Life After Cyberknife Treatment For My Acoustic Neuroma
In this section, I describe the progression of my symptoms after my Cyberknife treatment at Stanford in August 2007. I will update this page periodically so that readers have up to date information on my condition.
My family and I returned to Los Angeles from Palo Alto on the Friday night of my last Cyberknife treatment. Immediately upon my return, I tried mightily to resume life where I had left off before my diagnosis. The next evening, I went salsa dancing with friends and family. On Monday, I was relieved to be back in the office, resuming work life. I was hoping beyond hope that my recovery from Cyberknife would be as easy as the treatment itself. Alas, I was mistaken.
It did not take long for me to succumb to my body’s insistent demand for quiet and rest. Within a week or two of treatment, my schedule consisted of a direct shuttle from my desk at work, to my couch, to my bed. The fatigue was not completely overwhelming. I still got up, went to work, managed certain tasks. But I was operating at well below capacity.
By the second month after treatment, my symptoms had intensified and become more burdensome. Pre-treament, the worst of my symptoms was the intermittent episodes of dizziness that would strike for a few hours or sometimes even days at a time. Apparently caused by inflammation or irritation of the balance nerve, the sensation was something like the spinning you might feel after getting off a Gravitron. During these episodes, I would become quiet and withdrawn as my mind wondered to dark places, convincing itself that the dizziness would never fade and that I would succumb to a lifelong state of depression.
To my horror, these dizziness episodes returned and even intensified around the second month after treatment, accompanied by other symptoms such as intense pressure in my temples and intermittent tinnitus. A kind of buzzing or ringing sensation coursed through my skull; it was as if a battle was being waged in my cranium. Each day my symptoms would migrate or mutate, recede or advance.
To address the balance issues, nurses at Stanford advised a taking 4 ibuprofen tablets three times a day. But because I had experienced these episodes before treatment as well, they couldn’t say whether the episodes would fade as the effects of the radiation passed or persist indefinitely as a constant reminder of the mass abiding in my head.
For three or four days in early October, my head felt like it would explode from the dizziness and pressure in my temples and ears. When I emailed Dr. Chang, he advised that the flair-up was likely due to treatment-related inflammation of the tumor and would likely fade in time. He even indicated the intensity of my flair-up could mean my tumor was dying more rapidly than average, suggesting my misery was actually be a positive sign. He advised that problems with balance tended to be temporary and usually receded around month 8 after treatment, but sometimes could persist for a year or in rare cases even two years. I posted questions on the ANA Patient Forum asking others about their post-CK experience, and received some assurance there as well that my experience was not entirely unique and that relief would likely come in time.
One of the toughest things about dealing with post-treatment symptoms is that no one can say much about them with any certainty. Doctors can tell you other patients' experiences generally or what may or may not be going on inside your head. But they cannot tell you the symptoms will go away if take this pill or that medication. Every AN is different and every patient is different, which means everyone's symptoms are different. And so all you really have to hang on to is hope – the hope and belief that things will improve and that eventually you will have something resembling your former life back. For that reason, these notes from Dr. Chang, and the messages from other patients who have been through the same experience, were critical, providing reassurance to counterbalance my tendency to keep imaging the worst.
Around late October, my symptoms mercifully receded and I began feeling about as good as I’d felt since my diagnosis. The dizziness seemed to fade almost completely, remaining just as a subtle background presence, putting to rest any dream I might have of walking a tightrope in the local circus, but otherwise mild enough to go on with life as normal. I had a sense that things in my brain were beginning to settle down and stabilize. Things were going to be okay.
But the respite turned out to be temporary, the neurological equivalent of passing through the calm and peaceful eye of a hurricane.
In November, my symptoms flaired up with renewed intensity. Dizziness, head pressure, ear ringing. And palpable, heavy fatigue. I would get to work late and leave early. My head felt cloudy, murky and heavy. Any sort of physical exertion was out of the question. I would drive past the gym on my way home from the office, do an internal check and realize I could barely even think of working out, let alone actually work up a sweat.
I soon reached the point that I just wanted relief that ibuprofen could not deliver. And not only that, I had some concern (I have no idea if it was justified) that the post-treatment inflammation of my tumor would itself cause some damage.
