Any suggestions if we should travel to House Ear Institute (HEI) for surgery?

[penpencil]

Hi,

My wife was diagnosed with AN on Jan 25, 2011 while she was pregnant at 36 weeks. The tumor was 2.8cm*2.9cm*3.0cm. At that time, our baby was also a lot smaller than average as my wife had only gained around 5 pounds during her pregnancy.

Being in New Jersey, We went to see Dr. Sisti @ Columbia University on Jan 27. He was very helpful and suggested we came back visit him after the baby was born. He also talked to our OB regarding my wife's condition, and the OB then decided to schedule a C-section for us on Feb 2 (37 weeks + 3 days). My wife had general anesthesia during the C-section. As expected, baby was born less than 5 lbs; but fortunately, both mom and baby were doing OK.

After a few day's recovery from C-section, my wife had another MRI, but with contrast this time. The results were almost the same. We brought the CD to Dr. Sisti, and scheduled a surgery with him on the upcoming Mar 16.

Yesterday, we found out this AN forum online, which we thought was VERY VERY helpful. Many people were talking about the HEI in LA, which reads to us is great for treating large tumor which my wife has. For her case, my wife is very concerned about the various post-op symptoms, especially headaches, facial paralysis, and possible tumor re-growth. We were not aware of HEI before, and plan to call the institute tomorrow for consultation/opinion.

We were quite impressed by Dr. Sisti during the 2 office visits. But I would also like to know whether it is better we travel to HEI for surgery to minimize the various post-op symptoms? For those who traveled there for surgery, I am wondering how to deal with the post-op follow-up visits? (Thanks to my parents-in-law, they can help taking care of the baby in the upcoming few months).

The other question is about surgery duration. Dr. Sisti said it would be around 6 ~ 8 hours. Reading the various posts, I see it took 10+ hours or even 20+ hours for my wife's tumor size. Any comments on this?

Many thanks,
Penpencil

[JerseyGirl2]

Hi, Penpencil,

I also live in New Jersey (Monmouth County) and traveled to Los Angeles three years ago for AN surgery at House Ear. I would absolutely do it again in a heartbeat.
This is not to say that there aren't superb AN surgeons in New York -- there are quite a few, as you've no doubt noticed by reading this forum.

Going to House won't necessarily guarantee a minimization of your wife's post-surgery symptoms. But I can assure you that you'll be in wonderful hands out there and the surgeons there -- as is true of any experienced AN surgeon -- will do their best to perform a successful surgery.

I'm assuming that you've investigated the HEI website and are aware that you can send your wife's MRI (a CD version is fine ... and much easier to mail!) and audiology report to HEI for a free phone consultation. I strongly recommend that you do that.

I'd be happy to talk with you about my House experience. Just send me a PM (private message) via this forum and I'll send you my phone number.

Best wishes to both of you.
Catherine (JerseyGirl 2)

[JAndrews]

I was also pregnant when symptoms began. When my baby was 8 weeks old the MRI confirmed a 2.5cm CPA tumor (not a AN, a meningioma, but also benign). Same surgery, with the same possible outcomes. My tumor was considered large. My surgery was about 6 1/2 hours. I am fine. The SSD is hard to get used to and I still struggle with it in social situations. The tinnitus stinks. No headaches, no balance issues. I went to the House in LA after several consults. So YES, I highly, highly, highly recommend Dr. Brackmann and Dr. Schwartz. They got all of my tumor out and my life long side effects are just as they told me. Your wife will need major support thru all of this. I know she is scared. I didn't really feel like myself again for about a year. Fatigue was overwhelming for a long time. I was taking naps sometimes twice a day and sleeping 12 hours a night. But here I am 2 years later and I'm doing great. All the best to her and the whole family. Please be patient with her. This is not only physically trying but also emotionally. Emotionally it took longer to get over the whole brain surgery thing! Please feel free to email me and I will be happy to talk to her or you, or you can call me. adon3340@yahoo.com. I am 40 years old now with a 4 year old and 2 year old. I am also a full time nurse. Please...I will help if I can.

[Tod]

Penpencil,

Hi and welcome to the forum. I considered House and did a consult with them, but in the end I decided to have surgery done locally. I really liked both sets of doctors, and both gave nearly identical estimates for surgery and recovery. I am very glad I stayed home to do this as my surgery ended being abnormally long and I spent two weeks in ICU. Would the experience at HEI been different? Possibly, I have no idea. What I do know is that I received excellent care and continue to receive excellent care and follow-up. I have no regrets in my choice.

There are no guarantees with this process, but I don't recall reading a negative story about HEI.

I hope this is helpful,

Tod

[opp2]

Who does your surgery is a very personal decision. I consulted with House as well as three surgeons here in Ontario before going with a surgeon in Vancouver. I felt totally comfortable with the Vancouver surgeon. Things went very well for me.

I don't know the size of your wife's tumour, but most of these tumours will allow you time to research the surgeons you want to consider doing your surgery. Take your time. The baby is such a tiny girl right now, enjoy her and take your time. Your current surgeon must have told you that you have time.

Good luck!

Nikki

[penpencil]

Thanks all for your replies.

JerseyGirl2, I plan to mail the MRI CD to HEI tomorrow. We don't have a audiology report. My wife has had tinnitus (left side) since Dec last year, which was getting worse. But she hasn't lost much of her hearing yet. Dr. Sisti mentioned that it is unlikely she would have hearing on the left side after the surgery. I still wish she would have some left post-surgery! I will send you a PM and I would be very happy if I can talk with you on your House experience.

