ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Glenda on March 05, 2008, 02:15:36 pm
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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
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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 :)
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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
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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
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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 ;D
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
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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
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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
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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
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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.
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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.
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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
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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
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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
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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
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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
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mary,
sending you oodles of huggles and wellness wishes.... before you know it, you, too, will be a "postie" :)
Glenda, my good witch, thanks for the kind words. You know, regardless of what you do or choose, I'm going to click my heels 3 times for you. The Wizard's hot air balloon is ready to ride you on to wellness :) ..... and no worries, I'm hanging tough.. thank you hun for thinking of me... :-*
Munchkin Phyl
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Mary,
I'm so glad you have made it through the decision process! I too send you lots of hugs and wellness wishes :) I will be looking for you as a "postie"
I'll be praying for you and the drs. It's just human nature to be nervous but try to think good and happy thoughts ;D
Munchkin Phyl,
Thanks for the heel clicks and for making sure the Wizard has the balloon ready ;D
I know you are hanging tough, it would be unlike you to do anything but. :-* You are also in my prayers and I'm here if you ever need me!
Good Witch Glenda
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So, how many of us can the balloon hold ???
I want to go, I want to go!!!
Jan
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Come along Jan!!! It's the magic of Oz. I know the balloon can hold us all!! ;D
We can't do without all our friends!! We definitely ALL want to ride on to wellness!
Glenda
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Glenda
I had my middle fossa on 22 May 07. They were able to save some of my hearing (I don't know the %... I can't find my last audiogram... somewhere in my pile of stuff for my tax return or it fell behind my filing cabinet). Anyway, I feel I'm back to where I want to be. My facial nerve was a little stressed out, but other some slight tension and a crooked smile. I'm okay. I did have to travel to LA for the surgery, but it wasn't too bad. Send me a PM, if you have any detailed questions.... OTO
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Thanks OTO! Another success for House. They are looking better all the time!
OK! I have heard from Dr De la Cruz at HEI! First of all I am VERY impressed with him. Such a caring person! He acutally called me last night and again tonight after I faxed him some additional information this morning. My daughter said "you can't get a doctor here to call you back and he has called you twice all the way from LA", she was impressed also! He did tell me that Dr Lambert who I saw in Charleston was an excellent dr. (made me feel better). Dr Lambert did a year at House. Dr De la Cruz said that even though my AN is small ,it is deep in the canal and he doesn't think hearing can be preserved (not exactly what I wanted to hear). He advised to do what I had already decided, which made me feel good. He advised to wait and do another MRI in 6 months and see if it is growing. He said they may not grow at all for several years and they may grow alot as they are unpredictable. He said I should enjoy the hearing I have as long as I could. I told him I did not want it to grow into the facial nerve and he agreed wholeheartedly. He said that is why he recommended a second MRI in 6 months, if it is growing we will decide what to do at that time, if not much growth then we can look at waiting another 6 months. He recommended I get another MRI at the same location as the first one. My dilemma now is, that MRI was done in Florence, Dr Lambert told me when I got ready to call him and we could do the MRI at MUSC and he would see me the same day with results. I really don't know what to do ??? In my heart I would love to go to House. I emailed Dr Lambert's nurse this morning and she sent me four names of former patients. I have contacted one of them tonight. She had a small tumor but did not know what size but had good results and loves Dr Lambert. The thing that made me question her account is - I ask her if it was ok to talk to her and that I understood she had an acoustic neuroma. She said "I don't know all I know is I had a tumor in my ear" ??? She didn't know the name of what she had nor did she know the size. She said she didn't think about it she just had surgery. She had some balance issues and went through therapy for about 3 months and it doing well now though she did lose hearing. Who knows maybe it is better not to know too much ::) I plan to call the other 3 patients but I'm sure they are all success cases or I would not have been given their names. Now I have to decide if I want to save money and go ahead with Dr Lambert or with Dr De la Cruz and the House team. I must admit the caring that Dr De la Cruz has already shown me is wonderful! Decisions decisions decisions........
