Successful AN Surgery at the House Clinic on Feb 18, 2016

[UpstateNY]

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.

[mmoheb]

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.

[UpstateNY]

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.

[polaka12]

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

[mcrue]

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.

[PaulW]

May the Schwartz be with you!

[mcrue]

And also with you!

[gedavis]

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?

[KeepSmiling]

What a great post. I think it is awesome that you are doing so well.

[UpstateNY]

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.

[mcrue]

That's a fantastic recovery with Dr. Schwartz.

[Blw]

- 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.

[mcrue]

- 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).

[UpstateNY]

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.

[UpstateNY]

BamaStory,
I am so glad to hear your hearing is still intact and wish you a continued positive recovery.