Crystal’s Story,
In February 2004, after not being able to hear my daughter well on my right side, some tinnitus, and “feeling of fullness�, I was diagnosed by my ENT with a 13mm X 10mm acoustic tumor.
After initial shock, hubby and I investigated options. We met with a doctor in Seattle, my ENT recommended, who is top in his field in my neck of the woods. At that time he was not familiar with cyberknife surgery(he called it a marketing term). After much research hubby and I decided to go with Stanford Cyberknife treatment.
In April, 2004 we flew to Palo Alto, I had the treatment with the terrific team down there. They played music for me during the treatments and other than my anxiety, I had no side effects. The feeling of fullness in the ear went away over the following months and I could hear better. I had occasional tinnitus.  Follow up MRI’s showed the tumor turned “dark� in the middle as it is supposed to. I got on with my life and forgot about it.
In March of 06 I started getting some of the “feelings� back.  Fullness in the ear, a minor twitch occasionally in one eye, tinnitus returning. A June MRI showed a 1.5cm tumor. The MRI technician reported it unstable. Stanford said that that small of size change was inconclusive, it could be an MRI anomaly, and they felt it continued to be stable and not to worry.
In August of 06, I started getting hemispheric facial spasms engaging the whole side of the face a couple times a week. My hearing was failing and my balance was just wacky. By October, the spasms were a multiple times a day and affecting my ability to work. I called Stanford who wanted to put me on steroids and wait and see. The steroids produced massive facial spasms so I stopped right away and went to my GP, who ordered MRI’s and the works. Stanford asked to be included in the MRI results, and this time, the tumor was at 1.9cm and touching the “Pons�. Stanford said it was indeed growing, (very sorry they did not recognize this in June) they did not recommend cyberknife treatment again given the hemispheric facial spasms would likely become worse with a radiation treatment, and recommended surgery, “you probably would not want to wait past December as it is small and easily operable at this point.�
I will pause at this point to say that Stanford is terrific, they diagnosed me based on statistics and probabilities. They called me back promptly and the nurses and Doctors spoke with me at length on the phone and through e-mails. I also must note that each of us knows ourselves. There was no doubt in my mind that this thing was either growing or I possibly had another (gasp) brain tumor, which is why I went to my GP. I could feel the fullness, the tinnitus was loud, I was totally off balanced and living with the facial spasms. At the end of the day we each must take responsibility for our own health.
Time for more doctor interviews –
Stanford:• Q: What was the outcome of other patients “like me�? A: Out of 600 cyberknife treatments, they had 4 failures and I was number 5. Of those, 3 they operated on who ended up with facial weakness; one went else where for surgery.
• My cyberknife treatment in no way should affect my chances at a successful surgery.
• Doctor recommended translab given my hearing was gone and that was highest probability for saving facial nerve. He gave me an 85% chance of saving facial nerve and indicated it was an 11 hour surgery.  I could be back to work in 2 to three months depending on how I felt.
• Facial spasms would go away after surgery
Seattle Doctor• Seattle doctor had trained many many years earlier at House ear. He had lots of credentials, most of which looked dated to me. I have to confess I wanted someone who was a clear leader in this field but new enough to be in the “midst of a fabulous career� not to be towards the end of one.
• With my radiation treatment, he gave me a 50% chance of saving facial nerve, then took that back – with the fractionated radiosurgery possibly a 70 to 80% chance. He wanted to do retrosigmond for “the most optionsâ€? so he could “graftâ€? a nerve for my face if necessary.ÂÂ
• He did know what cyberknife was this time around.
• Surgery time would be 3 to 5 hours and I should be back at work in one month. He would screw a frame into my head to hold it still during the surgery which usually hurt more than the actual surgical area.
• I asked him how many surgeries he had done like mine, he was evasive and did not answer.
• Facial spasms would go away after surgery.
• Not having to fly out of town for surgery was a big draw, his reputation was a big draw, I was not comfortable with his evasive answers, nor his one month firm recovery time period.
House Ear in LA• Reputation wise, these guys were top in their field. My husband and I were called by both of the perspective surgeons within 24 hours of contact and they were remarkable. I chose a neurosurgeon who also performs radio surgery.
• My cyberknife treatment did indeed increase the risk for facial function loss. Rather than a 90 to 95% success I was in the 80% range.ÂÂ
• Doctors recommended translab given my hearing was gone and that was highest probability for saving facial nerve. He gave me an 80% chance of saving facial nerve and indicated it was a 3 to 6 hour surgery.  I could be back to work in 2 to months depending on how I felt. No promises on the Facial Spasms going away, but typically they would expect them to.
• Q: “how many have you done� A: 450. Q: How many with radio surgery? A: 15 How many of those lost facial function? A: “None, but no promises.�
• They explained, in detail grading the facial functions, what they would be aiming for and how they would achieve it.
• These guys do a few a week where the Seattle teams do a few a year.ÂÂ
• They indicated with the large number of surgeries a year they do, they are seeing a 30% fail rate on radio surgery.
