ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: UpstateNY on March 12, 2016, 11:04:31 pm
-
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...
-
What a great post about a great outcome! Could you elaborate on what "transotic" means?
-
Transotic is an extension of the translab approach where additional middle ear components are drilled/removed. In my case, the last MRI showed the tumor extending up to the cochlea, so this approach allowed better access to the tumor and the facial nerve. It was referred to as the transotic approach in one of my surgery reports and as the transcochlear approach in the other surgery report. I had two reports, one from the Neurosurgeon and one from the Neurotologist.
-
Thanks for the information.
-
Great outcome, and I'm sure your full description will help pre-treatment patients!
I agree with you that Dr. Schwartz is a genius, and I also had a great outcome from House! They preserved my hearing with the Middle Fossa approach, and I didn't have a single balance or facial issue!
-
- 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.
Thank you for the very well written and thorough report, and congratulations on your fabulous outcome. I agree Dr. Schwartz at the House Clinic in Los Angeles is a genius in his field.
I too was considered an excellent candidate for radiation until my first 6-month "post-diagnosis" MRI indicated my Acoustic Neuroma had grown 5mm in 5 months (they usually only grow 1mm or 2mm a year).
To make a long story short, apparently because of the aggressive growth (and previous suicidal tinnitus) Dr. Chang said I was no longer an excellent candidate for radiation (I should have gone 6 months earlier lol) for the same reasons you were given regarding aggressive growth. He said aggressive AN's usually require salvation surgery in the long run, and therefor Chang recommended microsurgery.
Dr. Chang and Dr. Friedman (before he even knew about the aggressive growth that would follow 6 months later) were the only doctors whom I consulted with that recommended microsurgery out of all the specialists I consulted with.
Dr. Lundsord and Dr. Sheehan actually told me the complete opposite, claiming that the faster growing tumors were better suited for the Gamma Knife radiation treatment and actually responded more favorably.
What' a lay person to decide with all this contradicting info?
Plus, according to some members on this website, Dr. Chang and many radiation specialists have treated children/teenagers with radiation, so I don't believe "age" is big factor as it once was regarding cancer, etc.
Dr. Schwartz indicated radiation would likely still be my best option considering my preferences, although since my AN was "aggressive" the success rate would likely be less than the advertised 93-95% (probably more around 85-90% which is still good).
I'm glad to hear your tinnitus has changed (for the better?), and thanks again for sharing your success story.
-
AnGuy
Thank you for the kind comments.
michellef08
I'm glad to hear your outcome was very good as well. If I still had hearing at the time of surgery, the Middle Fossa approach would have been my choice. Unfortunately, my tumor was right next to the cochlea so completely took out my hearing in a matter of 6 months from initial diagnosis.
mcrue
I too had conflicting info, especially between the radiosurgery physicians. USC and House both recommended microsurgery (as expected), since my tumor was relatively small and would have minimal risk, but both said GK or CK were reasonable options if that was my preferred method. UPMC and NYU both recommended GK (again as expected), but said microsurgery with a good surgeon should produce similar results. I know many say that Dr. Chang is unbiased, but he basically told me he recommends CK for most patients since it avoids the open surgery risks unless there is a specific reason not to (e.g. large size, fast growth rate, patient preference, etc.). Of all the physicians I consulted with, I believe Drs. Schwartz and Kondziolka were the most straight forward with me and had no issue with how much time it took to answer my many questions. Both microsurgery and radiosurgery physicians commented about how the tumor control rate can be affected by the growth rate if choosing radiosurgery. In the end, none of us can predict what will happen over the long term since we all respond differently to treatment, but both methods have a very high success rate at the Centers of Excellence so our chances are very good no matter which one we choose.
-
Of all the physicians I consulted with, I believe Drs. Schwartz and Kondziolka were the most straight forward with me and had no issue with how much time it took to answer my many questions.
I agree 100%
-
congratulations on a great outcome! my son was at house a few days after you, with Drs. Schwartz, Miller, and Stefan (we loved all three, and frankly, i wish dr. stefan could be our PCP!).
i will echo for others' benefit both the response time/email being the better way to reach seton hall (we actually didn't hear back from them in time, and ended up in a local hotel - BUT, i didn't start trying to reach them until about a week before surgery, so that was our fault; they DID call back the day before surgery, but it was already too late for us to switch gears), as well as the following, which was our experience as well:
"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."
how i longed for a patient navigator! the onus was on me to follow up on authorizations as well as appointments (which a couple of times got moved around without us being notified in advance unless/until i contacted to confirm), which is not something i would have expected. still, at the end of the day, it was a minor inconvenience to have my son treated by such skilled physicians.
how did you go about getting the surgical reports? i'd definitely be interested in that as well.
