ANA Discussion Forum
General Category => AN Issues => Topic started by: robynabc on May 21, 2007, 02:41:58 pm
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HI,
I sent my 18 year old son's MRI's to House last Monday. They have not called and everytime I call them they hang up on me or I mean we get disconnected. I need to talk to them so I can make a desicion. When I talked to someone last week they said that Brackmann would call us but he is on vacation. So I told the nurse we could wait until today but I called again and they seem confused about me even sending the MRI's. Has anyone else had this problem? Thanks in advance.
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anyone I've talked to said they we very good about returning calls...did you leave you phone and name on the MRI ?
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Yes, I did. Then I gave the number to a nurse last week and sent it with the MRI. I told her I would talk to another doctor if possible and she said I should wait for Brackmann. When I called about sending them the MRI's they were confused and seemed apathetic. I don't know what to do. I have to make a decision by tomorrow or Wednesday.
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Robin,
This is very unusual for them, but that is beside the point right now. My wife had Drs. Friedman and Schwatrz on her team. I would suggest you ask if Friedman can look at the scans and talk with you. He is terrific.
Good luck,
Fred
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HI,
They called. and I am so confused, I don't know what to do. I talked to Dr. Brackmann. He completely disagreed with the approach of going with Retrosigmoid even though Eric has perfect hearing. I am not a doctor and I don't know what is better. He said there is an advantage of doing this translab and said right to me he disagrees with the Retrosigmoid. This decision is now really difficult. He said our surgeon has a good reputaion but wanted us to go out there. I don't know what to do. This is terrible. I feel like our whole world depends on what I decide and I don't know what to do because I am not a doctor and they have different opinions. I know that house is really good but I don't know if my HMO is going to cover this. I am not feeling comfortable with this decision. I felt Dr Brackmann was way more pushy than my other doctors have been. Even though he was very kind about it.
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Oh Robyn - I feel so bad for you.
First, you must try to relax, take a big breath and do a little more research. It is not unheard of to get a third opinion. I have been hanging around here for a year and have seen this same thing many times.
Did Dr. Jenkins give you the odds on saving your sons hearing? Usually the larger the tumor, the lesser the chances of hearing preservation. My guess, and only a guess, is that Brackman wants to use the translab approach because your son's AN is quite large. They can just plain see everything much better with the translab approach.
In the end, you should go with your instinct, gut feeling and the surgeon you trust completely. That way, you won't be saying you wish you would have.
My best to you and your son, Kathy
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See I have been reading that the translab is better for facial nerve but Retrosigmoid is better to see brainstem. From what I have been reading House just plain does translab for most things. That is how they like to do it. I am not sure of this but it is what I have been reading. Thanks for the info. I am going to call our doctors and find out what thier opinion is about the different approaches. You know what I don't care about the hearing I care about the facial nerve and the brainstem. If Retrosigmoid is better for brainstem that is what I care about.
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HI,
We need a third opinion. Does anyone know of anyone else we could get an opinion from? THanks.
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Translab is the safest surgery and shortest. Relax, go with Dr. Brackmann, he is the best in the world, and you are almost guarenteed an excellent outcome, i.e. no spinal leak of facial palsy.
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Robin,
This is very unusual for them. Dr. Brackmann called me for many months, while I fought with HMO to get coverage, and wasn't pushy in the least, but was rather calming to me, with his experience, literature, and the recommendations of others in this and other forums, and other physicians. I didn't get translab, got middle fossa, and couldn't be happier, or healthier.
I don't know of anyone to recommend, because my HMO tried to send me locally to an inexperienced surgeon, and I knew after doing research, that HEI and Brackmann were the ones I wanted, and didn't let up till I got it. I would explore this forum for others that have had Brackmann, or the other surgeon, or the translab or other procedures you are considering, and get their input.
Good luck.
RON T.
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Having to make a decision "tomorrow" may not be necessary. There is usually no emergency. A few weeks one way or the other will not make a difference. maybe even a few months.
Do not make a decision in haste, or let anyone push you into doing so. Take your time to make an informed decision you feel comfortable with.
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Robin,
Although you experienced Brackmann as pushy, I would give him another shot. My wife had Friedman and he was great. We did not meet Brackmann, but most people who post here say that he iis anything but pushy. I say give him another shot because I do not believe there is a better surgical option than House.
