My Story, My questions, Please help!!!!

[Sonja]

Thanks so much for all of you who have posted on this forum and shared your experience and AN information.  The support you provide is just amazing. I am so glad I found this site.

My name is Sonja. I have been lurking this site for over a year now. I have learned a lot, read many of your experiences, and felt your stories. I was diagnosed with an AN in January 2007. I actually had my MRI December 18, 2006. My first symptom and the reason I obtained a hearing test was because I had sudden hearing loss in my right ear. I noticed it while on the phone. I thought the person on the other line was speaking on the speaker phone from a distance until I changed ears. This happened in 2005. I put off doing anything about the change in hearing  thinking I had wax build up. I finally tried to treat myself with no results. This is when I made an appointment with an audiologist.  After my hearing test the audiologist suggested I see an ENT. I  had an appointment with an ENT in December 2006. The ENT recommended I get an MRI.  January 2007  my ENT told me I had a brain tumor I can’t really describe how I felt. I just listened and took it in. The ENT referred me to three surgeons and explained the treatment, which I now know to be retrosigmoid or suboccipital surgery. She never explained any other options. Thank goodness for the internet. 

I eventually made an appointment for consultation with DR. Niparko and Dr. Rigomonti both at Johns Hopkins University.  DR. Niparko  recommended surgery and Dr. Rigomonti  recommended watch and wait considering 30% of AN’s do not continue to grow. I took the advise of Dr. Rigomonti and watched and waited. I had my third MRI in October 2008 and the AN has grown. Dr. Rigomonti informed me I needed to treat the tumor and decide on a treatment within the next 90 days. I knew I was in trouble with this tumor, two weeks before my third MTR I started having facial spasms/twitching.

Anyway, I have been doing a lot of research. I have had second consultations with both  DR. Niparko and Dr. Rigomonti at Johns Hopkins. I have also consulted with Dr. Eisenberg (surgery) and Dr.Yok (GK) at the University of Maryland. Additionally, I consulted with a surgeon and CK doctor at Georgetown University, mainly to discuss CK. Last but not least I also forwarded my MRI out to the House Ear Clinic and received consultation.

As many of you have noted on this forum, one of the biggest stress points is deciding how to treat or not to treat the tumor.  It was a daunting and very stressful task. Through many consultations, research, support from family, just a gut feeling, I decided to have surgery.  Still can’t believe I have to have brain surgery. There I said it. My surgery is scheduled February 18, 2009 at House. My doctors are Dr. John House, Dr. Schwartz and Dr. Stefan.  I fly from Baltimore into LA on the 15th. I have reservations at Seton Hall Guest Center until March 1st. I appreciate any prayers you can send my way.

I have a few questions if you don’t mind answering:

1.   Did any of you do anything special before your surgery to help you prepare for surgery?
2.   I am a bit concerned. I did catch a cold and must rid myself of it very soon. I can not have surgery if I can not get rid of this cold. Any cold remedies?
3.   What did you take with you to LA?
4.   For those of you who stayed at Seton Hall, how were the accommodations?
5.   My parents and husband are going out to LA with me, have any one had that many folks in a guest room? If so what did you do for privacy?
6.   Anyone have experience with Dr. House? I hear more experiences about Dr. Brakman.
7.   How long after surgery were the stitches removed?  Where they removed by the doctors at HEI?
8.   What did you do for after care once home from HEI?
9.   Appreciate any thing else you would like to share.

Thanks so much,
Sonja

[Pooter]

Sonja,

I didn't have my surgery at House, so I can't specifically help you there.   I'm glad you started to join in on the forum, however.  I'll answer what I can about things that are not HEI specific:

1)  I didn't do anything special.  I've read that others have done balance exercises prior to surgery which seems to have helped them with the transition.
2)  Others have caught a cold before surgery that I've read.  I don't have any specific remedies, but I can tell you that so long as it's a general cold, then that won't prevent surgery.  If it gets more serious than that, then surgery perhaps will be postponed.  I've seen others say that perhaps a nasal irrigation (netty pot?) would help alleviate things.
6)  I don't have direct experience with him, but I've read wonderful things about him.  You're definitely in good hands.
7)  About 1-2 weeks were when mine were removed.  I don't know what the protocol is for House if you're coming in for surgery.  If memory serves, you'll stay near where you had surgery for up to two weeks, and it's likely that they'll remove the stitches before you leave.  I could be wrong on that.

Good luck on your surgery.  Keep us updated on your progress..  Others should respond to House-specific questions for you shortly.

