House Ear Institute

[DistressedDB]

Thanks to everyone (especially Josh) for all your comments and suggestions, and for making me open my eyes to see a larger picture.  I think HEI is excellent, and for those who don't have another option, they are the best.

In light of all the information I have received, I am now exploring radiosurgery as an option.  I will keep you posted as to the outcome.

[kristin]

hello distressed..i was reading over all these posts and was just wondering how old you are? i was scheduled for gamma knife at Mayo Clinic in MN when i got a call from an ENT who had been forwarded a letter from my initial neurosurgeon appt. the ENT told me that the chances of hearing loss/facial nerve damage was about the same percent w/ the gamma as it was with the surgery, but the long-term effects of GK have yet to be known...and because i'm only 29 that i (hopefully) will live long enough to see what long term effects are. he personally recommended dr. brackmann as did another physician (a neurolaryngologist) a couple days later.

i had no hearing loss on my AN side prior to surgery. i had middle fossa surgery on April 14th of this year. 6 months on saturday!!! holy cow! i just realized that!! i couldn't be happier with my decision. i have NO (that's ZERO) hearing loss and NO (also ZERO) facial paralysis. i have talked with 4 or 5 people since my surgery that have had middle fossa at House and have had the same results.

i'm not sure why Dr. House has suggested translab unless he felt you were so terrified of the facial paralysis that middle fossa was out of the question. i think i was thinking more on the hearing loss aspect until right up to the day of surgery. Dr. Brackmann said right away that middle fossa was the technique for me. if you want, he sent me four or five different articles about middle fossa. email me at krisnsyd@cyberport.net if you'd like me to send them to you.

if i were you i would talk with dr house again and tell him that i would prefer to keep both my hearing and my facial functions and that the translab approach doesn't suit what i want. maybe ask him if he's not sure that he can perform the middle fossa and save both functions if he can recommend dr brackmann or dr freidman instead. although i'm sure dr house is capable. (i'm just a little biased..i loved dr brackmann and think he did a great job!)

anyway...i know this is a tough time. i was so relieved when i made the appt for the surgery and was at peace. i'm sure you'll feel the same way when you make your decision.

kristin

[jamie]

i was scheduled for gamma knife at Mayo Clinic in MN when i got a call from an ENT who had been forwarded a letter from my initial neurosurgeon appt. the ENT told me that the chances of hearing loss/facial nerve damage was about the same percent w/ the gamma as it was with the surgery, but the long-term effects of GK have yet to be known...and because i'm only 29 that i (hopefully) will live long enough to see what long term effects are.

My ENT told me at 28 that I was too young to have to experience brain surgery, and that he felt I was making the right choice with CyberKnife. Funny how inconsistent the medical community can be sometimes, lol. But the "long-term effects" concern seems a bit hollow, in my opinion, as GK radiosurgery has been performed for over 30 years. I wonder what effects they are referring to? Future cancer? By 30 years we would very likely have seen an increase in cancer among radiosurgery patients by now if there was going to be one. The concern of future cancer is based on old XRT (x-ray therapy) statistics in which large volumes of healthy tissue were irradiated, which is not the case with radiosurgery. Without any real data to back up that concern, which should be widely available by now, it's just speculation. I personally find that "concern" to be very disingenuous, and a baseless tool to promote one treatment over another. Funny how a neurosurgeon will shrug off a 1-2% chance of death due to surgery, but will express great concern over a far lesser chance of future malignancy with radiosurgery, the only issue is really figuring out how much less, the legal paperwork you must sign before treatment gives the chances of 1:1,000 to 1:20,000, even though there have been very few cases of cancer in patients who had radiosurgery, and it's never possible to tell for sure if radiosurgery was the cause. Even with the "long-term effects" that are well known with standard radiaton therapy, in which large volumes of healthy tissue are irradiated, the chances of future cancer is only raised by 7% over the regular population.   