Now, if you want to look at another option, you might consider radiosurgery. My wife and I seriously considered that and ultimately went the microsurgoical route. But, radiosurgery is a reasonable option. Many folks here are high on Dr. Chang at Stanford. If you choose to go this route, make sure you read the literature on Medline carefully as well as ask lots of questions.
I also heartily agree that you should not rush this decision. It's way, way too important to do that.
Good luck,
Fred
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Translab is the safest surgery and shortest. Relax, go with Dr. Brackmann, he is the best in the world, and you are almost guarenteed an excellent outcome, i.e. no spinal leak of facial palsy.
As folks here know, there are many wonderful AN surgeons across the states. HEI is most certainly reputable and definately do the highest amt of AN surgeries... thus, wonderful stats. Please keep in mind that there are many others across the states that many here can attest (ie: McKenna/Barker at Mass General, NYC, FL, Stanford, etc). While Dr. Brackmann certainly ranks up there in quality, please keep in mind that many others do as well.
As always suggested, please research, research, research. Ask particular dr's for patient references. You can also check their background with State Board of Registration of Physicians to see if there are any malpractice issues in their history.
There are many that are quite pleased with HEI/Dr. Brackman... and there are many here rather pleased with their particular microsurgeons as well.
Thanks.
Phyl
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Hi,
Thanks for all the info. Forgive me for saying this. I know that House is great and everyone likes them. But some questions I have about them is 1) THey have never had any bad results?, that does not seem possible to me. 2) They don't follow alot of their patients long term so how do they know about long term results? I have a young one here and that concerns me. And how easy is it to change doctors after the surgery? The other thing is that no other doctor told me that they were the best and I should be going to them. I was told there were other doctors to check out yet I was pretty much told by House I should be going to them. I know everyone seems to like them but something doesn't seem right about those questions. I thought that you should not be pressured to go to any particular doctor. I feel comfortable with my son's doctors but I somehow feel as though I should want to take him to House. It is making my decision very difficult. I find it a bit suspect that I don't hear anything else about House. THanks for all the help from everyone. I don't want to be the only one who wonders but it seems like I am.
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I had AN 1-1/2 years ago and went to House. They did a middle fossa procedure. Unfortunately, they can not see the whole tumor with this procedure. They originally went with this to try and preserve my hearing. I lost it anyways. 2 weeks ago, I had the translab done since my tumor came back. This time, they said they got the whole thing out since they were able to see everything with this procedure.
My opinion, House does deal with AN a lot. Approx. 200 + per year, while other places deal with AN maybe a couple of times a year.
I also have a friend that is an audiologist and she had said that I was with the best doctors in the world that deal with AN. They do get patients from all over the country/world that go to them due to their reputation.
If you are still unsure, a 3rd opinion might give you more relief or more confusion. You may end up with 3 different opinions. I also did extensive research on AN and the different procedures. I felt that I was in the best hands for this and have no regrets, even with the loss of my hearing.
Linda
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Robynabc,
I think Phyl's earlier post was spot on in that there are other very experienced and successful AN surgeons around the country other than just those at House. I'm more familiar with the Northern CA area and probably the two best here are Jackler and Roberson and I would certainly put either of them on par with any of the docs at HEI. Because they specialize in AN's I do believe that HEI does have better results more consistently than many places, but they also clearly have their share of bad results. Over the years I have read posts from people who have had simply excellent results as well as those where deficits have occurred as well. The standard for measuring facial nerve function is called the House-Brackman scale and I think it's fairly safe to assume it's development was based on their overall experience over the years. It would also be my perspective that the "pressure" you referred to reflects the fact that a) they are very good and have a lot of confidence in their abilities and b) their sole "business" is AN's.
So, I think the points you raise are very fair and in the end you need to use the surgeon(s) you feel most comfortable with in treating your son. I certainly feel that your son would get great care at HEI, but there are certainly a number of world class surgeons with significant AN experience at leading medical centers around the country who would do an equally good job.
