Sharibari:
Hi - and welcome.
As I usually say to 'newbies', I'm sorry you've been diagnosed with an acoustic neuroma tumor but, since you have, I'm glad you found this site and this forum. As others have mentioned, although the words
brain tumor have the ability to frighten us into near-panic, they really shouldn't, at least in our case. As your research will prove, an acoustic neuroma is a
benign tumor that does not invade the brain. It
is treatable with surgery and/or radiation. Neither are enjoyable but both treatments are bearable and usually efficacious. I know. I've undergone both - for the same large AN tumor - which was reduced to less than half it's original size via surgery (the 'retrosigmoid approach') then treated with FSR (Fractionated Stereotactic Radiosurgery). My last MRI, in December, showed some signs of necrosis, (cell death within the remaining tumor) just 2 months after I completed my (26) low-dose, daily radiation treatments in October.
I'm one of those success stories you're looking for.
My tumor was quite large (see my signature, below, for details) but I had never experienced facial paralysis or some of the other complications some AN patients suffer with, even though it had - according to the MRI report - pushed my brain entirely to one side and was pressing on my brain stem. Pre-diagnosis, I had lost all hearing in my left ear (the 'AN side') my balance was shot (I walked like a drunken sailor and couldn't walk down stairs without clutching a handrail for dear life). My appetite was affected (I lost 30 pounds) and, although never 'athletic', even when younger, I was becoming unusually lethargic. When my wife finally dragged me in to be examined by my primary care physician, he listened to my symptoms, then confidently told me that I 'probably' had a 'thyroid condition'. A blood test ruled that out. My thyroid was functioning just fine. My doctor (a nice guy) then sent me for an MRI scan, suspecting 'a sinus problem'. Nope. The acoustic neuroma tumor was clearly visible on the MRI scan and he informed me that radiation 'surgery' ('Gamma Knife'/'Cyber Knife') was not an option due to the size of the tumor. He referred me to a local neurosurgeon.
My first consultation with the local neurosurgeon was disappointing. He seemed somewhat aloof and I suspected that he was almost intimidated by the size of my AN tumor. Having done my research, I inquired as to how many of these tumors he had removed. He dithered around and finally mumbled
"around 60". At that point I felt that, despite his medical degrees and state license, he was inexperienced in this specific surgery and that he was uninterested in my case.
Next! I soon located an out-of-town neurosurgeon on the recommendation of my wife's neurosurgeon, who had done numerous spinal surgeries on her. He didn't perform brain surgery but a member of his practice did - and he
specialized in AN cases. This surgeon, Dr. Ike Goodrich, turned out to be a genteel and very experienced older neurosurgeon who seemed genuinely concerned for my well-being and, best of all, had over 30 years of experience removing acoustic neuroma tumors. When I asked about CSF leaks, he informed me that he used a titanium mesh to seal the skull (not belly fat) and hadn't had a CSF leak in 'years'. I also expressed great concern regarding the surgery resulting in some level of facial paralysis, which was not a symptom I had experienced at this point and certainly had no desire to endure if it were possible to avoid it. Dr, Goodrich assured me that he would employ nerve monitoring during the surgery and would only remove as much of the tumor as was feasible without disturbing any facial nerves, leaving the remaining tumor to be treated by radiation (FSR). Dr. Goodrich especially impressed me when he stated he would accept whatever my insurance paid (I had Blue Cross) toward his fee and not to worry about money, just getting better. I hired him on the spot and he scheduled the surgery for a week later due to the fact the size of my tumor made it's removal imperative.