As for the hearing/facial nerve preservation rates:

Comparison of Radiosurgical & Microsurgical Treatment for Acoustic Neuromas

Procedure         Cure Control    Death    Hearing Preservation    Facial Nerve Preservation

GK Radiosurgery    94%              0%             Some/Most                 All

Microsurgery         98%             1.5%            Some                        Most
 
There are several factors, which influence the outcome of surgery. The most important is tumor size. Preservation of useful hearing and facial movement following open surgery is greatly limited by tumor dimensions. For example, useful hearing in the most experienced hands is unlikely in tumors over 2 cm in diameter. Other considerations include a 10 % to 20 % rate of minor complications and 2 to 4 % risk of severe complications following open surgery. This can be avoided by radiosurgery. Patients can be returned to work the day following radiosurgery!

http://www.sd-neurosurgeon.com/practice/gamma_knife.html

Those stats are for gamma knife, newer forms of fractionated radiosurgery like CyberKnife are producing even better hearing preservation.

Surgery and radiosurgery are equally viable treatment options, I sincerely hope DistressedDB will explore both options equally, and not be stonewalled into the surgery option without consulting a radiosurgery specialist first. Kristin's tumor was smaller than DistressedDB's, so one couldn't apply her good surgical outcome to DistressedDB's situation.

Here's a quote from Dr. Chang, a top neurosurgeon at Stanford who also practices CyberKnife, from the CyberKnife support website in which he was answering a patients inquiry:

patient:
I have been diagnosed with AN that is 2.1 cm. Is my tumor size too large for Cyberknife surgery? What are possible side effects?

Dr. Chang:
This size is still within the size limits for radiosurgery, which typically go up to 3 cm in diameter. Furthermore, a 3 cm diameter tumor is almost 3 times the volume of a 2 cm acoustic neuroma (on average).

I personally think that tumors in the 2 to 3 cm range are best treated with radiosurgery and not surgery. Surgical risks are lowest for the small tumors, particularly those that are less than 1 cm in size, but these risks increase dramatically for tumors that are your size. The radiosurgical risks are not substantially different for a 1 cm and a 2.1 cm tumor.

As far as the risks of open surgery for a tumor this size, there is a 50 to 75% chance of hearing loss, and around a 25% chance of facial nerve injury. With radiosurgery, the chance of decreased hearing may be on the order of 30 to 40% with less than 5% of patients suffering complete hearing loss as long as they come into treatment with useful hearing. As far as facial nerve injury, the data from radiosurgery shows a 1% or less rate of injury.

So the bottom line is that for a tumor your size, the risks are much lower, in my opinion, with radiosurgery than with open surgery.

http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=404

 



   

[DistressedDB]

Thanks again for all your input...I believe more data is more informed!  As for my age, I turn 48 in January...so I have a good 20 years on many of you.     I can tell you I don't feel my age, though!

I think it's true we will all get many opinions from the medical community and they will vary.  One thing I have learned, is to gather all the information you can, trust what you see, check it by others who have experienced the same situation, and then make the best informed decision you can for you... 

My son was diagnosed with Crohn's disease when he was 10 - he was very ill.  I learned a lot about the medical community and how to trust what I saw and heard.  I ended up "firing" his GI and "hiring" a new GI in the same practice.  It was difficult, and she did not take it well, but it was the Best decision I ever made!  He's doing well at 18, thanks to his new Doc.

So again, thanks to everyone...I'm now exploring Radiosurgery options...my an is small enough and caught early enough that I still have a little time to respond.  Will keep you all posted!

[JHager]

Hey Distressed,

Good on you!  Glad to see you exploring all your options, and even if radiosurgery doesn't end up being the right choice, you know you'll have made the best-informed decision you can.

It's funny (not 'ha ha', but peculiar), I'm the same way about docs as you are, and for the just about the same reason.  My son was developmentally delayed, wasn't walking or talking by 18 months.  We went through every test in the book, but at the same time pushed for physical therapy.  That got him walking, which was great, but we still couldn't track down the cause.  We were almost relieved when he had his first seizure - it gave us a name to his struggles.  After that, we ended up 'firing' his pediatrician (who was one of those docs who was great if your kid was healthy, but terrible if your kid was sick.  USELESS!), and going out of state for a better diagnosis.

That experience has forged how I deal with the medical community - and I have three doctors in my family!  I never settle for a first opinion on large issues.

