I have mentioned doing this a few times, and I thought I had better follow through. This is my CK story, start to finish. It is not typical, because no AN story is typical; it is just one case, and one outcome. And, as with all ANs, the story is never really over; even twenty years later, things can change. Since it is a long post, I added some pictures too.
Pre-diagnosis:February, 2007: A bad cold that seems to get up into my ear. Ear pressure, a plugged up feeling, and I notice that my hearing really is weak on the left side. A hearing test six months earlier said the same thing, but it didn't really seem noticeable until now. After four weeks of this or so, I go to see the doctor. The nurse practitioner puts me on decongestants.
March, 2007: Still plugged up, and back to the doctor. This time the doctor himself prescribes some antibiotics, a brief round of steroids, and an antihistamine. We are going to get that middle ear to unplug, by gum. When this doesn't work, I start a regimen of steroid nasal spray, plus saline nose washes, plus some more antihistamine/decongestant stuff.
May, 2007: This is still not working, my ear is still plugged, I still can't hear properly. I go back to the doctor, who refers me to an ENT. I spend most of my time at the ENT's office doing a complete audiology exam. Besides the usual hearing test, they put a sound source against the base of my skull, so the sound will bypass the middle ear and go directly to the inner ear. When the ENT sees the write up, she has this to say: 1. My, what an interesting hearing test you have; 2. Start antiviral medication and heavy steroid medication, in case it is a virus; 3. Get an MRI just in case. When I ask about the cost of an MRI, she says it doesn't matter, I have to have one.
Diagnosis:
June 5, 2007: MRI. June 12, 2007: I receive "the call." The ENT says, in order: 1. You can stop the antiviral and steroid medications. 2. It is benign. 3. It is a small tumor on your hearing nerve. I say thanks for getting the word benign in early, and what do I do now? She refers me to another ENT/neurotologist, who can do skull base surgery. I leave thinking it will be a small operation, perhaps as an outpatient in the office, and go to see the ENT.
June 25, 2007: The next ENT suggests that wait and watch may lead to total loss of hearing, explains the surgery options, and also suggests investigating radiation. He also tells me I can get a copy of the MRI on CD from the MRI lab, which I do. We schedule another appointment. The radiologist's report shows the tumor as 8 mm, or 0.8 cm, in size; my hearing loss is about 50-60 db, with 85% word recognition.
July 8, 2007: I make my first post on the ANA forum. Oh my, how glad I am I found this forum! Things would have turned out so differently without it. Soon I am gaining a more realistic picture of surgery, learning about radiation options, and making friends with other AN patients at the same time. I go on several appointments in the weeks that follow, including one to a vestibular lab for ENG and ABR testing. It becomes clear to me that if I watch I wait, I risk losing my hearing, and that acting when the AN is small has some advantages. I am still on the fence about radiation versus surgery. I learn about CK, and in particular about CK at Stanford. I send Dr. Chang an email, and he replies on a Saturday, indicating that I would be a good candidate for CK. I send him a copy of the MRI and hearing test.
Decision:I also manage to calm down enough to do other things, including a short family vacation, and a business trip in August to Colorado. During one of the fascinating meetings in Colorado, I am doodling on my note pad, and start making a list. Left side, middle fossa surgery. Right side, CK radiation. I make entries for things like: Recovery time. Likelihood of preserving hearing. Likelihood of facial nerve or chronic headache issues. How long before it is over.
Oddly enough, though it was not my intent, that was the day I decided. Radiation would take longer to finish up; the post treatment effects can drag on for 6 to 18 months. But the initial recovery time would be shorter, the chance of preserving hearing would be better, and the risk of chronic side effects would be lower. When I was flying home from Colorado, I realized that I had decided on CK radiation treatment.
I called Stanford in August. Scarlett White, their appointment manager, called my insurance company. After I had faxed both parties copies of all the reports, they worked out the details. About a week later, I got a call that the procedure was approved, and I was set for September 10.
Others will tell you what a relief it is to make the decision and be on your way. I was impressed with Dr. Chang, I felt I had done good research on radiation treatment and Cyberknife, and I felt that I had done all I could and made the best choice for me. The actual outcome was now out of my hands.
Treatment:September 9, 2007: Flew to San Francisco, where fortunately I could stay with a friend the whole week. Monday, I drove down to Palo Alto, and met Dr. Chang and Dr. Gibbs, plus a platoon of interns, residents, and technicians. We all had a good chat, and discussed everything about the treatment. Dr. Gibbs looked me in the eye and said she would be happy to offer me CK radiation treatment for my AN. I said yes, I didn't fly down here just to talk about it. I guess that is part of the protocol. I drove home in the afternoon.
Tuesday I drove down early. This was the hardest day, because they asked me not to have morning coffee before all the scans. I was a little grumpy about that. It seemed like I went all over the hospital that day, but did get a CAT scan and an MRI before the day was through. Chang and Gibbs put the scan data into their computers, and by that afternoon, had a treatment plan worked out. Dr. Gibbs showed me on one of the images the separation between the "hot zone" of radiation and my cochlea (hearing organ). Looked good to me. I also met Larry, who fitted me up with a mesh mask. The stage was set.
