Acoustic Neuroma at House


Personal Experiences of the Writer

( photo used by permission)

As the result of publishing my Acoustic Neuroma Physicians list I receive frequent requests regarding my experiences at the House Clinic/Institute in Los Angeles and my decision to go there. Consequently I have developed this page to more uniformly disseminate what information I have. (Confidentially, I am lazy and think this may also allow me to save a bit of typing).

DISCLAIMER Everybody needs a disclaimer. Here is mine. I am not a medically trained person, have no medical background, and am merely expressing personal opinion and the facts as I understand them. Most of this information was acquired in 1995 and is not necessarily true today. Ask questions of the appropriate persons. The doctors and other personnel at House are not aware that I am writing this page.

When I was first diagnosed in Richmond, Va., at the age of 66 I was just as terrified as I expect some of you may be. My doctor (as concerned as I was) had ordered an MRI for another reason and had called me with the results, stating just a bit over-emphatically that "You have a tumor in your head the size of an egg." Fortunately, at 2.5cm, it was more like a robin's egg than that of an ostrich.

Within a couple of days I was scheduled to have surgery in Richmond. Due to poor scheduling by one of the doctors my surgery was postponed for about a week. That gave me time to go to an internet BB where I luckily hit upon a dialog dealing with ANs. I met many fine folks there, some of whom remain friends to this day. The word "House" kept coming up from many sources as did one or two other places such as Nashville Baptist.

I soon was talking to Nashville and House and going over the pros and cons. Being a man of decision I evaluated the extra cost as being only the plane tickets and decided on House. I am not going to boost House too much here. I will try to just stick to my personal experiences.

I flew into LAX with my wife and daughter and, as directed by House, took the shuttle to Seton Hall adjacent to St. Vincent's Hospital (which is where the actual surgeries take place) and across the street from House. Seton Hall, run by the Sisters of Mercy, provides hotel-like accomodations for patients and family on a space-available basis and for a very nominal fee, $35 a day at the time. Alternatively, they offered House-discount rates at nearby LA hotels.

Seton Hall at the time was very efficiently run by Sister Agnes whom we secretly dubbed the Flying Nun as she seemed to be found everywhere. (I am Protestant but that was no factor). The facilities were of such quality that I would recommend them to anyone. They do not furnish maid service but do supply fresh linens and vacuuming as needed. There is a pleasant common room where you can take food (procured elsewhere) and sit at tables much like in a coffee shop. The rooms had refrigerators and I believe there was a microwave, refrigerator, and storage space in the common room.

For meals on the premises you must eat at the hospital cafeteria which is a cut above average. My wife assures me that she had some very good meals there. The cafeteria is a very short walk from Seton Hall. While it is not absolutely necessary to rent a car there it is strongly recommended that you do so. We had good luck with Enterprise (did not need a rental car for our first days there). They will bring a car to you. In spite of what you may hear, driving in LA is not much worse than in any large city. My wife managed quite nicely. There is parking available in the hospital lot.

St. Vincent's bills itself as the oldest hospital in the LA area. Consequently the patient rooms (single) and bathrooms are very small by today's standards; however, they are well-kept and quite adequate. The area around the hospital is best described as barrio in nature with a high population of people of Hispanic background. During the day it is quite o.k. to be out on the streets; however, it is not recommended that you go walking there after night. There are adequate security personnel on the premises and doors are locked at night. You will have your own key if staying at Seton Hall. You will probably want to shop for groceries at a nearby Mexican-style supermarket.

The day after our arrival was a bit hazy to me (soon to get much hazier) as we had appointments for hearing tests, met with administrative people, then met with our two surgeons (I am intentionally leaving out names but will furnish them upon request), and finally met with a general practitioner who was to monitor progress after surgery. The surgeons were explicit as to what would take place and what the major side effects could be. The GP conducted more tests and took a medical history. We had to take a taxi to his office but walked to the hospital and clinic.

On surgery day I was prepped early. That included shaving of the surgical sites (in my case an area behind the ear and on my lower abdomen from whence would come fatty tissue for packing into the small head cavity created). There was no pain involved in any of this, only the usual discomfort and the fear of what lay ahead.

Everyone was kind and solicitous, including all the doctors and nurses. I should perhaps point out what you probably already know - this is LA and the hospital staff and nurses were of a very mixed ethnic nature. There were Eurasians, Asians, South Americans, Blacks, Whites, and others. All of the people that I encountered seemed to be very competent.

