ANA Discussion Forum
Useful Information => Physicians => Topic started by: DanW on March 28, 2011, 10:30:07 pm
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My 22 year old daughter was diagnosed in Oct2010 with 4x6mm AN. No growth over 4 months.
She has been focusing on finishing her schooling and my wife and I are talking on the role of researching and filtering data. We have spent the last few months reading and researching options. Thanks to the many Medical journals, references, and posts with info and opinions.
Decisions are not always based on facts. For her, she is just finishing teaching degree and looking forward to getting on with life. She will never be able to pay for AN surgery without a good group health insurance policy, not a guarantee in today's economy, today she is under my insurance. She is leaning toward surgery. She really wants to "get this thing out of me" and get on with life. We have seen a couple AN teams, UofMN and Mayo Rochester MN. They both encourage surgery while AN is small and she is young and healthy. We also recently heard good things about Univ. of Iowa and Dr Gantz. If anyone has any insight if would be appreciated. We just talked to HEI Dr. on Friday who also recommended middle fossa surgery. I learned more in 30minutes on the phone than from 2hrs with 2 different AN teams. After this discussion my daughter is strongly leaning toward a 2 week trip to LA.
From reading this forum, it sounds like this would be the consensus of this group.
Thanks
Dan
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Hi DanW!
Welcome to this Forum - WONDERFUL folks here who have lots of information on ANs, treatments, etc.
I think it is fantastic that you are helping your daughter with all the AN research, it can be pretty daunting.
[I am trying to help my own 22 year old daughter with some medical research as well, so i can relate.]
As others will tell you, having an experienced surgeon is definitely a necessity. I too, have spoken with HEI and they are so knowledgeable.
Since I am still in Watch & Wait mode, I have not made a treatment decision to date.
Best wishes to your daughter as she continues on her AN journey.
Prayers all around that she will find the answers she needs and be able to move on with her life.
Sincerely,
Sue O.
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Hi Dan and welcome to this forum .....
Glad you are helping your daughter by doing some of this research for her. As a retired teacher, I can understand her wanting this thing taken care of and getting on with life as a teacher.
Cheryl will undoubtedly be posting here shortly as her doctor is Dr. Gantz at Iowa City ...... very impressive from what I can gather.
I am in the insurance clearance step before hopefully going to HEI for my second AN surgery.
You are wise to seek out the best care possible. Let us know what she decides.
Clarice
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Hello and there have been several of us have surgery with Dr Gantz. Her AN is small and she does have time to make the right decision for her. I know Iowa City well due to having NF2 and now 4 surgeries there. 3 tumors and older adult onset of NF2. Depending on her tumor location and if still has good hearing, he would do mid fossa which he does do frequently while some neurotologists do not. There have been several that have been on here go to him, some from out of state. I was very happy with my last surgery in April 2008 that I was almost all deaf and we were planning a cochlear implant soon after the surgery. My hearing did the rare happening of improving and the CI was not needed. I go see him a week from tomorrow for my annual MRI and appt. I have been going there now for 10 yrs and last time I asked was at least 60 surgeries a year and he is very well known for his CI's too. I have a feelling is more ANs a year since I last asked. Each person with surgery has their own recovery due to the size and how the body has compensated for the tumor. A smaller one may have less damage to the nerves but that can vary too. Feel free to ask all the questions you have here and we can be of help.
Cheryl R
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Hi, Dan - and welcome ~
I'm glad you found the ANA website message boards and decided to post. First, kudos to you and your wife for assisting your busy daughter in researching her options on addressing the acoustic neuroma. You seem to be on the right track with your physician choices. As you noted, HEI is renowned for its AN expertise with a great staff and is usually highly recommended. However, it isn't the only excellent facility in the country. The other institutions you noted also have good reputations among AN patients who have had surgery there. I'm sure you'll receive a lot of responses from our members who can attest to the quality of the doctors and staff at these institutions. I underwent very successful AN surgery (and follow-up radiation) at a small hospital in a small city in Connecticut but my neurosurgeon and radiation oncologist were top-notch. My successful outcome is mostly attributable to these doctors yet they are not famous or even that well-known outside of their area. This is fairly common. Many of our members who enjoyed good outcomes had relatively 'unknown' doctors. However, the 'Big Names' are usually 'big names' for a reason and had I not found the doctors I had, I was prepared to travel cross country to HEI in Los Angeles to receive the best care and, hopefully, a great outcome, which is exactly what I wish for your daughter. :)
Jim
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We just talked to HEI Dr. on Friday who also recommended middle fossa surgery. I learned more in 30minutes on the phone than from 2hrs with 2 different AN teams. After this discussion my daughter is strongly leaning toward a 2 week trip to LA.
Hi, Dan,
As is true of everyone else, I can only speak of my own experience, and I'll preface it by saying that there are numerous physicians in the country who are quite skilled in treating acoustic neuromas. I travelled from my home in New Jersey out to House three years ago for my AN surgery and would do the exact same thing again in a heartbeat.
