day 4 I finally got to get out of bed and I used a cane to walk around and take a bath, that felt so good. It was tough to walk and I was sore from being wrapped up so tight during surgery and groggy from all the medication they were giving me.

The facial paralysis was not as bad as we had anticipated. I had to wear an eye bubble at night because I couldn't close my right eye all the way and they had to put eye drops, gel and lubricant in the eye all the time because they didn't want it to dry out.

I brought my PSP and IPod, but had no interest in any of it while I was there.

The doctor would come in and check up on me every day and let me know what was going on. About day 5, I got the bandage off and I had 32 stitches that looked like a baseball behind my right ear, but it looked good. Dr. Stephen "Magic Hands" Nutik did an awesome job sewing it up.

I finally got wheeled to the recovery area that people go to when they are just about to get released on the 6th night so I had to have new nurses and that messed up the routine me and the other nurses had about meds, refilling my ice packs, my meals and everything, but we got through it. They were great as well. I was scared to leave the hospital because I was afraid I wouldn't be able to keep the pain down with just pill pain medications in leu of the I.V. type, but I knew I couldn't stay there forever. On night 6 I had the hiccups so bad I couldn't sleep all night long. They told me it was because when people have brain surgery they get the hiccups for some reason due to the brain membrane being cut. I didn't understand how that could be, but I went along with it. Also I noticed when I would get upset or scared I would get the hiccups also, so I would try to relax. After not sleeping for two nights due to the hiccups, I asked if they could do anything about the hiccups and they gave me a tranquilizer called Thorazine which helped, I got to sleep.

On the 7th day I was finally getting up to solid foods and I was feeling pretty good. Still worried a little about going home, but they said it was normal to feel that way. I could shower myself with my wife standing by just in case and I was moving slow, but I was doing it. All I could think about was a Taco Bell Green Bean Burrito while I was in there and there just happened to be a Taco Bell across the street. I knew where my first stop would be on the way home. I needed real food! Taco Bell was my new motivater.

On the eighth day it was time to go home. I got up, took a shower, ate and waited for the doctor to come see me about my discharge. Finally around noon he came in and asked, "are you ready to blow this disco?". I was for sure so they discharged me and sent me home with medications for pain, hiccups, constipation (pain meds cause these problems), eye lubricants, eye drops and stomach acid and a whole slew of medicine. I grabbed my cane, get well cards and headed to Taco Bell!!

When I got home my father-in-law had placed a Congratulations banner across the front of my house and he had placed a seat in the shower for me to sit on while bathing. It came in very handy. I also belong to a union and an awesome brotherhood and family at work. The union/people at work bought a nice arrangement of flowers for me to find when I arrived home. It was signed by "my union". I was so happy to be home where I could sleep in my own bed. My father-in-law had also taken my large 115 lb Rottie to his house until I felt more comfortable and stable on my feet and wouldn't be knocked over by him.


That first morning after I got home, my hamstrings felt VERY sore. I’m not sure why that was, but I could barely walk and I had marks on my body from where they had wrapped me up so tightly during surgery. I went for walks and went as far as I could each time. I started by walking with my cane about 25 yards and then I would head back to my house and each day I would try and get further than the day before. By the end of it I was just carrying my cane around.

We had friends bringing us dinners and lunches while I was home recovering. Jessica's friend Jaime even had a schedule of who would bring what when. It was awesome and we enjoyed every meal.

My wife would set her alarm and wake up every four hours to give me my medications and she had a little notebook that she would write the times and med names in. Never missed a dose.

Exactly 10 days after surgery I had my baseball stitches removed and because that side of my head was numb, I didn’t feel a thing. What an awesome stitch job Dr. Nutik did because as soon as the stitches were out, it was almost unnoticeable already.

About two weeks after the surgery I was still having some pretty bad headaches and I wondered if they would EVER go away. For some reason they would get worse at night so I called the doctor and they sent me to the Walnut Creek, California Kaiser for a CT Scan to see if there was a problem. If there was a problem they would have to keep me in the hospital again and I couldn’t take another night. Thank God, the CT Scan came back normal and I remember crying on my way out of there because I just wanted the trauma of this whole process to be behind me and I do NOT usually cry, it was probably the pain meds making me feel emotional. So they gave me an Anti-Inflammatory steroid and I felt SO much better the next day. There was finally hope on the horizon.

About 5 days later I found a scary pillow of soft swelling about 3 inches wide where my incision was. I thought I had somehow pushed the bone out of place that they had replaced while I was in surgery and that the fluid was leaking out. It felt like water under the skin so I called the neurosurgery advice nurse and they said it was pretty common and that I should elevate my head more while I was sleeping so I put some pillows under the mattress to raise my head up. The next day I was in for another CT Scan, just in case, and it came back normal.

The headaches still came every night even though I was taking anti-inflammatory (which I accidentally didn’t take as recommended) (I took much less than prescribed)and pretty strong pain meds. I ran out of the strong stuff so they gave me a small bottle of 500mg Vicodin. It didn’t feel like enough because I would have to take 2-3 of them for the headache to go away and I eventually ran out of anti-inflammatory. I called them to get a higher mg, but they wouldn’t budge. Basically they told me to try and get off the Vicodin, so I did and I started taking Advil. It worked. But it looked like the headaches were here to stay. Horrible headaches!!

A little bit of depression comes and goes. I think it’s from the pain meds.Sometimes I get discouraged and think it’s going to take forever to get better, but my wife brings me back to reality. She reminds me that I am better than I was last week and 100 times better than I was last month. She gives me examples of what it was like when I first got out of the hospital, like how much worse the paralysis was on my face, how I couldn’t walk anywhere, or eat regular foods and how swollen I was. It helps because I don’t realize all the improvements from the inside.

My facial paralysis gets better every day. Truly every single day I notice something has changed and improved. For a while I was tasting a metallic flavor in my mouth and the doc said it was from not being able to taste on the right side of my mouth. I guess it’s common, but I was worried that it was spinal fluid. Thank God it wasn’t and now I can taste more on that side. Also sometimes my face itches on the right side where the paralysis is and I can’t seem to satisfy the itch. A few days later that part of my face will feel normal. I think it’s the nerves waking up.

I got a checkup from “Magic Hands” on August 18, 2008. I had an MRI and then went straight to the appointment. When I got in there he pulled up my MRI and said that I was doing extremely well and that the tumor was only 1 centimeter now and that I had to have radiation at Stanford Medical Center to make sure it doesn’t grow back.

I have not had the radiation yet, but I know I feel lately like I have weight tied around my body and it’s hard to get things done. I just feel like I’m dragging around and I feel Dizzy sometimes. I work out almost everyday, lifting weights and doing the elliptical with my wife, but I still generally feel like this. I am only taking Advil now and it works okay. Every once in a while I’ll need a Vicodin.

Even though I feel like I’m dragging, I feel so much better than I did before the surgery. I look at pictures from before and I can see it in my eyes that something was wrong. I just didn’t look well. The pressure in my brain was so bad from the brain stem being pinched by the tumor and the spinal fluid not being able to circulate.

I am so thankful that the tumor was found and that they were so diligent about getting it out and having the best Acoustic Neuroma Surgeon in the world. People come from all over the world to have Dr. Nutik perform the operation and I can see why. I am grateful to have my life because of him.



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