-
areles,
We also very much liked Dr. Stefan. He was very personable, knowledgeable, and to the point.
I asked Dr. Slattery for the surgical reports at my post-op appt and he had them printed out before I left. You should be able to call Dr. Miller (or her admin) and ask for them to be sent to you, since I don't believe they have a patient portal where you can access them electronically.
I wish your son the best with his recovery.
-
I will also make a separate post but I just wanted to chime in here. I had my AN removed at House on March 9th. I live in central Texas and have four kids. At first, the decision to travel to LA seemed kind of nuts but right now, two weeks out from surgery, I am so happy I took the trouble to go to House. My doctors were Wilkinson, Schwartz and Stefan. They are amazing. The AN was 1.7mm and was extending into the brain stem. Middle fossa was not an option so I did retrosigmoid. Everything is going great. I had barely any sickness or dizziness. I was reading books in the ICU by the next day which was a huge relief.
I was in the ICU for most of my stay at St. Vincent's because Dr. Schwartz decided to put a lumbar drain in during the surgery so that he could drain spinal fluid as a preventative measure to avoid a spinal fluid leak later. He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure. I thought this was a great idea because one of the main things I worried about was having to have a drain put in while awake. From all accounts this is painful. The ICU can be noisy but I thought the nurses were the best. I did not mind the noise knowing that I was being monitored very closely.
As soon as I was released to Seton, my husband and I went on excursions around LA. We mainly used Lyft to get around which was very convenient. We went to the Griffith Observatory, Santa Monica pier, Malibu and the Getty Villa. Walking was no problem except that my head felt like a foreign object (it still does a little). My main issue was sleep. The steroids make it hard to get good sleep. Also, I need to force myself to rest because I do feel pretty close to normal. But, sometimes the end of the day will come with a vengeance.
They did preserve my hearing as well which was definitely not a given with retrosigmoid. It is definitely not great hearing but I won't know how it is until I get a hearing test in a month. Tinnitus is still there but I think it is different than before and also, due to steroids and ongoing healing, the doctors said it may take a month to settle down to the new normal. I definitely think that it is better in that loud, sharp noises do not aggravate it like before.
Hope that helps.
-
Dr. Schwartz decided to put a lumbar drain in during the surgery so that he could drain spinal fluid as a preventative measure to avoid a spinal fluid leak later. He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure.
Congratulations on another success story from Dr. Schwartz. A true genius in his field.
-
>He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure.
this is exactly why my son developed a leak - that porousness. i have to wonder if the experience with him (he was released eight days prior to your surgery) is what resulted in their preventive measures with you (dr schwartz was likewise his surgeon, and all were surprised by the development of the leak a few days later), and if so, i'm glad that's the case! regardless, i'm very happy for you that you had such a positive result!
-
I was in the ICU for most of my stay at St. Vincent's because Dr. Schwartz decided to put a lumbar drain in during the surgery so that he could drain spinal fluid as a preventative measure to avoid a spinal fluid leak later. He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure. I thought this was a great idea because one of the main things I worried about was having to have a drain put in while awake. From all accounts this is painful. The ICU can be noisy but I thought the nurses were the best. I did not mind the noise knowing that I was being monitored very closely.
gahanorama,
Congratulations on your successful outcome. In my opinion, this shows why it is so important to pick surgeons with a high level of AN experience. Whether the actions were due to a surgery performed a week earlier or the hundreds (if not over 1000) that Dr. Schwartz has performed in the past, having this experience allows him to know how to deal with issues that arise on the fly or mitigate potential complications. This was certainly one of my considerations.
-
"this is exactly why my son developed a leak - that porousness. i have to wonder if the experience with him (he was released eight days prior to your surgery) is what resulted in their preventive measures with you (dr schwartz was likewise his surgeon, and all were surprised by the development of the leak a few days later), and if so, i'm glad that's the case! regardless, i'm very happy for you that you had such a positive result!"
I actually thought about this because, of course, I was reading the forum posts in the weeks before the surgery. I am sorry it happened to your son and I hope he is doing well right now.
I am just amazed that I had brain surgery 2+ weeks ago. I almost feel completely back to normal. I would say my head is still a little numb and I am still taking ibuprofen during the day and the hydrocodone at night. More as a preventative measure than because I have pain.
Take care!
-
This forum has been an incredibly valuable resource to me, so I wanted to continue to add information on my surgical outcome for those deciding on a treatment method.