Best wishes to your daughter!
Catherine (JerseyGirl2)
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Dan,
My tumor was much larger than your daughters and I had two prior surgeries to debulk prior to a translab at Mayo with Dr. Link and Dr. Driscoll so my situation was a little different. I consulted with the U, Dr. Haines and Dr. Levine before I made my decision. I live in the twin cities and it is nice to be close to the hospital but I went with Mayo based on reputation. It is a phenomenal facility. Also, an ENT, who performed translabs until a recent medical condition ended his ability to do delicate work, that I consulted with told me I could not go wrong with either team.
Being close to home is a major benefit. Especially for follow up. Just my two cents worth.
Tim
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One of the many challenges in deciding where to go and who to have perform surgery is determining the the relative experience of the doctor performing the specific procedure. In our daughters case it would probably be Middle Fossa approach. Which it appears is the least performed procedure. As I say, doctors are always practicing, some have more and therefore are better. It is our job to figure out where we have the best chance at success. During our meetings and followup at Univ. of MN and Mayo we inquired into numbers of surgeries and number of Mid Fossa. The UofM was specific in the response including the total and recent numbers of Mid fossa approaches. We got a different response from Mayo. They have been working as a team for 13 years and have done many surgeries. Not a very helpful response. As I read their published medical papers (on this site in medical journals, the numbers look pretty small).
I am I expecting too much when I ask for specifics?
This is my daughters future, I think we deserve to know how much "practice" a doctor has.
Please set me straight if I need to be.
Thanks
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Hi Dan
I didn't get a chance to ask my doctors how many ANs they'd done as I was on a short list to get the thing out.
When I last saw the ENT about the 12/7 nerve graft (I have facial palsy when the nerve decided not to work again) I asked how many he's done - he said "6". Here in Australia ANs aren't common so therefore our doctors seem to be practicing new and improved methods all the time.
You have every right to get a definitive answer from any medico.
I applaud you for how you are supporting your daughter. Well done mate.
♥ ´)
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(,.•´ (.♥ •´ *Suu
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Dan, Have you also been able to see on the mid fossa, what their results have been also. I know I mentioned Iowa City to you and that is up to you if you are interested there. I go there tomorrow and can ask Dr Gantz how many he has done and his results. I have been going to him for 10 yrs and know he has been there for longer than that.
Cheryl R
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Dan,
You are right to ask a lot of questions. I did not initially and relied on direction from the medical team.
I don't know much about the Middle Fossaa approach but have experienced the other two. Is that the approach that is being recommended by all of the Dr.s that you meet with? How many is a lot? With the translab the Dr.s at the U and Mayo have hundreds under their belt so that made me feel pretty comfortable. I think AN experience is probably as important as experience with a certain procedure. However if the consensus is that the middle fossa approach is the best for her situation and someone specializes in that approach I would definitely lean toward their care.
I know from having three craniotomies that if all things are equal I would choose a facility that is close to where I live. I drove to Rochester yesterday to have sutures removed. Knowing that the Dr.s are that close is very comforting. The U would have been even better because of proximity.
Best wishes,
Tim
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Dan,
I applaude you for looking for the BEST doctor for your daughters care. I am looking for the same!
I was diagnosed with AN 2- weeks ago March 24; the first week I had a week long headache (suffer from migraines anyway usually last 3-days per event) Scared out of my mind. Prior to March 24 (January 24) , I was diagnosed with severe Vertigo home/off work for 5 weeks working from home since 3/1 (that is stressful) -- Vertigo has not gone away. I have slight hearing loss and vision is impaired.
my tumor measures 5.5 x 2.8 mm don't know how long I have had the tumor. I live in Forest Park, IL just outside Chicago, my initial consultation was with Dr. Mark Wiet at Rush - I have my second opinion with Dr. Leonetti at Loyola. I have also contacted the Mayo Clinic (setting up a consultation).
Have you researched the Skull Base Institute in Los Angeles, CA? When doing research, the Institute pioneered endoscopic pituitary surgery (10 years). They have successfully treated over 4,000 patients around the world. Endoscopic surgery is less invasive --
ibelieve2 / Denise (54)
4/7/2011
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Dan -
family support is very important during the AN Journey; I'm glad to see your daughter has yours.
I'm one who had my surgery close to home (Illinois) and I've never regretted it. While HEI is wonderful and the doctors there are great, there's a lot to be said for qualified, experienced doctors that you don't have to travel large distances to see. Bottomline, Mayo is a great place and I wouldn't discount the docs there.
Personally I wouldn't go the endoscopic route, like Denise suggested, but some have and they are happy with the results. Endoscopic isn't the norm for treating ANs. Maybe one day, but right now it's too new for my tastes.
If you haven't already, contact the ANA for their free informational brochures; they are very well written and extremely helpful.