Regards,
Brian

[Jim Scott]

Hi, Sonja:

Thanks for abandoning your 'lurker' position and posting your information.  I'm so pleased to learn you've found the forums informative and helpful, which is their primary purpose, along with supporting AN patients, before and after treatment. 

I didn't have my surgery at the House Ear Clinic so I can't offer any practical suggestions relating to your questions but I admire your research and the numerous consultations that led you to your final treatment decision.  The only possible recommendation I can offer is to consider taking Zicam® to rid yourself of the cold.  Your first few days post-op will likely be a blur but you should be discharged within a week, unless complications arise, which we'll assume won't happen. 

I think you're in very good, experienced hands with Doctors House, Schwartz and Stefan. at the HEI in Los Angeles.  I'm certain folks who've had their surgery there will soon be adding to this thread with practical information for you, based on their experience with HEI.  Meanwhile, you'll be in the thoughts and prayers of many people on February 18th. 

I've added your surgery date to the AN Treatment Calendar.  http://my.calendars.net/an_treatments/d18/02/2009?authenticate=&display=M&style=B  Feel free to add to it, if you wish.   

Jim

[JerseyGirl2]

Hi, Sonja,

I'm sorry you've been diagnosed with an AN, but it sounds as though you've done an exemplary job of research and you're well on your way toward resolving the issue!

I live in New Jersey and had translab surgery in January 2008 with exactly the same surgical team (Drs. House, Schwartz, and Stefan) you've lined up. I can't say enough wonderful things about them and about the entire medical staff at St. Vincent's. My local otolaryngologist recommended them as soon as he presented me with my diagnosis, and I'll always be grateful to him for that.  My subsequent research convinced me to go with his recommendation, and I must admit that I looked no further than House Ear Institute. That being said, I certainly want to acknowledge that there are many, many excellent surgeons in the "AN Universe" whose patients are equally passionate about the care which they received. It's absolutely critical that each AN patient feel confident and secure about the surgeon and treatment type they've selected.

Dr. House is the son of the founder of House Ear Institute and I found him to be an extremely compassionate, thoughtful individual in addition to having great surgical skills. His bedside manner, as is true of the other doctors, is reassuring and professional. As my local doctor told me, HEI has seen it all, done it all, and will not be surprised by anything when they open up your head! (And I'm sure that this is also very true of lots of other experienced AN surgeons as well.) Even though these guys have performed a lot of AN surgeries, you'll not feel as though you're simply a number or a participant in an assembly line. The personal, one-on-one interaction and concern is truly amazing and comforting. (And I'm sure this is true of many other AN treatment centers.) Bottom line: you're going to a very, very good place for your surgery, and I don't think you'll have any regrets.

You also posed a couple of questions about Seton Hall. It's not luxurious by any means, but certainly adequate. Each room has a queen-sized bed and a sofa bed.  My husband accompanied me and our college-age daughter was there with us for a few days (during my stay in the hospital); I'm not sure that I would recommend it for four adults -- you could check with your surgical consultant to see if your parents would be "eligible" to book their own guest room (and you might mention your cold to your consultant as well, in case she/he can give you some suggestions). There's a laundry room and a commons room with a kitchen on each floor, and it's connected via underground tunnel with the hospital and just across the street from House Institute (a comforting feeling after you've been discharged from the hospital back to Seton). Seton was originally a dorm for student nurses back in the day when St. Vincent's had a nursing school ... which explains the dorm-like atmosphere of the place. We were quite happy to stay there during our two weeks (we spent the last night at one of the hotels near LAX since we had a very early morning flight back to the East Coast). While at Seton you're welcome to use the hospital cafeteria -- we thought the food was okay (actually not so bad by institutional standards), but judging from a lot of the comments I've read on this forum I think we may have been in the minority, as many folks have complained about the St. Vincent's food. At any rate, the convenience, location and good rates (as I recall it was about $55 or so per day) make Seton worthwhile. We rented a car (parking rates at the hospital lot are cheap -- about $14 per week, with unlimited exits/entrances), and were awfully glad to have it ... although I know of quite a few House patients who didn't rent a car and did just fine.

There's a thread on this forum regarding good things to pack for the hospital. I guess I'm pretty low-maintenance as I just brought books, toilet articles, socks, robe, and slippers. My only pre-surgical symptom was hearing loss, so I felt absolutely fine prior to surgery and we took advantage of the several days before my operation to do lots of sightseeing in the area -- a great way to keep your mind off the upcoming surgery, by the way. My only post-surgical issue was fatigue (I felt fine during my entire hospital stay -- no nausea, dizziness, double vision, headaches -- and the only problem I had in the ICU was that ice chips, jello, and pudding were the only food they would provide!). I enjoyed reading, watching TV, and walking around the hall during my stay (all the rooms are singles, which was nice) and the time passed quite quickly. We continued our sightseeing (though less strenously) after my release from the hospital back to Seton, including attending a taping of the quiz show, Jeopardy, which, if you're a fan, is a lot of fun!