At just over 3 months post surgery, I continue to have no issues what so ever other than SSD, which was present prior to surgery. No headaches, no balance issues, no infections, etc. To test my endurance and balance versus pre-surgery, I had a chance to hike the Echo Canyon Trail at Camelback Mountain 3 weeks ago while in Phoenix on business. This is by no means Mt. Everest, but is full of steep climbs with large boulders, and with 95 degree weather can be a quite challenging hike for a 50 year old. I was happy to find no issues with endurance or balance, and maybe even crossed paths with Arizona Jack in the process. Also spent the past two weekends moving large boulders and 75lb. blocks around my yard for some landscaping projects without any issue.
I can continue to say I am glad to have taken the surgical route, and consider my recovery complete unless the tumor returns. My 6 month follow-up MRI is in 3 months, so will post an update at that time.
I wish all of you in the decision phase or who have had treatment a positive outcome.
-
Thank you so much from all my heart for sharing your experience. My husband is scheduling for his surgery in a month's time at House with Dr. Schwartz. We are coming a long way from Egypt to do the operation. You have provided valuable information and more importantly 'hope'. His tumor is 0.7 mm and we are praying that we come out of the surgery with preserved hearing and facial.
Unlike me, he doesn't want to read anything so I'm doing all the research for him. Can you advise me if we should stay at Seaton Hall or it would be too depressing with so many patients and sick people around you ? Or if we find a close by apartment should be good as well ? Or maybe in case of any medical emergency it's better to be at Seaton Hall for a week after surgery ? We are traveling with our 5 yr old son and my mother so she can support us while we are there.
Thank you again. Congrats on passing this. Wish us luck. I hope soon I come to write our success story also.
-
Dr. Schwartz is a fantastic neurosurgeon, so your husband is in very good hands.
I would definitely recommend Seton Hall. It was very quiet when we were there. One floor is used for guests and only a few other patients/families were there during our stay. It was by no means an environment with many patients and sick people around to depress you. For us, the convenience of Seton Hall was of most value. Los Angeles traffic can get pretty bad and the neighborhood is not the best (it is safe, just many homeless people), so staying there would allow your family to walk back and forth as needed. There is even an underground walkway that connects the two buildings for added security or the unlikely event of rain. Just keep in mind that Seton Hall is very basic, but clean and has everything you need. The rooms have a queen bed, pull out sofa, flat panel tv, and wifi. Some people on this forum stayed elsewhere after surgery to be in a nicer vacation-like environment, but I wanted the convenience of being next to the hospital just in case something happened. It never did, but am still glad we stayed there. We were able to walk to the hospital cafeteria for some meals. Seton Hall had a kitchen with a microwave that you could heat up food purchased at a nearby grocery store. There weren't too many nearby walkable restaurants, but we had a rental car for the days we wanted to eat or go elsewhere. Seton Hall also had washers/dryers and an unlimited supply of washcloths and towels (self serve), which was great for me after surgery. If you decide to stay at Seton Hall, I'd recommend you email them. They respond much faster than if you called and left a voice mail.
Your husband is lucky to have you taking care of all of the research and details. If you have any other questions, feel free to reply or private message me. I wish both of you success and a fast recovery.
-
I will be coming to House on July 18. I have surgery on the 19th. Good luck to your husband and I may meet you before you leave if you are staying at Seton Hall. I emailed them for reservation much easier. Take care. Lori
-
Thank you so much from all my heart for sharing your experience. My husband is scheduling for his surgery in a month's time at House with Dr. Schwartz. We are coming a long way from Egypt to do the operation. You have provided valuable information and more importantly 'hope'. His tumor is 0.7 mm and we are praying that we come out of the surgery with preserved hearing and facial.
Unlike me, he doesn't want to read anything so I'm doing all the research for him. Can you advise me if we should stay at Seaton Hall or it would be too depressing with so many patients and sick people around you ? Or if we find a close by apartment should be good as well ? Or maybe in case of any medical emergency it's better to be at Seaton Hall for a week after surgery ? We are traveling with our 5 yr old son and my mother so she can support us while we are there.
Thank you again. Congrats on passing this. Wish us luck. I hope soon I come to write our success story also.
I think you made an excellent decision. As others have said, your family is in excellent hands with Dr. Schwartz.
-
May the Schwartz be with you!
(https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcSjTF6Ov-oU2KGIPnxk2YvLkk2QuVuDXG-E5KQIFo4rHJosX1XZ_RX8PP-duA)
-
And also with you! :)
-
These post help so much! So after having read all this is there really a difference between which "doctor" you choose at HOUSE seeing as they all work as a team anyway? We were given Dr Brackmann and I assume he will work with Dr. Schwartz?
