ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: newmommyLA on September 25, 2009, 12:23:06 pm
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I was just diagnosed Sunday with an 8mm x 5mm AN and have been driving myself crazy with online research ever since. I met with Dr John House yesterday and scheduled surgery for late Oct. I was wondering if anyone used Dr House for Mid Fossa on this site. I know Dr Schwartz has been mentioned a number of times, but I haven't seen a lot of posts on House. I also worry about his age. I just had a baby 2 1/2 months ago and the thought of surgery scares me to death, but I felt convinced that given my age, 34, and the size of my tumor, that the real scary risks are pretty small.
I really like Dr House and I don't want to age discriminate here, but it's hard not to question the steady hands of an older person when they are working inside your head. I've seen a number of posts where people had Dr Brackman, who is also older, and Dr Friedman perform their surgery, but I haven't seen a lot on John House. Any experience or opinions are sincerely appreciated.
Thanks,
Amy
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Hi, Amy,
I'm sorry to learn that you have an AN, but it sounds as though you've done lots of research -- and the fact that you apparently live in the Los Angeles area is a big plus, given your decision to go with surgery!
I live in New Jersey and travelled cross-country in January 2008 for my translab, performed by Dr. John House and Dr. Schwartz. I know that you're having Mid Fossa, so I can't speak to Dr. House's expertise with that procedure, but he and Dr. Schwartz did a wonderful job on my translab! I absolutely adored Dr. House (as well as Drs. Schwartz, Wilkinson, and Stefan -- the internist you'll be meeting during your pre-ops) and had complete faith and trust in all of them. I believe that Dr. House is in his mid-60s -- his hands were quite steady and his mind is as sharp as a tack. He's the son of Howard House, the founder of HEI, who was in his mid-90s when he died a few years ago. I can't say enough good things about him -- and the entire House/St. Vincent's experience; I would do it again in a heartbeat. There are a few others on this forum who also had Dr. House as their surgeon, and I hope they'll chime in with their experiences and impressions as well.
Best wishes to you as your surgery date approaches.
Catherine (JerseyGirl2)
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Hello Amy - I had mine on 7/6 with Dr. Slattery at House, I'm just wondering since you have your hands busy with you newborn, why aren't you willing to wait to see if it continues to grow and how fast it grows? Mine grew 2mm more in four months and that's why I did it at 1.4 after 8 months of my original dianosis and didn't want to wait and get it bigger and cause me more problems. Do your homework and look for your options, maybe you don't need to rush.
Good luck!
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Hi all,
Just want to interject one thing. Commonly known (in medical community as well) that head MRI's have a total margin of error of approx 2mm...... all depends on what MRI machine used, different people doing the reads, "slices" of the views, etc, hence, the total margin of error. Example, if an AN measures 8mm at one MRI read.. and 10 mm at the next, it does not (typically) constitute a "growth spurt" as the 2mm difference falls within the "total margin of error".
Anyway, with that said.... Amy, welcome to the site. Like you, when discovered, mine was small and the info available out there was overwhelming. Dr. House has been around quite some time (I thought his son, also Dr. House, is in practice at HEI and hoping someone can confirm/correct me on that). Great team at HEI (I happened to have email with Dr. Slattery today, as I had the honour of meeting him/have lunch at this summer's ANA conference in Chicago) and I know they have a great team at HEI. I thought Drs Brackman and Friedman do the majority (but I could be wrong on that) and many HEI "alum" on this site, so let's see how everyone responds.
I just wanted to give you "welcome"... and no worries... we are all here to help. Please use the "Search" option on the top left of the home page with info you seek.... in the 4 yrs I've been on this site, I can share this is an overwhelming wealth of info. It can feel overwhelming at times, so take your time. Your AN is not emergent so you do have time to do your homework.
We're here to help. Hang in there.
Phyl
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Dr. House has been around quite some time (I thought his son, also Dr. House, is in practice at HEI and hoping someone can confirm/correct me on that).