I saw all the doctors again eight days after my surgery (goes without saying that they visit every day while you're in the hospital!) and flew home two days later. I think all my stitches were dissolvable, but that may not always be the case. I had my BAHA implant at the same time as my surgery, so they checked that out one last time as well. My only departing instructions were to give them a call in one month to let them know how I was doing and to have an MRI at the one-year post surgery date. (Naturally I would have called them if I had experienced any problems or had any questions). I went to see my local otolaryngologist in April, following my January surgery. He looked at my incision and BAHA implant, told me they'd done a great job ... and I haven't seen him since. I don't know whether this is typical or not since a  lot of folks on the forum talk about numerous post-surgical check-ups, etc. I certainly don't want to sound cavalier about all this -- it is brain surgery, after all -- but I hope this gives a bit of a balance to some of the posts that reveal numerous post-surgical challenges. I trust you'll agree that everyone faces these challenges very pro-actively and with lots of courage, and I hope you'll feel positive about that as well.

Best wishes as your surgery date approaches, and please send me a PM if I can help you with anything!

Catherine (JerseyGirl2)

[MAlegant]

Hi Sonja,
Sorry to hear this, but you'll be in good hands I think.  The only thing I did to prepare myself for surgery was get as healthy as possible. I ran a lot, biked, ate well, and tried to sleep.  Being in good physical shape made me feel confident that I had done my part.  The rest is out of your control. I'm sure your cold will go away by then.  Keep asking questions; those that have been treated at House will answer and the rest of us will help as best we can.
Good luck,
Marci

[Sonja]

Jim and Pooter:

Thanks soooo much for responding to my post and soooo fast. I really appreciate your post. You and this forum really make one feel not alone. Thanks for also posting my surgery on the calendar. I will ensure I keep you posted and add my experience in the hope that it helps someone. 

I did get Zicam today. I am also taking 200 milligrams of powdered Vit C three times a day. Found out this also helps tremendously with appetite. I have not had an appetite  since I started the 3 doses of vit C yesterday. The cold seems as if it is subsiding.

JerseyGirl2:

Thanks ever so much for sharing your experience with the HEI surgial team, St. Vincent Hospital and Seton Hall. You had a truely amazing recovering, sight seeing while in LA. I am impressed. I am so happy to hear you had no complicatins. 

I did ask Seaton Hall about reserving another room. Their policy is one room per family. Which I understand.  I did not look into renting a car. Maybe I should in the event my family or my family and I want to go off campus.

I will print out and read your story for encouragement. It is truely appreciated. Oh, I was born in Trenton, NJ, went to elementary school at Villa Victoria Academy and high school at Lawrenceville  High (right outside of Trenton). So technically I am a once Ja ersey Girl:).

Marci:
Thanks for sharing. I am working furiously on this cold and confident that it will be history in a couple more days. I am just nervious.



Sonja

[Pooter]

Sonja,

You are welcome to post in this forum any time.  People have questions, problems/issues, and just generally cut up sometimes (but, they usually get sent to Forum-jail if that happens, right Jan and Lori?)..

As if on queue, everyone jumped in with wonderful cold remedies and HEI experiences..  One thing you'll find about this forum is that none of us are alone in this journey unless we choose to be.

Kindest regards and I hope the HEI surgical trip is a good one..

Brian

[cindyj]

Hi Sonja,

I'll extend a welcome also - glad you posted!  And congratulations on making your treatment decision and your surgery date.

I am 3 mos post-op.  Had a translab at House in Nov - Dr. Friedman.  I have nothing but the highest praise for the entire surgical team and care I received while in St. Vincents.  I am doing very well - back to doing everything I was doing before surgery, including playing tennis, etc.  You are in good hands out there.  Catherine gave you a very thorough rundown of her experience out there, so I'll only add that we had a car for the first few days while out there.  We found it quite confusing getting around out there, but it was very nice for our day of site seeing we were able to do prior to the surgery.  My husband stayed at Seton the whole time I was in the hospital and found it quite comfortable.  It is not real modern, but it is only $55 p/night. 