I contacted Stanford and was given a prescription for a tapering regimen of Decadron at relatively mild dosages (2 mg/1 mg/.5mg). I had heard quite a bit of lousy stuff about this drug and indeed, its potential side effects reads something like a comprehensive compendium of every conceivable thing you don't want happening to your body. All of my life I have had a visceral opposition to medication of any kind. But that too faded in the face of my symptoms. Reluctantly, I started the steroids regimen.
The drug brought relief fairly quickly, without much in way of side effects. For a month or so, through mid-December, I was free of most symptoms and was glad for it. Again, though, the respite was short-lived.
Late December arrived and I flew to New York to spend Christmas with my family. A couple of weeks had passed since I'd completed the steroids regimen and sure enough, the symptoms returned. For another several weeks, through December, I endured probably the worst of my post-treatment symptoms in terms of episodes of dizziness, fullness and murkiness in the head, and ear ringing and buzzing. It was a tough holiday season.
Having seen the depths of my discomfort, my family encouraged me to get relief again, and when the symptoms refused to settle down though January or so, I called Stanford and got another prescription of Decadron – at six times the dosage (12mg/8mg/4mg). This is when the fun really began.
The medicine worked like a charm, obliviating the tumor-related symptoms in fairly short order. I soon realized, however, that at this dosage, the Decadron was the medical equivalent of dropping a nuclear bomb on a jungle band of guerilla rebels armed with Soviet-era machine guns. It gets the job done for sure, but the fallout can be a little tough. I could not sleep. And I could not stop eating while taking this medication. For more than three solid weeks, I was awake all day and all night and spent most of that time eating. It felt like a zombie in a perpetual search for food. After a lifetime at around the same stable bodyweight, I gained a good 15 pounds in a matter of two weeks. And this was not sexy muscle weight.
But still, the tumor related symptoms had abated again and more time had gone by, meaning my body had had more time to heal and I was closer to the points after treatment where all of these sensations are supposed to settle down.
In February, I had my first follow-up MRI and hearing test. At last, I would be able to see what damage the Cyberknife had wrought.
The tests results were quite positive. The MRI showed fairly substantial post-treatment inflamation of the tumor (from 2.6 cm. to around 3.0 cm) accompanied, however, my substantial darkening within the tumor, suggesting a rapid onset of necrosis. In short, the test confirmed Dr. Chang's hypothesis: my intense post-treatment symptoms were in fact caused by tumor inflammation caused, in turn, by the very quick and dramatic response of the tumor to radiation. The thing was dying more quickly than average.
On the hearing front, I was thrilled when the audiogram revealed that my right-side hearing levels were essentially unchanged. Awesome.
I was not out of the woods on hearing or tumor control, but each day was bringing me closer.
After the Decadron regimen, things never got as bad as they were in December and January, but nor were they particularly great. There was definite improvement. My energy levels were up and I even made some tentative forays to the gym. But I was still operating at maybe 60 or 70% capacity.
And then March and April rolled around.
This was around Month 8 after treatment and my level of wellness improved significantly. It happened quite suddenly, almost overnight. My baseline condition, my "normal," went from not so good to as good as I'd felt in a long while. The balance issues (always the worst problem) faded again to a vague background presence. And my energy levels started to return to almost normal.
Slowly but surely, in the weeks that followed, I started to resume activities I had given up since treatment. Miraculously, I started jogging again. In the months after treatment, I had essentially written off running as something that would no longer be possible in my life. The balance issues made the bouncing simply intolerable. In prior months, I had made some tentative attempts to break into a jog during hikes, but after just a few strides, I would end up bent over, my entire world spinning, feeling drunk and about to hurl. Now, I could actually jog for a couple of miles and feel nothing except elated.
One Friday night, I was out at a bar with friends until 1 a.m., an inconceiveable event just a few weeks before. I started salsa dancing again – a dance involving spinning, usually in a crowded room with loud music in it. I was making enormous strides. My life really was getting back to normal.