Just my 2 cents
Mark
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Hi Robynabc,
I know this is incredibly stressful. The scary part is that your child, like mine, count on you to make this decision for them. When we were faced with this situation we were sent to a very quilified pediatric neurosurgeon at Loma Linda University Hospital. For some reason I just felt unsure with Loma Linda. I don't know why. They have a fabulous reputation, just a gut feeling. Within 18 hours I started calling all my clients that are doctors and asked their opinions. Without fail they all said UCLA even over Cedars and House. Chelsea's tumor was huge and we were given all the pros and cons of the surgery. We were 100% sure we were at the right place. At UCLA they work in a group, each doctor is very specialized in their area of neurosurgery. Her main neurosurgeon is Dr. Donald P. Becker, shunt neurosurgeon is Dr. Bergsneider, radiation-neurosurgeon- Dr. DeSalles, head and neck surgeons-Dr. Canalis and Dr. Sercarz, and radiation oncologist-Dr. Selch. With what we were facing and all the potential complications that could and did happen we are totally thrilled with her out come. She has only a half dollar size numb spot on her cheek and deaf in the right ear. She is still on this long road called recovery but improves daily. When it comes down to it, I think it is a matter of who you feel most comfortable with. Michelle
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Like any mortals, House has results where there are complications. They will quote you those numbers based on their own research. In their hands, these risks are very small, but they are there. They do scholarly research on their patients and follow them long term from that point of view. If you call them long after surgery, they call right back.
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HI,
I want to thank everyone for thier great information. I talked with both doctors here at University of Colorado again and we have decided to go with them. Because there is brainstem involvment I was very interested in a really good neurosurgeon and I really feel comfortable with Dr Lillehei. He does many many tumors and large ones especially. I am feeling better knowing that the decision part is over with. That was agonizing. Now we can focus on the surgery and recovery. Thanks again for all the info.
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HI,
I sent my 18 year old son's MRI's to House last Monday. They have not called and everytime I call them they hang up on me or I mean we get disconnected. I need to talk to them so I can make a desicion. When I talked to someone last week they said that Brackmann would call us but he is on vacation. So I told the nurse we could wait until today but I called again and they seem confused about me even sending the MRI's. Has anyone else had this problem? Thanks in advance.
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robynabc - It is important that you feel comfortable with the doctors. Even though I sometimes wonder what my outcome would have been had I gone to House, it wasn't really an option living in Ohio. I couldn't even imagine all the logistics of travel and such...working things out for a hospital only 45 mins from home was hard enough.
I had a 4 cm AN with lots of brainstem involvement, I had near perfect hearing. The drs did retrosigmoid and were able to remove it all. I did lose my hearing but the tumor was very sticky and stuck to the hearing nerve.
Good luck to you and your son and when is the surgery date?
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Hi,
I am surprised no one has mentioned barrow neurological institue in Phoenix, AZ. I hope to go there for a neuroradiology fellowship and was amazed with this hospital and its reputation. They have an acoustic neuroma center. Dr. Spetzler is one of the top neurorsurgeons in the world and a team of 26 neurosurgeons of this caliber are hard to find anywhere. I do not want to confuse you with more choices and as someone has stated earlier you have to try to breath, relax, and not digest to many facts and figures with the intent of placing it all on your shoulders. It is necessary and important to be involved, but once you are dealing with the best, you have to work with them in understanding the risks and benefits. They want the best outcome also and most neurosurgeons by nature despise failure. The Barrow neurological institute is amazing and they have acheived their worldwide reputation by the great presurgical planning and technical expertise of their surgeons and supporting staff. Definitely look into this place and Dr. Spetzler; however, if you are commited to the doctors you spoke about above then work with them with confidence. I wish your son the best of health!
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The first opinion I received by a local (Providence, RI) doctor I was referred to told me it was a very small growth and would be simple to remove with translab. He told me to talk to his receptionist to schedule surgery right away and take care of this. No options were discussed with me and my hubby left there thinking it was a very easy removal. After I started researching on my own, I got two more opinions from Boston (surgery) and Gamma Knife options. My point is, if I had listen to the first and did it right away, would I have regretted it? Absolutely. Do your research, if you still feel uncomfortable, do more research until you feel comfortable with your doctor and your decision.
Patti
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puffy cheeks-thanks for your input!
I still don't have a surgery date as yet but am definitely going to the House Ear Clinic Neal