Decision was pretty easy for Hubby and I. Although Stanford is top in their field for Cyberknife we both felt that it was clear, House Ear was the best possible choice for conventional surgery. Hubby was ready to pay out of pocket if insurance did not agree, but there was absolutely no issue and we booked the surgery immediately. I encourage everyone to interview their doctors and ask pointed questions about their history and success rate. There are doctors in Seattle, including the one I interviewed, who have done wonderfully successful surgeries. If I was going to lose my facial nerve, it was going to be with a surgeon hubby and I both felt statistics wise gave us the best chance, or I would be rethinking my decisions for the rest of my life if the outcome was less than stellar.
Surgery with House Ear at Saint Vincent.3 weeks before. Do lots of yoga, jogging and weight lifting. Cut out caffeine and alcohol. I want to go into this surgery in top physical condition. I eat lots of salmon and blue berries. I especially gently stretch the neck every day as I hear that for most, this is the biggest pain area after surgery.
December 5th • My 14 year old daughter is left under the supervision of her 25 year old sister. Lots of hugs and kisses and we are on our way.
• We fly in from Seattle to LAX, and check into Seton Hall, a guest center provided by Saint Vincent Hospital for recovering Patients and their Families. Very plain but has everything we need.. Our plan is to stay 2 weeks.ÂÂ
• Met my Doctors and were further comforted with their obvious extreme competency. They check all of my functions face, etc.
• We meet another couple, at Seton hall(I will call them Sue and Joe, although that is not their real names), who will be having surgery the next day with House but different doctors. Sue will be translab like me. Tumor is same size as mine. She has hearing but wants to have best possible chance for facial nerve preservation.
December 6th • I was given a complete physical. We had a hiccup. The internist Doctor discovered, with disbelief given I am a very active, healthy, athletic person, a heart issue. He said surgery was off…. (gasp) unless he could get treadmill ekg test with imaging by a heart doctor by the end of the day(it was 2PM at this point).
Me: You mean my heart is not supposed to flutter like that when I am nervous Dr.: no, that is an abnormal heartbeat. Haven’t you seen a doctor for this before? Me: yes, but it never happens when I am the doctors and none of them would believe me. It only happens when I am scared. They just told me it was anxiety and sent me to a councilor for Anxiety relaxation training. I have been living with this for years. Dr.: (smiling) well, sometimes these things are hard to diagnose unless we catch them happening, like now.
• I heard his assistant on the phone frantically calling all over.  They find a doctor, do all the tests. No blockages, My heartbeat returns to normal after I get on the treadmill and relax with the wonderful exercise. I have an “anomaly� in which one of my valves does a twisty bend when I am nervous, resulting in the heart “flutters�. They even have pictures of it doing it. (geeze these guys are competent!)
• Surgery is ON! My mother has also arrived and will here for surgery. Hubby buys me a fuzzy bear blanket to cuddle for pre-op stuff.ÂÂ
• Later that evening, I run into Joe and ask about Sue’s surgery today. Her tumor was larger than expected from the MRI. Surgery was about 6 hours. Her tumor was wrapped around the facial nerve. Neck hurts a lot. Sue is very nauseous. Lost her facial function, but they are hopeful it will come back by a 6 month mark. They did remove all of her tumor.ÂÂ
December 7th• Check into Saint Vincent at 5:00am for surgery with fuzzy bear blanket in tow. I am scared to death. I French braided my hair to one side to keep it totally tucked away(I have long hair)Mom and hubby are keeping me calm. I strip everything and get into their gown. A lady asked me questions forever! It is 7:15am and Surgery is supposed to start at 7:30.
• Finally they rush me upstairs on the gurney, still cuddling my blanket. I see one of my doctors.  Hubby hugs me goodbye. We both have tears. Doctor tapes my hair so he doesn’t have to cut too much off. I hear the razor going. The Anesthesiologist asks me about the heart issues a bit, puts in a small IV. I start to relax and I am out.
• Surgery was 5 hours.
• Part way through one of the Doctors tell Mom and Hubby: 99% of tumor removed. They leave part of it there to preserve the facial nerve. The part that they leave is “fried� by the radiation so they are not worried about leaving it.
• I wake up with a big bandage around my head. My neck does not hurt but my arms do. Every few minutes they ask me to pucker, close my eyes, raise my eyebrows. Everybody is happy. Facial nerve is saved.
• I get a little nauseous from the anti-seizure medicine. I get very antsy from the steroids. They give me Pain medicine.ÂÂ
• Later: They get me into a chair.ÂÂ
• Every time hubby and Mom visit in ICU I get nauseous. I ask hubby for Mom to stay away. Doc says it’s because I am looking at them. When they move around it makes me a little sick given my balance nerve is adjusting.
• I have them call hubby to bring me my soft down pillow and my blanket.
• They move me out of ICU. Nausea is gone.
December 8th• I get up in a chair a few times. I get the catheter out. I learn how to unhook myself from the wall so I can pee without nurse’s help.