July 2008, nearly a year out of treatment, and at the start of the month, my life looks close to normal. Physical exercise is a regular part of my routine. I jog, lift weights, bike, and dance salsa. I go to music concerts. On July 19 – the one year anniversary of my diagnosis – I post my reflections on this Acoustic Neuroma journey on the ANA Patient Forum.
And then, right around that time in late-July, I began experiencing another resurgence in symptoms. Not as bad as the sensations in Months Two through Six. But no fun either. Mainly I am talking about increased dizziness and fullness in the head and some morning headaches that go away with ibuprofen. The combination makes me sluggish, a little low on the energy scale and, truth be told, a little dejected.
I find the keys to feeling well are simple: regular exercise and getting a good night's sleep. It doesn't erase the symptoms, but the endorphins and energy generated from aerobic exercise powerfully counteract the dizziness. I try (with mixed success) to run regularly in the mornings before work and to hit the sack a little earlier at night. I have also started taking a Daily Multivitamin and Omega-3 Fatty Acid and Co-Enzyme Q-10 Supplements, the latter of which was recommended by an acupuncturist as having strong antioxidant and energy-boosting qualities. Hard to tell if the supplements are having any effect, but they can't hurt. I hope.
I called Stanford to speak with the Nurse Practitioner, knowing in advance what she'd say: that post-treatment symptoms are unpredictable, there is no way to know if the symptoms will go away, some patients continue to have them permanently after treatment, etc., etc. And then she'll dangle before my eyes the only (chimerical) solution in her toolbox: steroids. And sure enough, that's exactly how the conversation went. I have to say I have been underwhelmed by Stanford's efforts in the area of post-Cyberknife patient care. They could do a much better job of informing and guiding patients through the symptoms. Given the number of patients they treat, they should be the world's leading expert on post-treatment Acoustic Neuroma symptoms and the different tools available to deal with them. And they should have a single nurse whose job it is to know everything there is to know about post-treatment AN symptoms.
I am resisting mightily the urge to quash the symptoms with steroids. I do not want any more toxic substances entering my body. I want to exercise, eat well, stay positive and let my revitalized body do the work of healing on its own time.
I carry on with work and life. The symptoms can be discouraging at times. But my coping skills have improved. I know the episode will pass with time. I am taking it in stride. When I feel the urge to pity myself, I put the kabbosh on it. Nothing good can come from that.
One Year Check-Up (Updated: September 9, 2008)(top))
Great news. I had my one year MRI on August 18, 2008 and received word from Dr. Chang a few days later. My tumor is smaller than it was six months ago and stable (or perhaps even a bit smaller) from the time of treatment. The tumor is further blackened, a clear sign of tumor death. Overall, Dr. Chang was very pleased with the results.
We discussed my balance issues. I told him I am currently in the midst of a month-long recurrence in my balance symptoms. He reminded me that the tumor is still responding to treatment and that symptoms will tend to shift in the first 18 months to 2 years after treatment.
I braced myself and asked about my worst case scenario: what if the balance symptom is permanent?
He told me that was unlikely and that he would expect things to settle down over the next year. He also said he'd had patients experience far worse balance issues prior to treatment who, after treatment, were succesfully managing their symptoms with vestibular exercises. But he suggested that I hang tight for the time being as things continue to settle down. Amazing news.
Wish he'd send a memo to the nurse I spoke with earlier in the month.
I also have a follow-up audiogram and got more good news: hearing is completely stable from the time of treatment. Excellent!
With a year gone by now, I find myself reflecting and even second-guessing the Cyberknife choice. There is, I think, a temptation to believe that if the mass had been removed rather than zapped, I wouldn't be experiencing any of these lingering issues. I need to remind myself that I researched this issue thoroughly. My bottom line conclusion was that on average, quality of life is better after radiation. I think this is especially true in tumors like mine, which are big enough to put hearing and the facial nerve at serious risk. I was looking at near certain deafness in my right ear and a good chance of facial nerve damage in surgery, on top of the less tangible symptoms that, as best I can tell, accompany surgery as well as radiation. So overall, I still think the choice was the right one. And I will think that much more as my symptoms continue to improve over the coming months.
At last, the symptoms
have receded! The flare up of imbalance, which I described in the previous section, had its way with me and has saw fit to move on.