I'm glad to hear you exploring more options, despite what the surgeons told you.  Good luck, and please keep us posted!

Josh

[russ]

Hi
   Just a note: I have read that conversion ot maligancy for NF-2 irradiated ANs is 6%. I wish I had the link.
   Russ

i was scheduled for gamma knife at Mayo Clinic in MN when i got a call from an ENT who had been forwarded a letter from my initial neurosurgeon appt. the ENT told me that the chances of hearing loss/facial nerve damage was about the same percent w/ the gamma as it was with the surgery, but the long-term effects of GK have yet to be known...and because i'm only 29 that i (hopefully) will live long enough to see what long term effects are.

My ENT told me at 28 that I was too young to have to experience brain surgery, and that he felt I was making the right choice with CyberKnife. Funny how inconsistent the medical community can be sometimes, lol. But the "long-term effects" concern seems a bit hollow, in my opinion, as GK radiosurgery has been performed for over 30 years. I wonder what effects they are referring to? Future cancer? By 30 years we would very likely have seen an increase in cancer among radiosurgery patients by now if there was going to be one. The concern of future cancer is based on old XRT (x-ray therapy) statistics in which large volumes of healthy tissue were irradiated, which is not the case with radiosurgery. Without any real data to back up that concern, which should be widely available by now, it's just speculation. I personally find that "concern" to be very disingenuous, and a baseless tool to promote one treatment over another. Funny how a neurosurgeon will shrug off a 1-2% chance of death due to surgery, but will express great concern over a far lesser chance of future malignancy with radiosurgery, the only issue is really figuring out how much less, the legal paperwork you must sign before treatment gives the chances of 1:1,000 to 1:20,000, even though there have been very few cases of cancer in patients who had radiosurgery, and it's never possible to tell for sure if radiosurgery was the cause. Even with the "long-term effects" that are well known with standard radiaton therapy, in which large volumes of healthy tissue are irradiated, the chances of future cancer is only raised by 7% over the regular population.   

As for the hearing/facial nerve preservation rates:

Comparison of Radiosurgical & Microsurgical Treatment for Acoustic Neuromas

Procedure         Cure Control    Death    Hearing Preservation    Facial Nerve Preservation

GK Radiosurgery    94%              0%             Some/Most                 All

Microsurgery         98%             1.5%            Some                        Most
 
There are several factors, which influence the outcome of surgery. The most important is tumor size. Preservation of useful hearing and facial movement following open surgery is greatly limited by tumor dimensions. For example, useful hearing in the most experienced hands is unlikely in tumors over 2 cm in diameter. Other considerations include a 10 % to 20 % rate of minor complications and 2 to 4 % risk of severe complications following open surgery. This can be avoided by radiosurgery. Patients can be returned to work the day following radiosurgery!

http://www.sd-neurosurgeon.com/practice/gamma_knife.html

Those stats are for gamma knife, newer forms of fractionated radiosurgery like CyberKnife are producing even better hearing preservation.

Surgery and radiosurgery are equally viable treatment options, I sincerely hope DistressedDB will explore both options equally, and not be stonewalled into the surgery option without consulting a radiosurgery specialist first. Kristin's tumor was smaller than DistressedDB's, so one couldn't apply her good surgical outcome to DistressedDB's situation.

Here's a quote from Dr. Chang, a top neurosurgeon at Stanford who also practices CyberKnife, from the CyberKnife support website in which he was answering a patients inquiry:

patient:
I have been diagnosed with AN that is 2.1 cm. Is my tumor size too large for Cyberknife surgery? What are possible side effects?

Dr. Chang:
This size is still within the size limits for radiosurgery, which typically go up to 3 cm in diameter. Furthermore, a 3 cm diameter tumor is almost 3 times the volume of a 2 cm acoustic neuroma (on average).

I personally think that tumors in the 2 to 3 cm range are best treated with radiosurgery and not surgery. Surgical risks are lowest for the small tumors, particularly those that are less than 1 cm in size, but these risks increase dramatically for tumors that are your size. The radiosurgical risks are not substantially different for a 1 cm and a 2.1 cm tumor.

