ANA Discussion Forum
General Category => AN Issues => Topic started by: nycnewbie on June 10, 2009, 02:48:00 pm
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Hey Everyone,
i know I already pretty much made my decision, but it was not Brackmann's choice. Have you guys ever sent your MRI to the House and gone with another surgery elsewhere?
I believe the House is the ****, but please give me some reassurance that people have still have had good results outside of House.
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Yes, many folks have had successful treatments not done at HEI.. or other facilities. There are many in NYC, like yourself, that stayed local. Many here treated at Mass Gen Hosp (Boston) that were successful. Many treated at Stanford that was successful... so, yes... there are many facilities doing successful treatments.
I won't sugar coat... not all AN treatments are successful either. Everyone deciding on a treatment option needs to fully weigh out all risks.... regardless of which renowned facility does the treatment. I know of folks that were treated at HEI, at MGH, at Stanford, that it didn't work out so well....
I sent my films to HEI when I first researched.. and for me, living in Boston, which is a medical mecca as well, I decided not to travel and have it done locally.
You will know what will work best for you... and trust your gut...
Phyl
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Thank you Phyl! I wish my gut spoke to me more...but I do believe in Cornell.
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Thank you Phyl! I wish my gut spoke to me more...but I do believe in Cornell.
it will.... you have done everything right.. .you have researched.. you have asked questions... you have looked at it from a wide angle.... and narrow angle, for your particular situation. Your gut will help guide. We had a recent discussion on the forums about following the gut reaction... got lively and interesting and insightful! You will know.. and trust it.
Phyl
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I know you are right...it's just so hard to believe...that this is my life at 29...I have so much more to do on this place called earth!
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I have so much more to do on this place called earth!
Yes, you most certainly do...
lemme see... was diagnosed with my AN 4 yrs ago (*coff* mid- *coff again* 40's)..... got my treatment... 6 mos later, got married (2nd go-round/remarriage, mind you....).... moved husband here from the UK... work full time..... organized the family wedding reception for all the families from the States, CAN and the UK...... volunteer on this site and on the ANA WTT list (which both keep me quite active)..... appointed by the town I live to be on their Commission for Disabilties (and twice voted as Secretary of the Commission)... let's see, have traveled from the States to the UK on 2 occassions since treatment.... traveled to ATL to visit family and meet some of the AN gang in ATL (blows cindyj a smoochie)...... keep a home.... organize AN brunches... yep, I keep busy and most of all... life not only moves on, but it thrives....
.... and it will for you too! :)
Phyl
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I can tell you that the traveling sucks too...I would suggest staying close to home since you live somewhere that has experts in this....I travel at least 6 hours for each appt in NYC which sucks...I really like Selesnick though and would not change my mind now
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Hi Serena,
People have had good results outside of House. Lots of them. :)
There is not enough time in anyone's life to do all the things that are possible to do after AN treatment. You will get to do plenty of things.
You have picked a well regarded surgeon at a good institution, and have every reason to be optimistic about the outcome. That is as much as anyone can do.
I think your gut is working just fine. ;)
Steve
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HI,
We did not go with House and there is many reasons why. So, We went with our University doctors. If you want to know our other reasons feel free to send a private message. :)
Robyn
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There are many successes outside of House. I'm one myself ;D
As long as you go with experienced doctors who have numerous AN surgeries under their belts, you'll be fine.
I had never heard of House prior to my surgery, but even if I would have, I wouldn't have gone there. Not all of us can afford to travel for surgery - financially and/or due to the time commitment involved.
Like Robyn, if you PM me, I'll be happy to give you additional reasons I wouldn't have chosen House.
Jan
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Serena,
Although House seems to be the gold standard, like you, many of us have opted to stay local. Many hospitals in NYC are reknowned worldwide as leaders in the medical community. If you are talking about the fact that House recommended middle fossa and you have decided to go with Steig's advice of retrosigmoid, then you have to make sure you have the facts on what the risks are with both approaches and decide what your priorities are. As my doc pointed out to me prior to my surgery, docs on the west coast use middle fossa most often when trying for hearing preservation, docs on the east coast use retrosigmoid most often when trying for hearing preservation. Only you can decide what risks you are willing to take, so if you've done your homework and reached a decision, don't second guess yourself. As I said in an earlier post you can drive yourself crazy with"what ifs". My best advice is be as informed as you can be and listen to your gut. If you do, it will tell you if you've made the right choice. And yes, at 29 you have a lot left to do, you will get through this.