So now what I am left with is that vague and lingering sense of head pressure and imbalance. When the symptoms recede like this, my energy level goes up and there is greater clarity in my thoughts and actions. It's as if the world, which was slightly blurry beforehand, has become sharp and clear. Like someone pressed an autofocus button in my head.
Everything looks a little and feels better.
But I still don't feel "normal." I'm operating at maybe 85% capacity. My daytime life of work and exercise is unchanged. Nightlife, though, has taken a hit. Frankly, when my symptoms are acting up, I'm usually ready for bed by 9 p.m. and even now, I still feel pretty tuckered out by the end of the day. But on the whole, I'm back and it feels good.
It's now coming on November 2008, a full fourteen months after my treatment. My symptoms are remarkably stable at this point, as I described in my last update. No flare-ups of dizziness. Once in a while, I feel a little pressure in my affected ear, like it needs to pop or something. I become so fearful in those moments that my hearing might just vanish. But that's paranoia. In fact, my hearing has remained unaffected by the treatment, which is a great victory.
There is still this lingering "tumor-feeling" in my head – a kind of head-fullness, light-dizziness type sensation. If it would only go away. But it seems like it is here to stay. At least for the time being. My hope is that slowly and gradually, as the tumor completes the process of necrosis and my body continues the work of healing, one day at a time, this sensation will recede incrementally. But for the time being, all is good.
Surprisingly and amazingly, the month of November brought another significant leap forward in my sense of well-being. Towards the end of the month, I travelled to Italy and realized that my dizziness and the general "tumor-like" sensation in my head had reduced dramatically. On several occassions during my trip, I turned to my dad, with whom I was travelling, and said, "Dad, I feel normal." Dr. Chang told me that my symptoms would continue to improve during the first two years, but I confess that I have been skeptical. Turns out he was right (go figure). The dizziness is so minor as to be basically unnoticeable, except once in a while at night, when I'm already very tired. The head wonkiness also has faded to the point of imperceptibility. In fact, when I think back on my trip to Italy, I realize that I did not think of my tumor at all, except to note how I was longer feeling its presence.
I would say that I'm at around 90-95% capacity now, with the only deficits occuring when I'm tired or stressed. I feel hugely blessed and grateful and am looking forward to reaching still closer to the 100% mark.
Month 16: Back On The Dance Floor (Updated: December 30, 2008)(top))
Last night, after a 15 month hiatus, I made my US salsa dancing comeback. I spent the evening spinning and sweating on a loud dance floor with friends. On the way home, I thought of how blessed I am and how I want to share this miracle with readers who have an AN and might be wondering how their life will change as a result of treatment. Answer: God willing, very little. I know this site is supposed to be anonymous (I'm thinking of changing that policy soon), but I want to post a video nonetheless. This is me salsa dancing last month. I was in Sicily with my dad, and my Italian cousins, it turns out, are big salsa dancers. They took me to a club in Palermo, where for the first time in more than a year, I got my salsa groove on. I am healing. And you will too!
Month 20: Still On Track (Updated: April 8, 2009)(top))
I received the results of my latest MRI (taken February 13, 2009) and audiology exam: all positive. My MRI indicates that my tumor size is stable. Still not out of the woods (that will take another year or two, I guess) but this is good news. On the hearing front, my right-side hearing remains unchanged from the time of my treatment. I have about 15-20% hearing loss at the high frequencies. My left-side hearing is perfect.
I recently experienced a mild recurrence of symptoms: a mild sense of dizziness and some numbness in my right cheek. I was in denial about them for a few days before finally emailing Dr. Chang, who said the numbness was likely due to some temporary inflammation of the trigemenal nerve and that it was not uncommon for dizziness to recur in the 24 months after treatment. He seemed confident that the symptoms would pass and sure enough, in the past couple of days they seem to have receded. Water and exercise seem to help. No surprises there.
So overall, my healing is proceeding apace. I will check in again in a month or two.