For surgery I was first given relaxants, then anesthetized fully. Four hours later I was back in the recovery room, head bandaged like a Civil War soldier, and a large dressing on my lower left abdomen. Pain was minimal although I was pretty disoriented. I here want to emphasize that wherever you decide to go get a firm opinion as to how long the surgery will take. That not only gives you some idea of how long you may be under anesthesia but also how smooth and efficient the operating team is.

I had the usual tubes and other paraphernalia hanging on me but they were soon removed and within a couple of days they had me moving around. After five days I was well enough to leave the hospital and return to my room, still needing a good bit of assistance from my family. I should have mentioned that I was also wearing a plastic eye shield since the eye on the operative side would not close. One advantage of going to House was that you were constantly meeting others wearing the same types of bandages and eye shields. You did not feel so alone in your misery.

Would I go there again if I had it to do over? Knowing what I know now I still think that I would. On the negative side is the fact that you can not just "drop in" on your surgeon to have any little glitches attended to. They told me that once the tumor is out it's out and there is no need for physical follow-up. That has been largely true in my case (three years later) but I will admit that there have been a few times when I would have liked to have them "hold my hand" a little. Even when you have a surgery close to home you are unlikely to ever see the surgeon much thereafter. House will evaluate an MRI at about 3 years which, hopefully, will be all that is needed.

While still at House I (as in the case of all patients) was seen by an opthalmologist who recommended further surgery to help my eye closure, specifically in my case, to have the palpebral (eyelid) spring installed. This is not done in most cases. I have no fond memories of that surgery as you were required to stay awake throughout so they could monitor the surgical progress. There was no pain but a very tedious and traumatic time which lasted as long as the AN surgery. The surgery was a success and did what it was supposed to do. I retained the spring for about a year, then had it replaced with a gold eyelid weight.

Some have asked about the effects of air travel both before and after the surgery. I personally experienced no ill effects either way. As an interesting sidelight I arrived at Washington National just before their usual evening shutdown which is, I believe, at 11PM. I was required by the airline to be in a wheel chair (I could have walked);however there were no ground personnel to help me through the loading ramp and the terminal. They would not let my wife push me so I ended up getting pushed along by the First Officer of the flight. Service with a smile!

If you are a paranoid person (and I tend to be) you may feel like your "hometown" doctors will resent your going off to the "ends of the earth" for your surgery; however, I think a truly professional doctor only wants what is best for you. As shown by my list there are a number of other hospitals and doctors now dealing with ANs (even more than I list as I rely only on patients for my information) but it is unlikely that you will find a competent team in your own hometown. If you do you are one of the lucky ones.

Just remember, if you have been diagnosed with AN, that you have a highly survivable tumor which will leave you with some side effects, all of which are manageable. That would not have been possible around the turn of the century.

P.S. The following is excerpted from an e-mail answer I sent to an inquirer who had some questions about some of the above:

"I'll try to answer your questions as best I can. With something like this I guess we are never really sure as to our decisions; however, all we can do is research as you are doing and then, after a while, just bite the bullet and go with our best judgment.

While I did not say it on my (original) AN web page I still think that House is the premier place for this surgery. They have so much experience to call on that probably no other place is superior.

That said, there are still many other places where she can have this done. Just be sure that you check things like the number of surgeries they do in a year, the number her chosen surgeon has done in the past year, and the anticipated length of the surgery (not totally important as some cases are more difficult than others). The time and expense of the trip to LA should be very secondary; however, it is well to consider who else might be going with you and how much relatives at home will be involved. I had my wife and daughter. It was good for them to have each other there.

The hesitancy I expressed was because I felt (paranoid that I am) that local doctors who are capable of doing ANs (but perhaps not the best) are understandibly a bit miffed if you take your surgery elsewhere. You are almost sure to go elsewhere, though. If you have good rapport with the local doctors they will probably take good care of you when you return. Any professional would. My problems with a couple of local doctors arose when I cancelled scheduled surgery here after first having had it postponed by a surgeon's last minute schedule conflict. That gave me time to learn about House.

No, I never felt any need for expert help after I returned to Richmond........ As regards follow-up all that has been needed in my case was an MRI which I just had at the three-year period and which showed no sign of reccurence. I sent the radiology report to my LA surgeon and that was that.

There is always the chance that there could be a complication that your local doctors would not want to handle. This might conceivably entail a trip back to LA; however, we must be a bit optimistic in this matter and hope and pray that this will not be the case. If you go to House you will be given the best possible care and a return trip (there) is not likely."

Copyright ©: 2008 Arthur B. Wiggins

Created 15 Jan. 1998. Updated 5 July 2008.

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