As far as the risks of open surgery for a tumor this size, there is a 50 to 75% chance of hearing loss, and around a 25% chance of facial nerve injury. With radiosurgery, the chance of decreased hearing may be on the order of 30 to 40% with less than 5% of patients suffering complete hearing loss as long as they come into treatment with useful hearing. As far as facial nerve injury, the data from radiosurgery shows a 1% or less rate of injury.

So the bottom line is that for a tumor your size, the risks are much lower, in my opinion, with radiosurgery than with open surgery.

http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=404

 



   

[jamie]

Hi
   Just a note: I have read that conversion ot maligancy for NF-2 irradiated ANs is 6%. I wish I had the link.
   Russ

I can't find any data supporting that, but I'm not an expert on NF-2, I know you are an NF-2 patient and I'm sure you are more knowledgable on that subject. However, the total number of malignant intracranial schwannomas, radiated, post-surgery, or spontaneous, has not been high enough to support what your source states. There have been very few to date. I know with NF-1, they have a much higher chance of developing spontaneous malignant schwannomas (neurofibrosarcomas), but not intracranially. If you can remember where that info came from, I'd be interested to see it though.  

[jamie]

Here's some info I was able to find on total numbers of malignant intracranial schwannomas....

Malignant peripheral nerve sheath tumours (MPNST) are uncommon primary malignant tumours of peripheral nerves. Intracranial examples are rare with only 7 documented cases including the present report1-5 MPNSTs arising in distal extracranial branches of the trigeminal nerve are slightly more common6.7, but differ significantly in their presentation and accessibility to surgical resection which impacts on their prognosis. Of several reported examples of malignant schwannomas in the sinonasal region, the case of Fernandez et al.8 is the only malignant epithelioid schwannoma (MES). We present the case of a 42 year old male who developed a MES in cranial nerves V and VII.

Only 7 cases have been reported in the literature including the present case (Table 1).
The trigeminal nerve was involved in five cases (one of which also involved cranial nerves 3,4 and 6) and the facial and acoustic nerves in two cases each.
http://path.upmc.edu/divisions/neuropath/bpath/cases/case15/dx.html

Granted, this info is from 1997, and I will try and find a more recent number if it's available.

[Kate B]

Here is my own story about my experience with HEI. 

I think the *term* brain surgery can be frightening. It doesn't have to be.
I must admit that when reading the posts in the old format called a guestbook and on the
listserv, people were extremely satisfied with House. I believe that if you
go to an institution like House for surgery, you will get the best possible
outcome.

I had Middle Fossa Surgery for a 1.5 cm right sided AN on November 29, 2001 with Dr.
Brackmann and Dr. Hitselberger.  The staff there is very professional and
used to handling acoustic patients. As a matter of fact, House takes up the
whole sixth floor of St. Vincent's Hospital.

My surgery was 4-41/2 hours. You complete several tests the day before
surgery  including a hearing test, a meeting with the surgeons, bloodwork
etc..

The day of surgery is interesting.  They typically start the operations in
the late morning/early afternoon. You check into the hospital about 9 am and
you go to the sixth floor and wait in a private hospital room until surgery.
When it is time, you are wheeled down a corridor toward surgery. It seems
funny to remember this, but I remember the sunlight streaming in through all
of the windows. Then you are taken  to a room where you meet with the
anesthesiologist.  The doctor confirms the correct side of the AN and marks
your ear.  I remember the anesthesiologist asking me what I was most afraid
of prior to surgery.  I remember answering her and her reassuring me.  Then
I was out and before you know it they are waking you up and asking you to
wrinkle your nose and smile. These are actually informal observations that
they use to determine your facial nerve outcome.

You are kept in ICU 24 hours and then discharged to your own room. All of
the rooms are individual (private) by design. The first 24 hours were the
hardest for me because I was dizzy.  But before you know it, you are
returning to the sixth floor.    My surgery was Thursday, I was in ICU until
Friday night and discharged to Seton Hall on Monday. (Seton Hall is adjacent
to the hospital and is a facility where you recover). It is like a Holiday
Inn and the charge is a nominal $35.00 per night (2001) making the stay affordable.