Glenda
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Glenda~
I don't know, that other patient you spoke to could just be a dingy, naivve blonde like me!! ;D
K
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K,
Remember I have spoken to you also. She was nothing like you. Her AN was small, you my friend had a monumental AN and didn't have a choice! you had to have surgery......
I just suppose some people are not like me, I have to dot all the i's and cross all the t's no matter what I am doing, which sometimes is not always the best thing :) When it comes to something as important as one's health and you have the opportunity to find out what is going on, I just can't understand not wanting to know ???
Anyway, at first I thought maybe she was just uneducated and didn't know how to investigate but then she told me she was a teacher so that was not the answer. Who knows, maybe she just didn't want to know too much.....
May I also say I think you are one savvy blonde ;D
Glenda
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Glenda -
IMO, you should do what you are most comfortable doing and go with the doctor you have the most confidence in. In other words, go with your "gut".
As for the clueless patient, I can't imagine being one myself, but there are lot of them out there. Some people just feel that ignorance is bliss ;D
Jan
PS - as far as the balloon goes, is Toto coming too?
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Glenda~
You silly girl, I know I talked to you -- I was just being silly too!! ;D
I would have liked to know more, but they just didn't tell all that back then & it was rush, rush. I do feel so uniformed since everybody here seems to know EVERYTHING! I think there are pros & cons to knowing so much.
I want in the balloon too. I actually got to ride in one about a year ago - we had taken the kids to the park & then we saw that they were launching a balloon so I wanted the kids to see. When we got there, the girl that was going to ride couldn't get ahold of her parents for a release so I went. LOVED IT!!!
K
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Glenda~
I want in the balloon too. I actually got to ride in one about a year ago - we had taken the kids to the park & then we saw that they were launching a balloon so I wanted the kids to see. When we got there, the girl that was going to ride couldn't get ahold of her parents for a release so I went. LOVED IT!!!
K
K -
how cool!!! You are braver than I am, I've often thought about it, but haven't booked a flight yet. I'm perfectly fine with planes, but a balloon is a whole different concept :)
Jan
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Hi Glenda-
I'm a new forum member, although I've been "lurking" as a guest for the past 4 months! I also live on the east coast (CT) and had mid-fossa surgery at HEI last August. Rick Friedman and Marc Schwartz were my surgeons. I'm lucky that I have a husband who has tons of frequent flyer miles, so I went to HEI to check it out in advance before I went there for surgery. I too had mid fossa surgery recommended by a local otolaryngologist, but his colleague/department head contradicted him and recommended Gamma knife. I didn't feel very secure with that team, which prompted me to contact HEI.
For lots of reasons, I knew Gamma knife would not be for me. The HEI surgeons spent a lot of time (2 hours) with me and my husband when we went for the preliminary visit, explaining all the pros, cons, etc. There's no denying that this a very scary adventure you're facing, but everyone at House was incredibly helpful and supportive. The surgeons preserved my hearing (I had 85% and it's unchanged), and although I have some minor balance and facial issues, I think I did OK. I'd recommend them to anyone.
However, if you decide to stay closer to home, I think one of the most important questions you should ask the surgeons is how many middle fossa surgeries have they performed this month? this week? It's the trickiest of the surgical approaches and you want to be sure that the surgeon has had lots of experience. And if you don't feel secure, go see someone else.
Good luck to you,
Kathleen
P.S. This forum is so great and will give you so much help and info. I wish it didn't take me 4 months after surgery to find it!
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<---- 1/2 "unnatural" blonde that makes sure the gas tank for the hot air balloon is filled and ready for take off... for even Toto, too! :)
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<---- 1/2 "unnatural" blonde that makes sure the gas tank for the hot air balloon is filled and ready for take off... for even Toto, too! :)
Wait a minute - it's been a while since I've seen the movie, but I think it's Glenda the Good Witch's line to say "and Toto too". ;D
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Well of course "and Toto too" We can't very well leave out man's best friend can we ;D
Muchkin Phyl....Make sure we have a really BIG balloon!!! ;)
Good Witch Glenda