Best of luck to you and do keep us posted,

Cindy

[Kaybo]

Sonja~
I can't really offer you anything but I big-o Texas WELCOME!!  I was in Baltimore last year for a little reconstructive work at JH and LOVED it!!  One of my daughters and I went back this summer for a check-up - we have a good friend now that lives there & works for RUF as a campus minister there.  Anyway, just a note to let you know that I WILL be praying for you.  It doesn't seem like it now, but it will all be OK!  I had surgery 13 years ago (I was 25) and I have a great life now.  You can check out my blog (address below) or contact me by PM (on left) if you need to chat! 

K

[jerseygirl]

Hi, Sonja,

I would like wish you all the best and add that I have seen Catherine (Jerseygirl2) at lunch in NYC and she looks perfect! Not in a million years one would think that she had brain surgery. That should give you hope for the same spectacular outcome she had! Hope you have speedy recovery!

         Eve

[sgerrard]

Hi Sonja,

Glad you came in from the cold.   Best wishes for a great surgery on the 18th.

Steve

[chocolatetruffle]

hello sonja
welcome to the forum!!! i am a House "alumni" and you are in good and professional hands!!!  anyway, will attempt to add additional responses to your questions as i see that catherine had given you the entire scoop.

1.   Did any of you do anything special before your surgery to help you prepare for surgery?
>  i did everything possible to boost my immune system, so 2 mths before surgery, i exercised daily to upped my cardio, stay away from crowds and eat really healthy (fruits, veggies, fish, reduced meat, reduced colas and coffee/teas).  The nurse consult also gave me a prescription for couple of medications/medicated shower wash which i had to take 3 days before surgery.  i also surround myself with friends and family, and did not entertain any fears or doubts.

2.   I am a bit concerned. I did catch a cold and must rid myself of it very soon. I can not have surgery if I can not get rid of this cold. Any cold remedies?
>  hope you feeling better!!!! 

3.   What did you take with you to LA?
>  i live in CA, so i drove down, it was like a road trip as i took snacks, water, juices, water container (for my hospital stay), books to read, my own medical directive, a hair tie to tie up my hair, herbal tea bags, hot chocolate packets, dried fruits, small bag of toilet stuff for hospital stay, slippers/flip flops for hospital stay, .........yeah, everything including the kitchen sink 

4.   For those of you who stayed at Seton Hall, how were the accommodations?
> basic but cannot beat the price and close proximity to the hospital!!!!.  Your family can also access the hospital (after guest hours) via an underground tunnel!  Seton hall houses offices and nun's accommodations, but 2 floors (3rd and 4th floor) are rented out to hospital guests.  The shared kitchen and dining room is located on the 4th floor (i think, seemed so long ago) so ask for the main floor.  There are microwaves and fridge and hot water, and 2 computers for free internet (kinda slow).  You can also bring your own laptop and hook up to internet at ground floor lobby by the office (bring your own cable).  If you get fed up with hospital food, there are take out menus in the kitchen. TV is basic, no remote when i was there.  Heat is not controlled within the room, you have to call facilities to adjust room temps.  Little room service, and it is do your own "changing sheets and towels", which are available on the carts by the dining room. No complimentary toiletries, so bring your own shampoos etc.  laundry facilities is also on the main floor, and it is free and they provide detergent!  There is a mini fridge in the room, so you can do your own picnic and buy food/water from the store and stock up. If you rent a car, the multi story car park building is right next to seton.  i meet a lot of people there, at different stages of AN recovery - it was encouraging to talk to them as they just went through the same thing!!!! And oh, when you get discharged, call for wheelchair service, they will take you right up to your room at seton!!

5.   My parents and husband are going out to LA with me, have any one had that many folks in a guest room? If so what did you do for privacy?
>  the rooms have a big bed (kind size i think) and a sofa which is a pulled out bed.  it will be tight for 4 people

6.   Anyone have experience with Dr. House? I hear more experiences about Dr. Brakman.
> No, i had brackmann, but everyone is a pro at House.

7.   How long after surgery were the stitches removed?  Where they removed by the doctors at HEI?
> Mine was not dissolvable and it was removed a week later during my followup appointment with my HEI doctor.  Immediately after your discharge, you are supposed to call Rita or the nurse consult for this followup appointment.  During the followup, they will take off your stitches at your ear and your tummy (yep, you get a free liposuction!), and clear you for home travel. I also had them clean my operated ear as it was encrusted in some yellow lotion.

8.   What did you do for after care once home from HEI?
> Nurse consult will give you a list of instructions for care - ie, do not hold your sneeze, do not carry more than 5 pounds, and list of vestibular exercises to retrain your brain. Personally, i also follow a strict diet of healing foods to continue my recovery, ie 80% fruits/vegetables, fish, reduced red meat/caffeine.  Plenty of sleep, rest and just take it easy.