Phyl,
As I mentioned in my earlier post, Dr. John House (the one with whom Amy has conferred) is the son of the late Dr. Howard House, the founder of HEI. Dr. John House has been at HEI since, I believe, the mid-1970s and is in his mid-60s. He has several sons, but none of this third generation is at HEI.
Anyone who's interested in the early history of AN treatment should definitely go to youtube.com and watch the interview with Dr. Howard House, conducted and recorded when he was in his 80s. We should all be as sharp now as this charming gentleman was at that age! The interview will also make everyone very thankful that they did not have to contend with acoustic neuromas back in the 1940s, 50s, etc. -- things were pretty grim in those days. Dr. Howard House passed away at St. Vincent's Medical Center a few years ago when he was in his mid-90s. When I had my translab at House in 2008, one of the doctors talked about visiting Dr. House in the hospital shortly before he died and said that he was busy on his cell phone and Blackberry until the very end.
Catherine (JerseyGirl2)
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Hello - I wish I had known that information about MRIs, well, my surgery is done and I hope that little portion they left grows veeeery slowly. I loved the team at House and I believe who ever does your surgery there will be great. Thank you Phyl for sharing.
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Hi, Amy - and welcome.
Although I can't respond to your questions regarding the abilities of Dr. House because he was not my surgeon and I didn't use HEI, I did want to add my greeting and commentary regarding an older doctor performing this very demanding surgery. My neurosurgeon - Dr. Issac Goodrich - was well in his 60's at the time of my surgery. He offered 30 years of AN surgical experience and was extremely conversant with every new technique. He did a fabulous job with my surgery (9 hours). Dr Goodrich had a younger (30ish) neurosurgeon he was mentoring as his assistant and she was also well versed in AN surgery techniques. I can't believe that any competent neurosurgeon would remain active and performing this kind of delicate and demanding surgery were they unable to do so without risking harm to their patient, who has literally placed their life in this doctors hands that day. Although you have a right to pose the question of an older surgeon's physical ability, just on his reputation, I have to doubt that Dr. House is anything but well-equipped - both physically and mentally - to perform your AN removal surgery. However, if his age is a real obstacle for you, you might want to choose another neurosurgeon. Your confidence in your doctor is crucial to your peace of mind as you move toward the AN removal surgery. I hope you can resolve this question to your satisfaction, soon - and I hope the folks on this forum can help you do that.
Jim
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I was treated by Dr. House in June 2009 and am thrilled with the results. He worked w/Dr. Brackmann on me so their combined age was, what, nearing 140? ;D But they were both awesome. Tons of energy and life force -- once you see them in action, your worries will melt away.
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Thanks to all of you for your encouraging words and support. I have spent many, many hours on this site since I was diagnosed last Sunday and I am really moved by the amount of positive energy and heartfelt encouragement I have found here. I was skeptical about getting involved in an online support group for fear of finding angry people who had bad experiences and negative attitudes. But on this forum, I've found that even the people who have suffered the most, really are supportive and want to be there to cheer on the newly diagnosed as they go through the same scary journey. I find much comfort in all the kindness and effort people have shown to help complete strangers cope with this shocking obstacle we must all overcome.
That said, I really trusted Dr John House when he told me he'd recommend the same procedure for his own wife and daughter. He is a truly compassionate man and I am certain he wouldn't perform any procedure if there were any doubts about his abilities. I have been on an emotional roller coaster questioning everything this past week and when I noticed that most of the people on this site had Brackman or Friedman for surgery, I worried that because of House's age he might not do as many procedures anymore. Then I learned that Brackman is older, so my theory went out the window. I do know that Brackman has been performing these procedures the longest and House comes in as a close second. The are both not young by any means, but have more experience than most any other surgeons with AN surgery and are considered among the very best. Dr Schwartz, the neurosurgeon, performs 95% of the surgeries for House Clinic and he is clearly one of the very best in the world. So, I'm convinced I've found the right people for the job and I've booked my surgery for Oct. 28th. Now, I have to try not to drive myself mad with worry about possible side effects as I wait about 5 weeks for the scariest thing I've ever had to do.