Wednesday, I drove down again, this time about noon. Larry and Eileen fussed over me on the table, making sure my legs were comfortable, and the mask was positioned just so, and that my CD was in the machine. Then they went outside and closed the door. Over the speaker, they said they were doing a few more checks. Then Eileen said "we are ready to begin." I said "Okay" - what else could I say at that point? I lay still for 45 minutes, listening to the hum of the machine as it moved around over my head. Peeking out does not harm your eyes, but if you catch it staring right back at you, it can startle you. I preferred eyes closed. Afterwards, a doctor presented me with a small blue pill, Decadron, and a paper cup of water. Then I drove back to San Francisco.
Thursday and Friday were nearly identical to Wednesday. On Thursday, Eileen claimed that I moved, and stopped the machine for a bit. I swear I didn't move, but I didn't protest. On Friday, after the last one, I shook hands with Dr. Gibbs, said good bye, and that was it. On Saturday, my friend and I did an easy hike on Mt. Tamalpai, and on Sunday I flew back to Portland.
Outcome:December 2007 was not a good month for me. Around Christmas, a bad cold got worse, and I experienced swelling pressure in my AN ear. I was quite miserable, and stayed home and mostly in bed right through Christmas. (I did manage to write a nice Christmas poem, though). I almost called my ENT several times, to ask for steroids to try to reduce the swelling. My experience with Prednisone back before diagnosis probably kept me from doing so, because I really didn't like it. If it had gotten bad enough, I would have called. I later learned from a member of Dr. Chang's team that swelling usually doesn't cause permanent damage, and that steroids are mainly to provide relief to the patient.
I have had occasional brief episodes since then, but not lasting longer than a day. Taking an Ibuprofen was all I needed. In March 2008, I had a follow up MRI and hearing test. I lost a little more low frequency response, and another 6% word recognition, but otherwise my hearing is basically stable. The radiologist's report on the MRI indicated that the AN had shrunk a little bit, down to 6 mm. In April, I started wearing a Unitron Moxi hearing aid, which does a good job of giving me useful hearing in my left ear again. It is particularly good for conversations, and I have stopped saying "what" so often.
My left side hearing may go eventually, but I have certainly bought some more time with it. If it does go, the prospect of a BAHA sounds pretty good. I will be having 6 month or annual MRIs for a while, but I feel confident that my AN story is basically over now.
Conclusions:"How shall I treat you, let me count the ways," we might say about acoustic neuromas. Every patient has to grapple with the same basic questions: get treatment or watch and wait; surgery or radiation; which doctors to go to; what kind of surgery, or what kind of radiation. I can only offer my own views.
I would watch and wait if nothing much was happening with symptoms, or if say hearing was already gone, and nothing else looked to be in jeopardy. I was inclined to act sooner in my case, and would be in others, if hearing or something else appeared to be in jeopardy, and waiting might mean missing the chance to save it. In general, ANs are easier to treat when they are small, with fewer complications.
If I had done surgery, I might well have chosen translab, and sacrificed the hearing. Hearing preservation seems to work best when the hearing level is high. Translab seems to be the safest surgery, at least for smaller tumors, with low rates of facial nerve damage, headaches, and other side effects.
I would probably not choose radiation for a larger tumor. 3 cm is the standard cut-off, but I would be nervous about it above 2.5 cm. Pressure on the brainstem is a serious thing, and not to be taken lightly. Besides size, the location of the tumor is important to consider. For the big tumors, retro-sigmoid surgery plus radiation seems to be a sensible and effective combination.
For many people, the choice between radiation and surgery comes from the gut. For some, surgery sounds clean and decisive, while radiation sounds spooky and troubling. Surgeons are often heroic in the movies; radiation oncologists rarely are. For others, surgery sounds invasive and aggressive, while radiation sounds high-tech. Surgeons are often egotistical, while radiation oncologists are likely to be friendly nerd-geeks.
If you fall into one of those camps, and I think most people secretly do, then you will end up deciding accordingly. I think that happened to me, and to others I have talked to, and I think it is just fine. It is essential that you believe in your treatment plan, and your doctors. Don't beat yourself up over it; just go with your instincts. The members of this forum always support every patient in whatever decision they make about their own treatment.
If you do decide on radiation, then there is the fun debate about which kind to have. I could have had Gammaknife treatment in Portland, where I live. In fact, I could have had Cyberknife at a newly opened CK center in Vancouver, WA, just across the Columbia river. So why did I go to Stanford for CK?
GK and CK are very similar for treating ANs. I chose CK because it has a slightly better chance of preserving hearing, and because it doesn't involve a metal head frame. The third kind of radiation, FSR, seems too drawn out to me, and has a slightly lower chance of preserving hearing. I went to Stanford because they have done over 700 ANs, and Dr. Chang was responsive to emails, and I have a friend who lives nearby. None of these are important enough reasons to be requirements, and I would have accepted doing treatment locally, and doing GK or FSR if necessary. I am glad I had the opportunity to do CK at Stanford, though.
Epilogue:And now I have become a moderator of the ANA forum. Although it is the sort of honor where they say congratulations and hand you a broom at the same time, it is an honor nonetheless, and I am more than happy to do it. This forum means too much to me not to be a part of it in every way I can. To all my new friends here, I say thank you.
Steve