Wendy
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The Midwest has University of Iowa which has a super neurotologist who does them on a frequent basis. Weekly one or two unless he is gone to a conference. Dr Bruce Gantz. The "Fellow" of neurotology does the open and shut of the surgery. Gantz is head of the whole ear,Nose and Throat dept which is rated 2nd in the country by the US News and World Reports rating. They are very big on cochlear implants also. I have NF2 and have had 3 tumors now and feel very lucky. I have been to 3 AN symposiums which the House drs attend and been to Slatterys NF2 session and know they do the same as my surgeon.
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Everyone!!!!!
Thank you. I know you don't know me and you probably think I am driving myself crazy at this point...which I am a little. It has only been a month since I have been diagnosed and I feel I have done everything I can...it's just harder when your hearing is good and you know you have a 50/50 chance. I could watch and wait...but it would drive me crazy knowing that I am only waiting for my hearing to go and more possible symptoms and know that I will never have a chance for hearing preservation down the line.
I know I just need to believe and stop second guessing...just so scared. I realized too many opinions are not always good.
Serena
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I sent my films to House, and it was a blessing. They were the first to really study my MRI and decide that I had a cpa meningioma instead of an AN. I had the surgery done locally in the Medical Center because I knew I had good surgeons and would have a better support system here. I am very grateful to the drs. at House because they took an active interest in my condition and sent me looking for answers in a more specific way.
Your life is not over. I returned to full time teaching and kept up with the kids just fine. I took 45 people to D.C. for 4 days and never missed a step. You will have to make adjustments, depending on your outcome, but you will see the light at the end of the tunnel. We all have! :) It just takes time, patience, and faith.
Priscilla
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Serena ~
As often happens, I'm late to the thread but just wanted to add my endorsement of your decision, which I know was much considered. I briefly considered going across the country to the House Ear Clinic for my surgery, but I found an outstanding neurosurgeon, very experienced in AN resections, located just 30 miles from my home I entrusted him with my surgery, instead. I've never regretted that decision. I doubt you'll regret yours.
Jim
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I went with my local doctor. I was very happy with the results. I just recently learned that my neurosurgeon is also a prof. Being in Canada not much is said about our Canadian docs. Most want us to w & w, but I wasnt comfortable with that and opt for surgery. Both my ENT and neurosurgeon supported me with that decision. I have very little issues ei balance and wonky head. I consider myself very lucky not to have the facial paralysis, eye problem nor the headaches
JO ;D
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House is a great place for treatment. I too did not go with them because I live in Ohio and frankly didn't want to be that far from home going through this. I had surgery at Cleveland Clinic and could not have been happier. It is important that you make the best decision for you and do what makes you feel the most comfortable. As long as you do your research and make an informed decision, you will make the best one.
Best of luck to you as you make your decision and work through your treatment and recovery. We are here for you.
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I'm another Ohio success story and was glad to stay close to home. I sent my MRI to House and they were very prompt in getting back to me....and they disagreed with my Ohio neurosurgeon's and neurotologist's recommendations. But, I researched and researched, knew exactly how qualified my Ohio surgeons were in these types of surgeries, and put myself in their competent and compassionate hands. I am doing great and have no regrets.
You absolutely can drive yourself crazy and you remind me of my quest to have ALL of my questions answered prior to the big decisions. Although you can't possibly guarantee your success based on good research, it is very important to know how experienced the surgeons are at these surgeries. Folks on this forum told me during my decison-making phase to trust my instincts - they said once I had met with a few surgeons who I had found through good researching (House was included in that research), I would know. It worked out just that way for me.
Best of luck to you...I'm wishing you peace of mind whomever you choose for your surgery!
Kathy