Mid Fossa Surgery other than HEI

[Glenda]

Hi all
I would like to know if anyone has had mid fossa surgery with good results anywhere other then House Ear Institute.  I am weighing my options at this point and am leaning toward surgery.  I have seen one doctor and he recommended mid fossa due to having the chance of keeping the hearing I have in the AN ear.  I am currently waiting to hear from a doctor at HEI as I sent my MRI to them.  I sent the MRI priority mail and it arrived there day before yesterday, so I'm thinking I should be hearing from them sometime today.  After reading posts on this forum it appears to me the best results for this type of surgery have come from House.  I am on the East Coast and it would be quite expensive for me to have the surgery in LA, therefore I am trying to find a competent doctor closer to home.  This will affect the rest of my life so I am trying to make the best possible decision.  Thanks for all your imput!
Glenda

[ppearl214]

glenda! you good witch  ... how are you doing? I hope you are doing well.

Well, I know an extreme amt of folks up here in New England that will attest to Mass General Hospital/Mass Eye and Ear.... Dr. Barker (whom, btw, just help present at  last year's ANA Symposium in Philly), McKenna and Martuza (I forget exactly what kind of dr Martuza is, but I'm sure someone here can help.).  Many here that will attest to the surgical wonders at MGH (ok, where is crazykat, jcinma, kbonner and all).

I believe mostly other forms of AN surgery (may not necessarily be MidFossa) but they are better qualified to answer than me.....

If you come to Boston to check all this out, please let us know.....

Best wishes to you!
Munchkin Phyl

[Static]

Hi Glenda,
I live near the East Coast also and had my surgery at Jefferson in Philly.  I did not have mid fossa, mine was suboccipital but I came out of it in decent shape.  I had thought of going to House but with the kids and dog and mostly finances it was not an option.  The docs at Jefferson were very good and I have also heard good things about doctors at the University of Pennsylvania.  If you are near this area, just give me a holler!
~Karen

[leapyrtwins]

Glenda -

my doc does mid fossa, but he's located in the Chicago area.  It's not as far as HEI, but it's not close either.

I've heard good things about Mass General which would definitely be closer for you.

Jan

[Glenda]

Thank you all for your input!  I will definitely check out all of docs mentioned.  I still haven't heard anything from HEI.  I really want to get their opinion even if I am not able to go there.  Do you know if any of these hospitals offer discount places to stay for family?  My husband said he could always stay at a Ronald McDonald House

Phyl, my munchkin pal I am doing ok other than all the AN sypmtoms, fullness, tinnitus, dizziness etc etc - I have really been concerned about you.  I have read alot of the posts recently and I now realize you have very serious health problems other than the AN.  How are you doing!  You are so amazing to be going through so much and still able to keep such a wonderful sense of humor and be such a help to all of us here.  I also see you are very much involved on the cyberknife forum too.  What can I say.....You are one of my idols 

Karen, Thanks for the info about Jefferson.  My kids are grown but we do have 2 dogs and it looks like family may have to watch them for us.  I understand why you would want to stay close to home.  It will really be hard to leave them... after the children leave you get really attached to pets....  Do you know of anyone who has had mid fossa surgery in Philly?  I am particularly interested in that type of surgery.  I am so glad you have had good results!

Jan, It's always good to hear from you!  I am impressed with your results!  As you mentioned, Chicago still isn't close.  There is just so much to consider...... Thank you as always for your thoughts 

You guys are GREAT!
Glenda

[leapyrtwins]

Glenda -

AN decisions, as well as AN diagnoses, are definitely overwhelming.  Take your time, do your research, and decide what and who is right for you.

It's not always easy, but hang in there 

Jan

[Static]

Glenda,
I don't know what kind of procedure they use at University of Penn but I know that anyone I've talked to who had surgery at Jefferson had suboccipital.  Wish I could be of more help. 
~Karen

[OTO]

Glenda

Many hospitals have attached guest rooms or programs with nearby hotels for discounts.   You can ask when you schedule your surgery. 

If you do go to the House Clinic (also known as House Ear Institute), the majority of their surgeries are done at St. Vincents (across the street from the Clnic).   St. Vincent's has the Seton Guest Center (two floors of studio apartment/hotel rooms).  Each room has two beds (one queen and one sofa/pullout full size bed). 

I know the House website says they will call you back within a day, but it all depends which neuro-otologist gets assigned to review your films.  In my case, the doctor's assistant called me back about 3 days after my MRI films arrived (I sent them FEDEX, so I was able to track when it arrived at the Clinic), and schedule a time for the doctor to call me the next day.  Usually in the afternoon, California time....

Good Luck, OTO

[oHIo]

It took me 3 weeks and two phone calls to hear from House after it was confirmed they received my films.  I was assigned to the "doctor of the day" who just happened to be out of town. 

I patiently waited until week three and called again.  I had pretty much given up that anyone would call me back as the staff seemed rather put out that I called and told me my disk was in the pile.  I did hear from a neurosurgeon during week three.  Four weeks from the date House received my films, I heard from the doctor who had originally been assigned to review my films. 

If you have confirmed your films have arrived and have not heard anything in a week, call them.

[Glenda]

OTO & oHIo - Thanks so much for letting me know how long it took you to hear from House.  I sent the MRI priority mail with signature required so I would have confirmation and they received it Monday afternoon and this is Thursday night.  They definitely have "false advertisement" saying they will contact you within 24 hours of receiving the MRI.     Every time the phone has rang I think it is them.  At least now I won't be on pins and needles waiting for them to call.  If I haven't heard anything by next week I will give them a call.

[Glenda]

OTO

I see that you had your surgery at HEI.  Your AN was the same size as mine.  How did your surgery go and are you doing well now?  Did you have to travel or are you from CA?  This is such a hard decision.  I really want to get as much input as I can.  I really appreciate all the information I'm getting here.  This is a wonderful forum!!

Thank you!
Glenda

[HeadCase2]

Glenda,
   Dr. McElveen (who trained at House & Duke) also performs middle-fossa for AN.  Hes' in the Raleigh Durham area, see http://www.carolinaear.com/mcelveen.shtml  .  I've heard that he partners with Dr. Fukushima if he's going to use retro-sigmoid, and partners with one of the surgeons from House (at the moment I don't remember which one) when using middle-fossa.  I talked to many people who have been successfully treated by Dr. McElveen, at our local ANA chapter meetings.
Regards,
  Rob

[Kaybo]

Glenda~
Hello!  Sounds like you are really on the right track trying to seek out all your options!  Keep gong with that "GUT" (or HS).  Hope everything is going better this week - did your hubby have his appointment?  If I can do some calling or footwork from here, please let me know!
Happy Friday!
K

[Glenda]

Hi K,
I'm trying to go with my "gut" feelings.  So far it's leaning toward House, even though I haven't heard from them yet.
My hubby has an appointment with his neurologist on 3/24.  We are waiting to see what the dr tells him about his condition.
You will get to go to your appt before he goes.  I know you are so excited.  Be sure to update and let us know how the visit goes as soon as you can.  I know I will be checking daily to hear from you!
Happy Friday to you too!
Glenda

[marymomof3]

Hi Glenda - I'm scheduled for Middle Fossa Wednesday, March 19th with Drs. Roland and Golfinos at NYU.  I also believe that Dr. Kalmon Post of Mt Sinai also does Middle Fossa as Dr Post recommended this procedure for me.  I'm nervous about the surgery, but I have put my trust on Dr Roland and Dr Golfinos and now I just have to get through the next 9 days to get to the other side of the op intact.

Mary