Now, before
any major surgery is performed, many 'pre-op' tests are required by both the hospital and the surgeon to be sure the patient has no underlying medical conditions that might cause an unforeseen problem during surgery. I had all of those tests, including a CT-scan of my entire body, and it showed a 'mass' (a dark spot) on my liver. Oh-oh. While no one said
'cancer', it was pretty obvious that was what it looked like. My surgeon was notified and he regretfully canceled the AN surgery until the 'mass' could be identified. He basically said that there was no point in my undergoing th AN surgery if I had another, even more serious condition that might kill me within months. Oh, being the gentleman he is, Dr. Goodrich used more delicate language - but I got his point. Now I was getting nervous. I was immediately referred to an oncologist who was pleasant and sympathetic but clearly suspected that I had cancer of the liver. My wife was getting pale and didn't say much. I tried to remain optimistic. It wasn't easy. The oncologist ordered a liver biopsy, scheduled for the very next day. We weren't wasting any time, now. That evening, my PCP called me at home to offer what amounted to sympathy. I gently reminded him that there was no real evidence that the 'mass' was a tumor and that I was not going to start writing my will quite yet. He said he understood (but probably thought I was just 'in denial'). No, I was simply being optimistic as well as prudent and refusing to despair or become depressed over something that had not yet been proven. I had the biopsy the next day - it wasn't that bad. I received a (much anticipated) phone call from the now-elated oncologist that evening, informing me that the biopsy showed that the 'mass' was a hematoma - a blood clot. According to this doctor, not worth being concerned about. No treatment was necessary. Everyone was relieved, of course. My wife and I thanked God and started breathing again (so to speak).
Dr. Goodrich re-scheduled the AN surgery for 10 days later (the earliest he could reserve an operating room) and I prepared for it as best I could. I prayed a lot, bought new PJ's and packed a 'hospital bag'.
Surgery day - June 7th, 2006 - finally came. To make a long story short, the surgery took close to 9 hours and was successful. Dr. Goodrich and his team removed over half the tumor. I came out of it with no facial paralysis or other complications. I had some double vision for a few days but it quickly abated. I was home in 4½ days. It took a weekfor my body to recover from the hospital meds (steroids) and the effects of 9 hours of anesthesia. I spent the next seven days or so either in bed, sleeping, or in my favorite recliner, watching TV and/or dozing. Mostly dozing. Finally, after a week at home, bored and finally feeling more 'like myself', I began getting out (my wife did the driving). My balance steadily improved and I felt better all the time. Two weeks after my surgery, during my first post-op visit with my neurosurgeon, he commented that my recovery level was
'in the top 5%'. I asked if I could begin driving. He said that I could, but to take it slowly at first, which I did. Within a week, I was driving as much as I ever did. Although I'm retired and my only child is grown, I'm fairly active in other pursuits so I resumed my activities and began to return to normal, again. I felt good.
I was scheduled to begin the FSR (Linux) treatments September 11th. I had a 20 minute treatment every weekday for 5 weeks (plus one day) aimed at 'zapping' the remaining AN tumor and destroying it's DNA so it would effectively 'die'. The FSR was painless but tedious. However, I remained resolute and finished the treatments on October 16th of last year. A December MRI indicated the beginnings of necrosis in the remaining tumor so I'm very pleased, as is my wife, son and neurosurgeon. I have a very slight 'dry eye' on rare occasions and a slight numb spot on my tongue and lip, which the radiation oncologist says will eventually disappear, although it could take a long time. I can accept that as my appetite has returned to normal (I'm trying - successfully, so far - to keep excess weight off), my balance is near-normal and I've long since adjusted to the loss of hearing in one ear (the hearing in my functioning ear remains excellent). I'm very grateful that I escaped most of the post-op complications some AN patients suffer. I'm also grateful for an excellent neurosurgeon and my general good heath, aside from the AN, of course.
This forum has other positive stories from AN patients. Although some AN patients with successful, uncomplicated outcomes may abandon this site and the boards, I've resolved to remain an active poster a bit longer in order to encourage and/or advise other AN patients and to present the kind of account I've just written so that newly diagnosed, scared and sometimes confused AN patients can know that this is a
treatable condition and one can survive it relatively intact in many cases. It's not
all gloom-and-doom. Of course, no one can guarantee anyone else's outcome from surgery and/or radiation but many AN patients do just fine. I firmly believe that a positive attitude and a strong support system (family and/or friends or a combination of both) are essential elements to a good recovery. No, attitude can't repair physical problems but it certainly can make recovery a lot more pleasant. I highly recommend trying to be positive and realize that you have a benign tumor that is completely treatable in a variety of ways. Do not allow your AN to define you. I haven't.
I wish you all the best, Shari and I trust this forum can be another support for you in the weeks and months to come.
Jim