By the following week,  I went to a restaurant in Hancock Park
and the waiter was in disbelief to learn that I had brain surgery the week
before. I must admit, I was tired afterward and that trip tired me out...I
set goals and stuck to them. I  just worked to get better.  I was 45 when
diagnosed and 46 when I had the surgery. I was *determined* to get back into
my routine ASAP without overdoing my recovery. I followed the doctor's
orders during my 5 week recovery time before my return to work.

The doctors  want you to stay in CA for two weeks.  I ran a low grade fever
for a few days about 5 days afterward.  Dr. Stephen (the internist that you
see out there) was not worried because of the low gradedness of it and no
headache associated with it. Fatigue was the biggest culprit the first few
weeks. I took daily naps. My facial nerve was preserved, my eye closed all
the way and I retained much hearing. (note: I had 100% hearing prior to the
surgery in that ear.  Now I have 50% low frequencies and ~80% high
frequencies and 84% word discrimination.)  Each day I grew stronger.  The
first day in my hospital room, I made a goal to walk around the floor once
per hour. The next day my goal was three times per hour.

We stayed at Seton Hall the
entire two weeks.  Some chose to move into a hotel after surgery.

The most important thing no matter which treatment you choose is to look at
the physicians and their experience.  On the listserv, people generally say
that the doctor should have more than 100 treatments under his/her belt.
Check out their statistics relative to patient outcomes for your specific type of treatment. 

Kindest Regards,
Kate

[Desilu]

Hi Kate,

My story is very similar to yours. With a very good outcome also. Seton Hall has just raised their prices to $50.00 a day, which is still very reasonable for L.A. I was out there in July for my one year checkup. The doctors out there are very experienced at what they do. I would recommend them to anyone with an Acoustic Neuroma.  Ann

[Kate B]

Although there are many great facilities throughout the country, this thread is meant to be a place for those who have had surgery at HEI to post so that when people are looking for others experiences at House, they can find them en masse.

If you have had surgery at House, please post your story here.

Kate

[shamalec]

Hello everyone,

my sister is scheduled to have a retrosigmoid surgery to remove her hemangioblastoma tumor (she does not actually have an AN but they thought that's what it was due to it's location, same as AN's location) by Dr. De la Cruz, Schwartz and Lekovic at HEI/St VIncent's next month. Dr De La Cruz is the Dr. we have been in contact with, and although i've heard great things about him, i couldn't find any posts by people who were operated by him. Can anyone please give us any reference of him as a surgeon? (i'm sure he is great, we are just scared!) Same for Dr. Lekovic, please.

thank you and God bless you all.

sincerely,

shamalec

[JerseyGirl2]

Hi, Shamalec,

I live on the East Coast and had surgery (translab) at House this past January. I found it to be an amazing place. All the personnel at the House Clinic and St. Vincent's Hospital were professional, compassionate, and extremely competent. I felt that I was in excellent hands during my stay out there and I would do it all again in a heartbeat. That being said, there are many fantastic AN surgeons/radiosurgeons in the country and abroad, and the important thing is to have confidence in your decision.

Dr. De La Cruz was not one of my doctors, but I know that he's extremely well-respected; I'm sure I've seen his name mentioned on this forum, so perhaps one of his patients will respond. As you probably know, you can read all of the doctors' Curricula Vitae on the House website. Dr. Schwartz was my neurosurgeon and I thought he was just wonderful; he spent lots of time answering questions prior to surgery (as did all of the doctors). Dr. Lekovic is, I believe, a new staff member. I check out the House website from time to time and noticed his name for the first time not too long ago. His C.V. is impressive -- I believe he came to House from Barrows, which is an excellent place.

Best wishes to your sister (and all your family) as she approaches her treatment date. I can understand that you're all nervous (this is brain surgery, after all!), but I certainly hope that you'll get a sense of calm as the time draws near. Rest assured that she'll be in excellent hands and will receive the best of care.

Catherine (JerseyGirl2)

[mindyandy]

I thought I'd bump this old post up. I would like to hear more recent stories.

Thank you
Mindy

[mcrue]

This thread has been very helpful for me as well. Even though it's more than10-years old, I felt it deserved a bump.