Changed decision from GK or FSR >>> to >>> translabyrinthe

[bob_michigan]

Thanks for the posts of response to my question(s) about GK and FSR in the radiosurgery area of this message board.

When I went to Johns Hopkins for an FSR recommendation and education, they told me that my #1 consideration should be skull base surgery for my relatively large tumor.  So I started getting more educated about the options.  It looks like translabyrinthe surgery would be best, as recommended by Dr. John House ... and I agree with him.  Everything I've learned now, including from this web site and phone calls, has been outstanding about the House Ear Clinic.

DECISION ----- This afternoon I decided to schedule surgery at House Ear Clinic.  I may call them late today or first thing in the morning.

TEAM OF DOCTORS ----- EITHER FINE? ----- ANY COMMENTS? ---- I understand that a person who gets surgery with a team of either  1) Dr. House and Dr. Hitselberger ... or ... 2) Dr. House and Dr. Schwartz .... "can't go wrong" ... that either would be excellent.

Please post comments.

I already have a degree of trust and comfort about either team, but I figured it doesn't hurt to maximize that comfort level by getting some pros and cons feedback posted.  If someone posts privately to me about this, let me know if I can post your input to the message board (without your name) ... or not.

Bob

[arcteryx]

I think HEI is the way to go ASSUMING you either don't have serviceable hearing or don't care about trying to save it (strikes me as odd that people wouldn't want to at least try, if they have good pre-op hearing).  HEI has an outstanding track record with both translab (and middle fossa for small ANs).  In the event you would like any chance of saving your hearing, you're basically left with the retrosigmoid approach in a tumor of that size.  That opens the door to more surgeons, but I myself would only go to a handful of neurosurgeons around the country with retrosig experience who have been successful with full cranial nerve preservation, including hearing.  Good Luck.

This article has some statistics you might be looking for:
http://rapidshare.de/files/16267556/Rutherford_King-2005.pdf.html

[Battyp]

I know there are a lot of people on here who have gone to HEI with excellent results.  There are some equally good doctors elsewhere (just not in Fl right Phyl!)  Bob how big is your tumor?  Do you have brain stem involvement and do you have any serviceable hearing in your an side?  From my experience, (and I'm not a doctor nor in the medical field!) I just had a large tumor and multiple consults who all agreed due to my placement translab was not an option plus I wasn't ready to give up my hearing nerve in case something could be done down the road to fix my loss of hearing.  I had to have retrosig due to tumor placement and size the benefit was being able to preserve my hearing nerve.  I will tell you that prior to surgery I had lost 50% of my hearing and could not hear the dial tone on the phone.  As of two days ago I can no hear a faint dial tone with the volume turned all the way up and minimal noise distraction from the tv.  I still have the tinnitus but even if htey take the nerve it doesn't take the tinnitus away from what I've beent old and have read.

Either way, I wish you the best of luck!
Keep us updated on your progress!

[bob_michigan]

(EXCERPTS) how big is your tumor?  ... have brain stem involvement? any serviceable hearing in your an side?

I added my signature block ... in the first post and below.
How big is tumor? ... large ( the low end of large )
Yes, the tumor is pressing on the brain stem (pons and medulla)
No,  there is no serviceable hearing on the left side.  At this point I want to maximize the chance for good facial success with translab, which I know will eliminate my left hearing.
Tinnitus?  I think that I have heard both ... tinnitus going away and tinnitus staying after translab

Some more about my question at the first post ..... about the phyisicans .... please see my post under
         "Dr. House / Dr. Hitselberger chosen as team --- any comments?"
          ------ in the catgegory of "Information on Physicians" ----- see my post of the morning of April 21

Bob

[Battyp]

Bob I'd like to know how your surgery goes!  I was told translab wasn't an option due to my tumor placement.  We were pretty close in size and location.  I also could not hear a phone dial tone prior to surgery but just this week (8  mos post op) can hear the dial tone and have regained some hearing on my an side.  Had just talked to the ENT to see about having my hearing nerve removed to possibly dimish some of the tinnitus.  I was told it wasn't an option at this point and it wouldn't necessarily help with the tinnitus.  Curious to see how well you do with the noise factor. 