How long before you were out walking around the piers etc?
-
What a great post. I think it is awesome that you are doing so well.
-
These post help so much! So after having read all this is there really a difference between which "doctor" you choose at HOUSE seeing as they all work as a team anyway? We were given Dr Brackmann and I assume he will work with Dr. Schwartz?
Although all doctors at the House are very good, for me it came down to the experience and my comfort level. I consulted with several of the physicians at the House and ended up choosing Drs. Slattery and Schwartz because they answered my questions/concerns most thoroughly, had the most experience for my particular situation, and I felt the most comfortable with. You may find the same with a different team, but keep in mind that you can (and should) choose which ever physicians you want, not just who they gave you.
Your question about the piers must be for another poster, but I was walking 5-10 miles a day ever since leaving the hospital (3 days after surgery). My balance nerve had already been destroyed prior to surgery, so my post-op balance was no worse than pre-op.
-
That's a fantastic recovery with Dr. Schwartz.
-
- 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.
Thank you for the very well written and thorough report, and congratulations on your fabulous outcome. I agree Dr. Schwartz at the House Clinic in Los Angeles is a genius in his field.
I too was considered an excellent candidate for radiation until my first 6-month "post-diagnosis" MRI indicated my Acoustic Neuroma had grown 5mm in 5 months (they usually only grow 1mm or 2mm a year).
To make a long story short, apparently because of the aggressive growth (and previous suicidal tinnitus) Dr. Chang said I was no longer an excellent candidate for radiation (I should have gone 6 months earlier lol) for the same reasons you were given regarding aggressive growth. He said aggressive AN's usually require salvation surgery in the long run, and therefor Chang recommended microsurgery.
Dr. Chang and Dr. Friedman (before he even knew about the aggressive growth that would follow 6 months later) were the only doctors whom I consulted with that recommended microsurgery out of all the specialists I consulted with.
Dr. Lundsord and Dr. Sheehan actually told me the complete opposite, claiming that the faster growing tumors were better suited for the Gamma Knife radiation treatment and actually responded more favorably.
Interesting, in other biologic systems this makes sense because when you have a rapidly dividing cell, the damage that radiation does to the DNA cannot be detected and reversed by the cellular repair machinery before the DNA is replicated. There are enzymes that scan the DNA for mutations (how radiation does damage), and if the DNA is being replicated too fast, the repair enzymes don't have enough time to proof read and correct--they are loooking for mismatches and gaps. If the DNA is replicated before they are repaired, the mismatch or gap gets incoporated as "normal" DNA sequence. Imagine reading a page in a book and having to look for typos. On the one hand, you have 30 seconds to read the page (a rapidly diving cell), and on the other, you have 5 minutes (a slowly or non dividing cell). You are more likely to miss a typo when you have to read faster. This is also why radiation treatment for cancer causes hair loss, and other problems, because these cells are growing faster than other cells, just as the cancer cells are.
-
- 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
Even Dr. Chang, who is considered one of the world's foremost cyber knife specialist, actually turned me down for treatment after previously claiming i was an excellent candidate when I first submitted my MRI.
Dr. Chang at Stanford actually refused to perform radiation after he received my second MRI during watch-and-wait which showed approx 5mm growth in as many months. Dr. Chang insisted I should have microsurgery instead.
Keep in mind, Dr. Chang could have easily "cashed the check" because I had already told him my insurance already pre-approved him, but he still refused to treat me and insisted people who present with aggressive AN should have microsurgery (even though my AN was only 1.8cm).
It's interesting how Dr. Chang can straight-up turn me down, while at the same time with the same info other world-renowned radiation specialist such as Dr. Lundsford at UPMC and Dr. Jason Sheehan at UVA say the exact opposite....that aggressive growth on my AN was actually better suited and more favorable for radiation treatment.
Dr. Schwartz said I likely wont achieve the 98% success rate with my aggresive tumor; however , he also said the success rate should still be favorable around 85-90%. This is still fantastic in my view, especially if you can avoid microsurgery.
No matter which treatment option I selected, I would still have the anxiety of monitoring the results for the rest of my life (like with Watch and Wait).
-
I had my 6 month post surgery follow-up MRI earlier this week, so am posting the results. The reading physician (where I had the MRI scan done) and Dr. Slattery (from the House Clinic where the AN surgery was performed) both found no indication of regrowth or residual tumor. The recommendation was to have my next MRI in 5 years, but I will probably get one in 1 or 2 years just to be safe.
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...
Thanks again for all of the support on this forum.
-
BamaStory,
I am so glad to hear your hearing is still intact and wish you a continued positive recovery.