Month 22: (Almost) Forgetting About My Tumor (Updated: June 5, 2009)(top))
Incredibly, I no longer have any symptoms. There is no dizziness, no facial numbness (or any other facial issues), no head wonkiness, nothing at all. I feel completely and utterly normal. And I have felt this way for the past two months, which is why it's taken me so long to update the site. The simple, wonderful fact is--I don't think about my Acoustic Neuroma any more! It does not affect my life. In April, I went on a 5 day trek in the Peruvian Andes - high altitudes, rigorous uphill walking for 8-10 hours a day. Not once did I think of my tumor.
I am grateful and humbled and I wish you all the same good fortune. Please contact me if I can help in any way. I will post again in another month or two, hopefully with nothing new to report!
(P.S. That's me on the right!)
Month 23: Spoke Too Soon (Updated: July 7, 2009)(top))
This is a major bummer: I have been experiencing a resurgence of minor dizziness and head fullness. It's been around for about three weeks so far. I hope the symptoms abate. They have in the past but somehow when they are present, I have this fear that they are here to stay. With the dizziness comes some fatigue, which is present at the end of day, when I find myself wiped out by 9 p.m. and requiring 8 - 9 hours of sleep.
I've been experiencing some tension and soreness in my jaw for several months, which has led to tension headaches. Perhaps there is some connection. I have my two year MRI coming up and I will see a separate doctor about the jaw issues. I thought I was out of the woods, but I guess not. Naturally, the mother of all fears lurks in the background: perhaps I'll need surgery after all. Odds are heavily against that, though.
Overall, I'm doing fine. It's just I had become accustomed to virtually normal. And so the saga continues...
Month 24: Back To Normal Again (Updated: August 28, 2009)(top))
Great news. Symptoms are gone and have been for about a month or so. That last episode turns out to have lasted around two weeks. So how do I feel now? Normal. No dizziness or facial issues or other symptoms. Perfectly normal.
I still haven't had my 2 year MRI. With no symptoms present, I'm a lot less interested, but I think I'll go ahead with it. I want more good news.
The jaw issues have abated considerably but not entirely. Still haven't seen a doctor about them. Will keep you posted.
I have been receiving wonderful emails from readers of this site - people who relate to my experiences and have found my story helpful in their own process. I still remember those first few weeks after diagnosis - the anxiety and stress, the confusion. It is so gratifying to know that my experience might be easing others' journey.
Thanks to all readers and a special thanks to those that have written. It is an honor to share your Acoustic Neuroma journey with you. I will check in again in another couple of months. In the meantime, please don't hesitate to write.
Month 26: Reaching For A New Level of Healing (Updated: October 9, 2009)(top))
I am excited to report that I taking my healing to a new level.
This week I went to see a applied kinesiologist/naturopath/chiropractor/clinical nutritionist (Dr. Charny) about the tension in my jaw. A friend of mine recommended Dr. Charny wholeheartedly and so I thought it would be a good place to start.
I've had two treatments with her thus far, which have provided substantial relief. After a couple of more sessions, she will send me to a dentist to have a night-guard made up for me. Apparently, I have enormous tension in my TMJ that is continually exacerbated by nighttime teeth-clenching.
Dr. Charny feels certain this jaw tension is being triggered (at least in part) by the imbalance created by my body's response to the tumor/radiation. Instinctively, I know she is right.
Dr. Charny has helped many patients who have undergone radiation to detoxify and bring their bodies back into balance and we talked at length about my healing process. Over the course of the next several months, I am going to work with her take my post-radiation healing to a new level through her treatments along with diet modification, exercise, supplements and other actions that she recommends. I have a lot of trust is her expertise and her approach and feel fortunate to have found a gifted healer with whom to embark on this next stage in my Acoustic Neuroma journey.
The reality is that radiation is a terrific trauma to the body. I do acknowledge that and feel it is now time to help my my body to heal at a deeper, cellular level.
Assuming my tumor remains controlled, I feel my Cyberknife treatment was phenomenally successful according to the standard measures: tumor control and hearing and facial nerve preservation. But on a deeper level, I know that my body is not quite the same. I feel that my baseline level of bodily tension is higher than normal - like my body is consuming large amounts of energy recovering from the tumor and radiation. I want to help it along in the healing process as best I can.