Sounds like you are in good hands with house. 

[sunshine16]

Hi Bob,

I had a 4.5 cm AN-left side.  I was originally scheduled to have the surgery here in Las Vegas.  But on the last minute I decided to try to check out HEI.  And the last minute also, I decided to have the tumor taken out @ HEC in St. Vincent Medical Center. HEC accomodated me really good and my surgery scheduled 4 days after my initial/first visit.  My surgeons were Dr. House & Dr. Hitselberger.  I will definitely recommend them.  A lot of nurses and people that I spoke with,  in St. Vincent told me that they are the best surgeons there when it comes to AN.  Lots of nurses told me they both can perform the surgery w/ their eyes closed....... 

So, best wishes to you. Keep us posted!  Goodluck

[bob_michigan]

Thanks very much for the posts and the included well wishes.  Sunshine16, I am glad to see such strong positive input about the House & Hitselberger team.

I received a telephone call from another patient who was treated by Dr. House & Dr. Hitselberger that was quite positive.  She said that both doctors are wonderful.  She said that Dr. Hitselberger has a great attitude and loves his job.

She said that she does have a dry eye.  It is not horribly painful, but it gets a "little irritated" and requires eye drops.  She lives in the southwest and needs to us drops twice per day during dry weather.  At other times during the year the use of drops is less often (perhaps once per day?).  She used drops more frequently before; her surgery was in late 1999, so about 6 years ago. 

Of course, Sunshine16, your tumor was definitely in the large category, and I noticed that you needed to have a gold piece put into your eyelid.  I hope that your eye is functioning okay and that your facial features (cheek and so on) are okay.

[Battyp]

Bob did you schedule your surgery yet?  I don't recall seeing a date? Keep us posted on how things go! 
Best of luck to you!

[Desilu]

Hi Bob,

All the doctors at HEI are very qualified. I was recommended by a person that had surgery at House to go with Dr. Brackmann and Dr. Hitselberger. Both are very good. I know that you will like Dr. Hitselberger. He is a very down to earth kind of guy. He will answer all of your questions and not make you feel rushed. You are in good hands! There is a book entitled "For the World to Hear" it's a biography of Howard P. House, M.D. which is a very good read for anyone who has hearing problems or an Acoustic Neuroma. Dr. House and Dr. Hitselberger are both in the book. I wish you the best and please keep us posted on your progress.  Ann

[nannettesea]

I have spoken repeatedly with Dr. Hitselberger post-op due to my poor recovery.  He's been wonderful.  Per my doc, he's a "giant" in the field--he developed the fat/muscle harvesting method to prevent CSF leaks.  If I could do it over, he would be the guy.  By the way, at HEI Hitselberger does the tumor removal, not the ear guy.  That's how they do it down there.  Hitselberger has done THOUSANDS of surgeries.  He'd be my guy.  I had trans-lab and sacrificed near-perfect hearing in order to cut all vestibular nerves-- I was constantly dizzy.  Now I'm still dizzy, and not happy about it.  Don't know what is going on.

Good luck to you!

[SteveS]

Bob,

I am curious as to why you did not consider Johns Hopkins for surgery.  Was this institution included in your research?  If yes, can you share your opinion?  Thanks,

Steve

[bob_michigan]

... why you did not consider Johns Hopkins for surgery.  Was this institution included in your research?  If yes, can you share your opinion?

Steve,

As far as both surgery and radiotherapy, Johns Hopkins certainly does have experience.  The tone of the radiosurgery physician team was that I was to go get skull base surgery consultation, implying that I go back to the midwest and get consultation.  In other words, they did not stress very strongly that they could do it, although it was a definite option.  The neurosurgeon mentioned a couple of their physicians briefly and did state that they have experience with surgery, implying that they could do it.

However, my wife and I had been VERY concerned about the potential complications related to skull base surgery.  Therefore, it seemed a natural to consider the best place in the world first.  So I really do not have any opinion PRO or CON about Johns Hopkins Hospital other than a general feeling that it would be a good option to consider.

Bob