I wanted to share my experience at the House Clinic, so others considering microsurgery can be aware that there are successful outcomes (at least so far).
Background:
I was diagnosed with an 8mm AN in April 2015. My symptoms included high frequency hearing loss, fullness of the ear, some imbalance (lightheadedness), and a decrease in word discrimination in my left ear. Since we were not sure if the tumor was growing at this time, we took a wait-and-watch approach. A follow-up MRI in October 2015 showed a growth to 12mm, which is a fairly rapid growth for this type of tumor. My hearing in the AN ear had decreased to almost nothing and the other symptoms remained. My local ENT and other physicians I had consulted with thought it was best to have treatment. I also started to get tinnitus in my AN ear that consisted of various noises ranging from crickets to static that would increase in volume with stress.
Treatment Decision:
The most difficult part for me was deciding on a treatment. Due to my tumor size and age (50), I was a candidate for both radiosurgery and microsurgery, or so I was told. I spoke with the top physicians and treatment facilities in the US. This included USC (Drs. Friedman and Gianotta) and House Clinic (Drs. Schwartz, Slattery and Wilkinson) about microsurgery, UPMC (Dr. Lunsford) and NYU (Dr. Kondziolka) about Gamma Knife, and Stanford (Dr. Chang) about Cyber Knife. Each admitted they were biased to their type of treatment and did somewhat of a selling job, but I had expected that. Even so, all were very respectful of the others and clearly said the decision was my choice.
I had initially scheduled microsurgery at the House for Dec 2015, and then cancelled after second guessing my decision in favor of Gamma Knife. My thinking was "Am I crazy for choosing surgery with all its risks over Gamma Knife?" After further discussions with the various physicians, along with a past patient of the House, I came back to choosing microsurgery at the House. My reasons were the following, although others could argue against microsurgery as well...that is what makes the decision so difficult:
- My tumor had what was considered aggressive growth for an Acoustic Neuroma. Several physicians (although not all) thought Gamma Knife or Cyber Knife would not have the 97-98% control rate for such an aggressive growth and could fail in the long-term.
- Radiosurgery has data out to 15-20 years, but very little data exists past that. As per Dr. Kondziolka, very little data exists past that since most patients that had Gamma Knife more than 20 years ago are dead. This is because radiosurgery was only performed on older patients (65 or older) some 15-20 years ago and these patients have died for other reasons. This doesn't mean radiosurgery will have bad results past 15-20 years, but there just is no good data available.
- Personally, I could live with the tumor in my head, but would prefer to have it removed and avoid the radiation if at all possible. I guess you could say this provides some peace of mind, although there is no guarantee the tumor won't grow back after microsurgery either.
- If radiosurgery failed, the tumor could be much larger and increase the risks of a surgical removal.
- Dr. Schwartz provided statistics that showed for tumors < 2cm using the translab method, he achieved similar results to what the radiosurgery physicians were providing (98% long term success rate, <1% facial weakness, etc.). In my opinion, Dr. Schwartz is indeed a genius as others have stated and was very open with his results and what could be achieved surgically.
Regarding the facility, I chose the House primarily because of Dr. Schwartz. He had no problem with speaking to me for 30 minutes at a time and even provided me with his mobile number to contact him at anytime. I liked both Drs. Slattery (House) and Friedman (USC) for the Neurotologist, but for me it came down to the most qualified Neurosurgeon since that is who would be removing the tumor. I felt Dr. Schwartz had far more recent AN experience than the neurosurgeon at USC. Dr. Schwartz removes over 100 per year.
Surgery:
I live in New York, so my wife and I flew to Los Angeles for the surgery after only phone consultations. We had the pre-surgical appts on Feb 17th where we pretty much reviewed what had been discussed over the phone. This was the first time we met Drs. Slattery and Schwartz, and they certainly made us feel relaxed and that everything would go smoothly. The surgery was Thursday Feb 18th and lasted 6 hours. The first thing I recall was waking up in the ICU at approx 3pm and seeing Drs. Slattery and Schwartz asking me to smile and move my face. I had no facial weakness and both were surprised that I had absolutely no vertigo or nausea. Even though the tumor was relatively small (estimated to be about 1.4-1.5cm at the time of surgery), most of the vestibular function on the AN side was already lost and compensated for. Dr. Schwartz said he completely removed the tumor. They ended up performing a transotic procedure as opposed to translab, since I had a small mastoid and the tumor extended up to the cochlea. This was discussed as a possibility prior to surgery, but on the positive side reduced the possibility of a CSF leak since they sutured the ear canal.
The first night in the ICU was the longest I ever had, since I woke up every 5 minutes due to noises and constant monitoring by the nurses...but for good reason. I was moved to a private room on Friday Feb 19th, where I was able to walk the halls without any issue once the catheter was removed. By late Sunday afternoon Feb 20th, I was released. I really did not have too much pain and was only using some Tylenol the last day in the hospital. This was primarily for the ear and jaw pain caused by the sutures in the auditory canal.
Recovery:
We stayed at Seton Hall which was very convenient. For those trying to book Seton Hall, I found that they respond to email much faster than voicemail. It took them 2 weeks to reply to my voicemail, but the email was answered in a day. We stayed at Seton Hall until the post-op appts were completed. Since Dr. Slattery was at a conference, I was scheduled to see Dr. Luxford on Thursday Feb 25th (7 days post-op) and another with Dr. Slattery on the following Monday Feb 29th (11 days post-op). From the first day I was released from the hospital, I walked 5-10 miles each day with very little fatigue. I continued to have very little pain where I only needed to take Tylenol two nights the entire week. The pain was occasional throbbing from the ear sutures that traveled to my jaw.
After the post-op appts, I was cleared to travel home. At that time, almost all pain subsided, my balance was as good as or better than pre-surgery, and I still had absolutely no facial nerve damage. Quite honestly, if it were not for the incisions and need for my hair to grow back, I could have went back to work (in an office environment) 2 weeks post surgery. The tinnitus I had prior to surgery is gone, but has been replaced with a different form of tinnitus. Now, I hear a low volume squeak in my AN ear when either I speak or have a louder noise coming in my good ear. This is not really a concern for me, since I only hear it if I pay attention to it and is a better trade-off from what I had pre-surgery.
It is now just over 3 weeks post surgery and my recovery continues to go well. I plan to return to work this coming week, but will refrain from traveling for a few more weeks. I travel internationally and wouldn't want to get into a situation where I needed to find urgent medical care in a foreign country I was not familiar with.
Drs. Slattery, Schwartz, and Stefon at the House are absolutely incredible. I can't say enough good things about them. As others have said on this site, Dr. Schwartz is an absolute genius. The nurses and staff at St. Vincent's Hospital took great care of me. The areas for improvement would be on the administrative side and physical therapy. The House could use a Patient Navigator like USC has, since I had to follow-up with them each step of the way. When I did, I had to leave a VM most times and keep following-up until I reached them or got an email address. The Physical Therapist didn't provide good instructions on what to do when I was discharged, but luckily I knew what to do based upon a conversation with a prior patient.
Someone on this website also suggested getting the surgical reports. I did and they were quite interesting, so would definitely agree with that suggestion.
If anyone would like to speak, please feel free to PM me.
UPDATE AUGUST 2016: My 6 month post surgery MRI showed no indication of regrowth or residual tumor. The recommendation was to have my next MRI in 5 years. I continue to do everything I had done prior to surgery. There are also no additional side effects other than what I had just after surgery (i.e. SSD and some form of tinnitus). So far, so good...