At the end of our last session, I spoke to Dr. Charny about the choice I had to make between surgery and radiation. I felt great relief when she said she thought I'd chosen wisely, due to the tremendous sensitivity of the area in which ANs grow and the potential ramifications of surgery. Of course, she may have been saying that to make me feel better about my decision. Next time I see her, I will ask her point blank what treatment she would recommend to a patient asking for treatment advice today.
I am excited to share this next phase of my journey with you, my readers, and will keep you posted each step of the way!
Month 27: More Great News! (Updated: November 18, 2009)(top))
I just spoke with Dr. Chang about my October MRI and received great news: everything looks perfectly normal. My tumor has shrunk a couple of millimeters and there are no red flags. Everything is still on track and I can wait a full year for my next MRI. Awesome!
I asked Dr. Chang about the success rates Stanford is reporting with Cyberknife treatments for Acoustic Neuromas. He said they are still seeing a 98.5% success rate in terms of tumor control and about a 75% hearing preservation rate, with quality of hearing at the time of treatment being the strongest predictor of hearing retention after treatment. He shared the lovely news that because of the relative strength of my hearing at the time of treatment, I had a good shot at continued hearing preservation. More awesome!
Day to day, I'm at maybe 95-98% capacity, with this very subtle, minor balance thing happening. Again, I still feel my body is recovering somehow - but it's really tough to put a finger on what that feels like. Just my sense that my body is still straining to purge and heal itself.
I'm still visiting with Dr. Charny and will report progress on that front in my next update. But for now, I wanted to share this fantastic news. Love and blessings to you.
Month 34: Hardly Thinking About ANs (Updated: June 28, 2010)(top))
Wow, I can't believe how much time has gone by since my last update! There's a happy reason for this long delay: I am feeling super healthy and symptom-free.
I'm maintaining a very active lifestyle with lots of hiking, running, and yoga classes. I'm continually striving to improve my diet.
My hearing is completely unchanged since treatment. Balance disturbances are completely gone. And as has been true from the start, I've had no facial nerve issues at all. Basically, I am symptom-free. In fact, I'd say I'm pretty much at 100% capacity. Wow! I can't believe I just wrote that. Thank you God for your many many blessings!
For all you newly-diagnosed patients out there, who are now in the midst of your research and your consultations, worrying about what tomorrow will look like, take a deep breath right now and know: this too shall pass! I am grateful to be sharing this journey with you.
Month 39: Relapse of Symptoms (Updated: November 17, 2010)(top))
Okay, so this past month I have experienced a resurgence of AN-related symptoms, consisting of some dizziness, head fullness and even some tingling on the right side of my face. This was a fairly full-blown episode, the most intense relapse in a long time. It has been frightening and nerve-wracking.
I contacted Dr. Chang about two weeks into this episode and he suggested it was likely that a viral infection had inflammed my already frayed and tender nerves and that it would take a few weeks to run its course.
A few weeks later, I spoke with Dr. Chang on the phone. What he told me is that it is not uncommon for CK patients to experience these relapses. They can last anywhere from 3 weeks to 8 months, with the average being around two months. The answer for the most part is to simply ride it out until the nerve irritation fades. He also said that he is more commonly referring people to vestibular therapy, which he is noting is strengthening patients' balance.
He recommended I have my 3-year MRI to make sure there is no regrowth and reassured me about the odds of regrowth. Apparently, Stanford's most recent statistics show regrowth in 2% of patients treated with CK - something like 10 out of a little less than 500 patients. I like 98% odds. On the other hand, the odds of even getting an AN are about 1 in 100,000, which makes me one very lucky individual. :)
Talking to Dr. Chang calmed me a great deal. I am looking forward to the symptoms receding once again. They are a drag, but I do get to develop the ever-important qualities of patience, acceptance and compassion.
Update: Symptoms still receding gradually. (Updated: December 3, 2010)
Update II: All the symptoms from this episode receded by mid-December. This episode lasted around 10 weeks total, a bit longer than the average of 2 months which Dr. Chang quoted to me. I'm now back to normal. (Updated: January 2, 2011 - Happy New Year!)
Month 43: Cruising (Updated: March 25, 2011) (top))
Hi there. So it is well-into my fourth year after treatment. Life is very good. I have been symptom-free since last November, when I had a month-long resurgence. Now things are totally normal and have been for months.