9.   Appreciate any thing else you would like to share.
> After surgery, you will be given a list of prescriptions to fill, there is no pharmacy in the hospital so you have to go to the nearest CVS or Vons to fill it. You can't wash your hair for almost 2 weeks, so bring whatever to hold/contain/hide the hair  And bring clothes with big collar openings so you can slide the shirt over your head easily and avoid the wounds.

whew!!!! that is a lot of information, but PM anyone of us from House if you have any other questions, and there are plenty of threads in this forum on House too. Glad to help in anyway and good luck on the surgery!

[leapyrtwins]

People have questions, problems/issues, and just generally cut up sometimes (but, they usually get sent to Forum-jail if that happens, right Jan and Lori?)..

I have never been in Forum-jail, can't speak for Lori, but Phyl has had to crack down on me a few times     That doesn't stop us from having fun, though!

Hi Sonja and welcome.

I didn't have my surgery @ HEI but, as I'm sure you already know, it does have a stellar reputation and you will be in excellent hands.

As Brian (Pooter) said, feel free to ask questions, bring up issues, vent, or just bring us some humor (we LOVE humor).

Good luck on the 18th.  I'll be thinking of, and praying for, you. 

Steve, did you put Sonja's big day on the event calendar?

Jan

[JerseyGirl2]

Hi again, Sonja,

I'm glad all the responses have helped you as you prepare for your surgery!

Eve (Jerseygirl) -- I appreciate your kind words; not so sure that I look perfect by any means, but I am feeling fine. I thought that all of us at the NY/NJ were doing just great and I doubt if anyone else in the restaurant would have guessed what our group had been through or, in a couple of cases, were contemplating going through.

Cindy and Chocolatetruffle gave you some great "House tips" which reminded me of a couple of more things that may be helpful.

When I arranged for our car rental and pick-up at the airport I requested a GPS as well -- I don't think we could have managed without it, and we also had some printed maps as back-up, just in case. If you/your family are comfortable driving in metropolitan DC traffic and the Beltway, you should do okay in L.A. The car also came in handy when it was time to fill the post-hospital stay prescriptions (as Chocolatetruffle mentioned, there's no pharmacy at St. Vincent's); in addition to the two places she mentioned, there's also a Walgreen's on Wilshire Blvd.

Check with your consultant about nearby hotels, some of which give a special "House surgery" room rate. I recall from earlier posts that Cindy and her mom stayed at one of those and liked it.

There's a group of Los Angeles-based House alumni and forum members (David, Lainie, Nancy, and a couple of others) who occasionally get together to greet House patients (who are on this forum) at some point during their stay. This group formed a while after my surgery so I didn't get to meet them, but those who have say that they do an amazing job at providing good cheer and comfort! I'm hoping that one of them will find this thread and get in touch with you.

I feel that I should provide a caveat to accompany the description of my recovery. As you've no doubt learned from your research, consultations and this forum, there are a huge number of variables in the world of acoustic neuromas. The location and size of one's AN are of great significance in determining the treatment type and outcome. The presenting symptoms (my only one was gradual hearing loss) are important, too. Mine was on the small side (about 1.3 cm) and I think it had grown so slowly and steadily over a number of years prior to my diagnosis that any potential balance problems had long since been resolved, equally slowly and steadily, without my ever being aware of them. As a result, my surgery was very "textbook," and if the surgeons ever got together to discuss "interesting cases of the month," mine would not have been in that number (for which I am eternally grateful, by the way).

That being said, I don't think my situation is particularly unique. I think that most patients whose treatment choice is pretty straightforward (I never considered anything except translab, for example) and who don't experience any particular pre- or post-treatment challenges simply don't find their way to this forum (I discovered it only because I was searching for commentary by AN-related BAHA wearers). I certainly hope and will pray that you have an excellent outcome.

One final thought -- given the notoriety of the TV show, you'll always be able to tell all your friends that you went to Los Angeles to be operated on by Dr. House!!

Best wishes, and keep in touch!

Catherine (JerseyGirl 2)

[TP]

I hope this does not come across the wrong way but I would make sure if you have not aleady done so make sure you have a Will and guardionship "stuff" done, if you have any minors. I had been putting it off for so long and my husband and I got that done the week before my surgery. After lots of prayer prior after learning about my tumor I went into surgery feeling very calm knowing I had done everything I could before my surgery. I was totally at peace and knew everything was going to be ok.