• Sue and Joe who had surgery the day before me visits. She looks great even with the facial nerve loss. You only notice that her eye does not blink, and she smiles to one side, but looks fine. I see Sue walking like that and know that so will I, tomorrow. Her bandage is off as well.
• Lots of steroid jitters.
• Doctors check on me and test my balance nerve. It is doing fab. I have almost totally adjusted already. The yoga I did before surgery and the complete shambles the nerve was in before it happened made it “easy� for me.
• My right eye is very puffy and swollen. I have bruising down the side of my face. My jaw is sore. Can’t yawn. My jaw is also stiff. I force myself to eat a few bites of food all day long. I am getting really skinny.
December 9th• Bandage comes off.
• I get some PT and walk around the floor. Sue and Joe are also walking around. She is very chipper today.
• My hubby walks me around the floor a few times.ÂÂ
• Eye still swollen and puffy.
December 10th• Doctor says I can move to Seton Hall today. Sue will get out today too. So far so good. I am a text book case for recovery. Sue’s husband must fly home to take care of their kids but her father is flying in to take care of her.
• I get a wheel chair ride from my room, under ground, all the way to my room at Seton hall. It is nice to be in a real bed and feel a little normal.
• Mom gets me settled in and will go home tomorrow.ÂÂ
December 11th• I don’t sleep well and move around a lot to find just the right position so my head does not hurt. I am up a couple hours then back down. Hubby keeps me fed and helps me take a shower. Feels good. My brain is working really well. Fog I had before surgery is gone. It’s like a part of my brain has been healed. This surgery was a very good thing. It is nice to smile and not have the facial spasms.
• I see Sue and her Dad in the Kitchen area on the computers. She looks great today and is bouncing back wonderfully. They are moving to the holiday Inn tomorrow.
December12th• We walk over to hospital for breakfast. Fresh air and sun feels wonderful. Hubby is a peach. Did laundry and is constantly caring. My jaw is still bruised and stiff. Swelling is almost gone but some bruzing remains.
• The Ambient pills they gave me for sleep are giving me hallucinations. I asked Sue and she says she was having conversations with people in her sleep. I decide not to take them any more.ÂÂ
December 13th • Finally get a full 8 hours sleep. My brain feels more healed every day. It shuts down occasionally and I just cover my head and sleep it off.
December 14th• I showered by myself today. Met another couple in the Seton Hall kitchen (Ida and Sam) from Detroit. They are originally from India and he had his surgery the same day I did. We shared neurosurgeons but different oncologists. Same tumor size as mine and he is a software engineer like me. They had to battle their insurance to come here but took it to the top and won. He had retrosigmund and got out of the hospital the day after I did. He gets his stitches out tomorrow.
• I get my stitches out. Doctor says I am doing great and to have a follow up MRI in a year. He says that I can fly home right away if I want as the stats for CFS leak at 1 week are one in 1000. I don’t feel I have the stamina to fly yet. I have a lot of pain today.
• Met a Mother and Dad along with their cute 5 year old granddaughter in the Seton hall kitchen from Montana. Their daughter has been in Saint Vincents for a full week. She had translab like me, but a 3.5 CM tumor. She was in surgery for 9 hours and had some complications along with severe neck pain. Her facial nerve came out fine.
December 15th• I give my flowers to the little girl I met yesterday for her brave mom.
• We rent a car and move to West Hollywood. I still need to rest a lot.
December 16th• We go into holly wood and walk around at the mall a bit. See the Chinese theater with all of the hand and foot prints. I shop a little. Go back to hotel and crash
December 17th• We got to Venice beach and stay in another hotel. Hubby does everything. We decide to fly home on Monday and Hubby makes sure I will have a wheel chair at the airport so I don’t get too tired.
December18th• Hubby drops me off at check-in while he returns the car and gets luggage checked. I have my pillow and blanket and cuddle in a chair. He is back in a jiffy and gets us checked in and me into a wheel chair.
• Hubby gets chosen to be whisked away and searched at security. My wheel chair is for distance not disability so I walk through security. My purse suddenly disappears along with my hubby. Now I am totally confused. Some how the wheel chair guy gets me re-connected with hubby. He has my purse!
• Plane is delayed so I lay on floor and sleep at hubby’s feet. Tons of other people on the floor also as many planes are delayed due to bad weather in the northwest over the weekend.ÂÂ
• We get on the plane. I am uncomfortable but find a position that I can sit in with out pain.
Finally we are home! I show off my scar to my kids. I am stilll slightly bruised at the side of the mouth where they had electrodes monitoring my nerves during the surgery. I remind my self daily to take it easy. I would like to go out and excersize, but must not do anything strenuous until I reach the one month mark safely.ÂÂ
God bless this board and all of its members for the support and recommendations on not only surgeons, but stuff to take with me to keep me comfy, and the words of encouragement about what can be quick recovery’s coming out the other side. It has been a life altering experience for me that makes me relish just lying in bed, pain and tumor free.
Deepist regards,
Crystal