I will surely be checking this site and following other people's stories every day. I'm anxiously watching anotherNYnewbie's story unfold and hoping for the best. She seems like a really sweet lady and I'm moved by the great support people on this site have provided her.
Thanks again,
Amy
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Amy .....
I am so glad you found this Forum of caring, supportive people. I lurked for months before getting up the courage to post. I desperately needed a support group since my state is too small to have its own group. The local people I found who had had AN surgery were supportive but not in the same way as this group.
I am glad you have made a treatment decision and have a date for surgery. For many of us that was the hard part. Now you can focus on getting things in order and enjoying doing some fun things to keep your mind off the activities coming the end of October.
As you think of questions or things you are concerned about, be sure to post them.
My thoughts and prayers for the coming weeks.
Clarice
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Amy,
Thoughts and prayers will certainly be with you as your surgery date approaches. Now that you've made your decision I hope you'll be feeling a good measure of comfort, knowing that you've done what you can do and you're now placing things in the hands of experts who definitely know what they're doing. As my local otolaryngologist told me when he was recommending HEI, "they've seen it all, done it all, and won't be surprised by anything when they look in your head." I guess that sums it up pretty well. Dr. House and Dr. Schwartz are my heroes!!!
And I think you're absolutely correct when you describe the support and optimism of the people on this forum. The only other medical support forum I had encountered before this one was a forum for patients with pilonidal cysts (a truly painful cyst that's in the lower back -- not terribly serious but definitely requires a brief surgery for removal) -- most of the posters on that forum were of the "you think you had it bad? Let me tell you what happened to me!" variety. I believe that the horror stories are definitely kept to an absolute minimum on the ANA Forum, and I think that's the best approach for everyone involved.
Take care and best wishes!
Catherine (JerseyGirl2)
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Amy,
There is a guy named Larry, going by MrGarlic on the forum, who also attends the Portland Oregon ANA meetings occasionally. He has had two surgeries, the second for a trigeminal neuroma, which was done at House. As he told the story, he was wondering about all these old guys doing surgery there, and Dr. Brackmann explained that they meet every morning, and take turns holding a laser pointer and pointing it at a spot on the far wall. If anybody is shaky, they quit doing surgery. So far the old guys are still going strong. :)
I have added your surgery date to our AN Calendar, so we can remind you as the day approaches, in case you forget. :) Actually, so we can be sure to wish you well. Meanwhile, relax. You have done your best and made the tough decision, now all you an do is sit back and find out what happens.
Best wishes,
Steve
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Hi, Amy ~
I was very pleased to learn from your last post that you've not only satisfied your reservations regarding Dr. House's abilities as related to his age but have scheduled your surgery at HEI. As everyone here will tell you, that decision is not only terribly important but also one of the hardest parts of this 'adventure'. You've now accomplished that - an achievement in itself - and yes, the waiting can be difficult. While focusing on the 'what-if's' is common for AN pre-op patients it remains essentially useless. The HEI surgeons are superb and while there is always a risk of complications and post-op 'issues' associated with this most delicate and demanding of surgeries, you've stacked the odds in your favor by choosing HEI. I would suggest that you try to focus on your upcoming recovery and getting things back to normal. Should you have a post-op problem, you can deal with it then. Why worry over things that haven't even happened? Your worry, while relatively normal to some extent, won't change anything - but it does add unnecessary stress when you want to be as calm and fit as possible as you mentally prepare for your surgery on October 28th.
Like so many others, my thoughts and prayers will be with you as you prepare and especially on the day of your surgery at House. Thanks for your warm words regarding the folks that populate these forums and make them what they are: useful and supportive. They'll appreciate your comments and I can be confident in stating that we just want to help and support those relatively rare few who have to deal with this benign but troublesome little tumor. I'm sorry you had to receive your AN diagnosis but I'm glad we could help you cope. We'll continue to do so. Now, try to relax a bit. :)
Jim
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Hi Amy! Now that you have made your decision, you can relax. Put the worries in your doctor's hands. This is what they do everyday. What will be...will be. Your concerns are not going to change the outcome so go spend time with your precious little one! Take a lot of deep breaths, exercise, clean, play...whatever makes you happy! My thoughts are with you as you continue in this adventure ;) Alicia
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Hi Amy, I too am new to posting on this site and have surgery scheduled in MI 11-9-09 Middle Fossa approach.