I just moved to a new place in Marina del Rey, California, right on the water. I'm running on the beach and swimming and biking regularly. Active and healthy. Hearing is unchanged, no dizziness, no facial symptoms. In short, living normally.
Month 51: New Normal (Updated: January 12, 2012)(top))
It's been nearly a year since my last update and I suppose the reason why is things are stable and normal now. This is not to say the AN isn't a part of my life anymore. But I'm just in a new normal.
So how does the tumor affect my life? It is really, really hard to say with any certainty. It's hard to separate out what is tumor-related versus what is general health related versus what is related to the fact that I'm just getting older (I just turned 39) versus what is related to the fact that more than once in a while, I will eat a burger a fries.
For example, I wonder if the tumor/treatment has affected my stamina at all - or if this is just the effects of age and diet. I find myself petering out pretty early in the evening and I wonder if this has to do with the lingering effects of treatment, such as the minor and subtle balance issues that I have, which causes me to tire more easily.
Every so often, I feel vaguely "symptomatic" - that is, symptoms such as head fullness and balance seem to be enhanced. Even at those times, it can be hard to really discern what is going on. Often, I will hardly even think twice about it. And then once in a while, I will just wonder what life would feel and look like with this tumor in my head. It could be that I am so used to carrying around this burden, and looking through these special lenses, that I can't even see how it is affecting me anymore.
On the outside, my life is quite normal - regular exercise, running, swimming, work, etc. Internally, there is no question this condition has impacted my overall sense of well-being. I have less endurance and perhaps less tolerance for stress than before the treatment. I feel less vital. It is so subjective and hard to say though. Maybe I just need to eat more vegetables. Maybe this is what approaching 40 feels like. I just don't know.
Regarding tumor control, I am way behind on my MRI's and have been due to have one for quite a while. I changed insurance companies and this new one will require a massive co-payment on this absurdly expensive procedure, so I have been putting it off until my legal practice stabilizes further. I will post results when I have them.
I hope this update finds all of you well. Please don't hesitate to contact me if you wish to discuss my experience or this website.
Five Year Anniversary (Updated: August 26, 2012)(top))
It's been five years since my treatment, and here are the results in a nutshell:
No physical symptoms
No balance issues (or maybe the slightest tinge of imbalance, barely noticeable)
No deterioration of hearing since treatment
No facial nerve issues
Life is normal. I'm as active as ever.
I get asked often by readers of the site if I would make the same treatment choice. My answer is given my particular set of circumstances, yes, I would. I wanted a treatment that would leave me as whole as possible, where I would not lose hearing or facial nerve functionality, and that is what I got.
There have been important advances in the five years since my treatment. Last summer, I attended the Acoustic Neuroma Symposium put on by the Acoustic Neuroma Association, and I was struck by a couple of things.
It seemed to me that surgical technique -- at least at the national centers of excellence -- has gotten much better. Neurosurgeons are being more conservative in their approach to the facial nerve, opting to leave some tumor behind rather than risk a facial nerve injury. (The remaining tumor either dies on its own because it is cut off from a blood supply or is radiated.) What I took away is that facial nerve injury is becoming less of a risk. I also observed that radiation continues to gain adherence among (some but not all) neurosurgeons who have long been skeptical of the technology and the associated risks.
Fundamentally, I don't think the treatment landscape has changed a whole lot since my treatment. I did a quick scan on PubMed this morning looking for improved quality of life studies and instead what I see is continued murkiness and lack of clarity in the reporting. It is still hard to navigate the treatment landscape. What I sense is that treatments have improved across the board across both treatment types, with surgical and radiological techniques continually improving outcomes.
We are all fortunate that this condition is readily treatable and to be living in a time where modern medicine can accomplish truly extraordinary things.
I remember a doctor specifically telling me after my diagnosis that no matter what treatment I chose, I would be deaf in my right ear within five years. Well, he was wrong. I have great hearing in both ears. I run, swim, surf, hike, work and love.
Personally, I am grateful today for Dr. Chang and his team at Stanford, for my family and friends for supporting me through it all, and for the many blessings of life.