JAndrews, this is our first baby. She was born small, but she is growing quick, more than 6 lbs now. My wife has had a tough pregnancy with many symptoms since the beginning. We now realized that some of them could have been related to AN, which we didn't find out until the very end. Going through the AN diagnosis in late pregnancy and a C-section delivery, we are VERY blessed and happy that the baby is doing great now. I think the newborn will definitely bring us good luck for the upcoming surgery!

Tod, the HEI has a stellar reputation. I will call them later this week for consultation. I agree with you that staying local would be more convenient, especially for us with a baby. After all, we can't leave the baby with my in-laws for too long.

Nikki, my wife's tumor size was 2.8cm*2.9cm*3.0cm. Unfortunately, based on the MRI result and my wife's symptoms, Dr. Sisti has suggested us to have surgery done soon, rather than waiting for feeding the baby a little longer. I would also like to get a second opinion from HEI later this week.

I am new to this forum, and I will try to go through the previous posts soon to learn more on this. As I don't know which panel is more appropriate, I had also posted my questions in the 'Pre-Treatment Options' panel. Please ignore the post if you happen to read it there.

Thank you again,

Penpencil

[jaylogs]

Hello there, I am a House Alumni myself, and I traveled from Phoenix AZ to LA for my surgery in Dec '09.  I myself would do it in a heartbeat.  If you do go there, you'd have to stay there for about 8 days or so post op until they can get the stitches out and the intern doc can clear you to travel.  I had a doctor here locally who I saw after I came back about 3 months post for my follow up. After that, I had required no more follow-ups.  So to answer your question, any good reputable doctor that is near you that knows about these things should be sufficient for your follow-ups.  However, since everyone's situation is unique, that should be a question to ask those at House, and see what they say.  They are top notch though, so you'd be in great hands.  If you have any further questions about House, please feel free to ask on here or send me a private message.  There are a lot of us who've been to House that can help! Good luck!
Jay

[wwarr]

Hi Penpencil,

I am sorry you guys are facing this challenge at a time like this! I am glad to hear the baby is doing well. Congratulations on your sweet baby!!

I am too an alumni of HEI as I had my surgery 7 months ago.  I am so happy with my decision in going there and my surgeons, Dr. Schwartz and Dr. Friedman were excellent! I actually cancelled my surgery here in Utah after getting a second opinion from Dr. Friedman @ HEI and chose to go there.  After alot of research, I found that HEI was the best choice for me. 

We stayed @ the Seton Guest Center which is on the campus of St. Vincent Hospital where House operates.  My husband, mother and daughter came with me.  They stayed at Seton while I was in the hospital which is actually connected to the hospital and was very convenient for them.   I had surgery on a Friday, was out of the hospital the following Wednesday night then went back to Utah 4 days later.  I saw my internist in Utah for my 2 week post surgery follow up then went back to HEI for my 3 month check up.

It was well worth the effort and ease of mind.  I would do it again.  Please feel free to send me a message and I would be happy to give you my number and answer any questions you might have.

best wishes!

Wendy

[cindyj]

Hi, another HEI alumni here...there are quite a few of us around here.  I traveled there from GA two years ago.  As others note, however, it's a very personal choice and all about you guys feeling comfortable and confident.  Just wanted to mention that there was a patient on here last summer who traveled to CA to have her AN removed by Dr. Friedman, but had her baby delivered via C-section out there just days prior to her surgery - quite a story.  I can't come up w/ her name right now, though...any of you regulars remember?  A local tv station actually did a piece about it...the link is out here somewhere?  I'm sure someone will come up with it for you...I'll try to look around later also and see if I can find it, if not.

Best to you and your wife!

Cindy

PS - I have no need for any follow up, but would go to a local doc here in Atl if needed...

[moe]

Hi penpencil
Not an HEI alum but wanted to welcome you to the forum!
My tumor was about the same size. I had translab. Lost the hearing. My facial nerve issue is NOT the norm,  (if you see my sig, so don't panic
I'm doing great.
Let us know how things progress and enjoy your newborn.~congratulations too!
 I would imagine you have a couple of months to make concrete plans, unless the AN is growing as we speak......
Maureen

[penpencil]

Thanks all for your replies/messages and support. They were VERY VERY helpful.

I have mailed the MRI CD results to House Clinic today, and it should arrive tomorrow. I will speak to the doctors there this week.

Wish the best to all of you!

Penpencil

[CHD63]

Penpencil .....

I'm a little late to the welcome party, but wanted to add my welcome and say that I have been following this thread.

You have a lot on your plate right now with a new baby and a wife with an AN ...... either one is not for the weak at heart.

It sounds like you are on the right track gathering information and your options.  Soon it will all become clear to you what you should do.

Many thoughts and prayers.

Clarice

[ksiwek]

How could I be late to this...man is this familiar!  I am the patient who had to have her baby early via c-section last year and then have AN surgery 2 weeks later.  I am so sorry for the circumstances...ones that I know all too well.  I am going to send you a PM on the subject.  Please know that you, your wife and baby are in my prayers.  You are in great hands at HEI.  I have never regretted my decision to fly to LA to have my baby and my AN surgery.  I am here for you guys for any moral support I can offer!

[penpencil]

I have spoken to Dr. Friedman @ House Clinic yesterday. He explained to me my wife’s current condition and treatment plan. He said himself and Dr. Schwartz will be surgeons if we plan to have the surgery there. I was also able to ask him a few questions I had. We have decided to have the surgery done at HEI if the surgery can be scheduled in March or April.

A surgery consultant was assigned to us, and we need to go through some insurance issues this week. Hopefully, the surgery can be scheduled soon.

Penpencil

[JerseyGirl2]

Penpencil,

I'm so glad you had a good conversation with Dr. Friedman!! Hope that plans will go smoothly and that you can arrange a good date for your wife's surgery. Please don't hesitate to contact me again if I can be of any help.

Catherine (JerseyGirl 2)