I am just curious how many MRI's you've had done to even be sure the tumor is growing. Also, did you have all the testing done to check things like the Auditory Brainstem Response, or the other multiple tests that can be run to see if the tumor is effecting more than just the hearing level? Besides my tumor growing, my ABR results were decreased and my hearing level went slightly down. That is when we finally decided surgery.
I had actually talked with the head of radiology in my hometown due to the differences in MRI reports. And was given good detailed info. like Phyl mentioned above. I found that very interesting. They also told me to be sure to go to one of the better MRI places that did the smallest cuts possible. Around here, the cuts only went down to 3mm, whereas Detroits went down to 1mm. When talking of smaller tuomors, that makes a huge difference.
GOOD luck....we can go through this together!!
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Hi, Amy! Hadn't "met" you yet, so wanted to stop in...though I didn't have Dr. House, I did have Dr. Schwartz along with Dr. Friedman at House for my surgery which was 11 months ago. As Catherine said, they've seen it all out there, and know just what to do once inside your head. This applies to the care you will receive in the hospital as well, which was very important to me also. Those nurses and physical therapists on the "AN floor" at St. Vincents know what to expect, what to look for, what to do, etc with AN patients. You will be in good hands!
We have folks here that were also new moms at the time of their surgery...hopefully some will come along and chat with you. Wish you the best!
Cindy
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Hi, Amy,
I know we have been pm'ing, but after my last ten incredible days in the hands of HEI, I wanted to chime in that I would not hesitate a moment to use them again, and again and again. In terms of age, Dr. Brackmann was incredible. He has boundless energy. I did, too, wonder at the beginning about the age thing but I had heard that he had an incredible steady hand and he was the one who always made me feel calm and safe. These surgeons have seen EVERYTHING and are operating at high energy levels everyday. I knew there would be no surprises for Dr. Brackmann with me. Now that I have been there and gone through HEI, I do not think any of of them would take on anything they could not handle. They are an incredibely committed group of Drs and Dr. House was doing surgeries right along with the rest of them while I was there. You are in good hands, period. If he makes you feel calm and confident, you are in the right place. I truly believe they would not be operating if they felt like they were not in the right position age-wise to do this. It is a team of surgeons and they are well-suited for each other. Dr. Schwarz is meticulous! You will do great!
Cheryl
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Thank you all for your encouraging words and for offering to help me get through this emotionally challenging time in my life. I have some days when I feel pretty confident about what lies ahead for me as I remind myself that I caught this tumor early, I'm young, and the risks are supposed to be small for me. Other days, I feel like I'm in a bad dream and I imagine how uncomfortable, probably painful at times, my recovery is going to be. I feel sure that House is the right place for me and I'm determined to get rid of this tumor and hopefully, all in one surgery with no complications. Of course, there are a number of things that could go wrong, and I am hoping I will come out of this without any long term damage. The balance issues after surgery sound very daunting and I'm really afraid I might wake up in the hospital and freak out. I meant to ask my doctor about this. If I'm really losing it, will they show me mercy and knock me out again? After hearing many of your stories, the inability to sleep post surgery seems really unfortunate. With the room spinning and all the possible pains post surgery we may suffer, why can't we sleep? Like for two weeks? I'm really upset about that one.
I'm sure I'll continue to contact you guys on this forum as my date approaches and my nerves get the best of me.
Thanks so much for being there! I couldn't do this without you!
Amy
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We'll be going through this together too. Even just searching things and reading on this forum is a great comfort.
I think the reason most people mention not having good sleep all comes down to the steroids that you are on for a short time after the surgery.
If you ever need to talk, I'll PM you my phone number. My kids are not as tiny as yours right now, but 9 & 11, so I'm also have some of the mommy experience and my share of previous issues besides this upcoming surgery.
Best of luck to you! I believe in the power of prayer, I'll keep you and the family in mine!!
Denise