Just my two cents,
Jan
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Dan, You may not have read of my answer to the mid fossa that I asked about at Iowa City. First i asked the audiologist who did my hearing test as she is one that does the pts whose hearing they are trying to save. She guessed it was around 30 a year. I asked Dr Gantz once I was able to breathe easy that I have no new tumors. He said he does between 35 to 40 mid fossas a year which is more than Mayo. He is able to retain the hearing in 75% of them. House said they retain between 75-80% of their mid fossas. These are both in pts with smaller ANs. Gantz said smaller AN and House says under 1.5. The House info was given at a symposium. So just some info for you in your decision about where to go.
Cheryl R
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My Daughter has decided on Dr. Gantz at Univ. of Iowa. His openeness and willingness to discuss his relevant experience and what is important to her really helped her. In addition to his top tier experience in Middle Fossa the proximity of Iowa allowed more of her support to travel to be with her. Surgery is is scheduled for May20th. Her decision is right for her. Everyone needs to be at peace with whatever decision they make.
Thanks everyone for the opinions and insights. Especially Cheryl.
Wow this is happening fast!
Thanks
Dan
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Dan, Good to hear of your choice and hope all goes well for your daughter! The whole AN business is not fun esp right past surgery but it does get better in time. Feel free to ask any questions you may have about surgery. Plus make sure you get the hospital rate if staying at a motel. May 20th will be here soon and will be thinking of her!
Cheryl R
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Dan .....
So glad you have made a decision on treatment ..... that is one of the hardest parts of the whole journey.
Thoughts and prayers that all goes well. Be sure to let us know how she does. Maybe she can register and join us here on the Forum, as well.
Clarice
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Dan ~
Congratulations on arriving at a decision on a treatment and the doctor to perform AN removal surgery on your daughter. Dr. Gantz has a fine reputation and I'm sure he'll do an excellent job. Your comment about being 'at peace' with the decision for the type of treatment and the doctor to administer it is absolutely correct. Your daughter (and her parents) will be in our thoughts and prayers as May 20th approaches.
Jim
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I wanted to give an update on the surgery.
The insurance coverage was an issue down to the day of the pre-op, in the end they agreed to cover like In-Network because of the experience of Dr. Gantz. Lots of stress but everybody was happy going into surgery. She had 3 people for support, me (dad), her mom and her boyfriend.
Surgery was done on 5/20 by Dr. Gantz and assistance from Dr. Mawry (sp?). He came out when he was done about 1pm and said he was able to all of the AN out and preserve both facial nerves and hearing. The 3 of us were so happy. The best possible outcome! WOW.
About 24hrs later the brain swelling started to have significant impact on her cognitive abilities. There were 3 noticeable areas: 1) Not understanding questions, I pointed at clock and said "what is this object" she said 5pm (the current time). 2) She struggled finding the right word, she pointed at a fan in the corner and said "fix the ice", I said do you mean the fan, she said yes. 3) She was also was able to identify a phone correctly, but didn't know what it was for.
They did a CT scan to confirm no bleeding Sat night, it showed swelling but no bleeding. They moved here to Neuro IC unit to make sure she was monitored closely, every 2 hours. The DRs indicated that the language issues were specifically impacted because AN was on the Left side, Left Frontal Lobe is the language center. She slowly continued to decline, they did an MRI on Sunday night to confirm still no bleeding, and wanted to confirm no stroke. Monday early AM the Chief of Neuro came by and talked to me and said no strokes, just swelling and it should improve soon. By Monday night we started to see improvement and moved out of Neuro IC to normal room, by Tuesday AM we saw more improvement, and more yet Wed AM.
We checked out Wed noon and stayed in Iowa City until noon the next day before drive back to TwinCities. All of us needed the sleep. After 5 days of rotating shifts and not much sleep we all slept well. The drive wasn't too bad for her. She napped alot. We stopped a few times to get her out and moving so she was tired and able to sleep for the next driving section. We took 6 hrs for a 4.75hr drive.
She is not having problems 1 or 2 but still is having a few issues with some understanding in reading comprehension etc.
She is walking about 2 times a day for 3 blocks. Having some "dizzy" issues but not really sick. This is way better than I expected. She over did it yesterday, after getting out stitches, she cleaned here room for 4 hours. Today she has had headaches and she has been dizzy much of the day. We expected ups and downs, today was a down. But in general she is progressing well.
Thanks everyone for your kind words of encouragement. We couldn't be happier with our decision and results.
Thanks to Dr. Gantz and his Univ of Iowa team!
Dan, and daughter Marie.
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Dan and Marie. Thank you for letting us know about how Maries surgery went. She was in my thoughts the 20th. That is too bad that there was some problems for some worry for you. That did also happen to me my last surgery which I do mention some. My surgery was also on the left side and there have not been many posts of this happening during my long time of being on here. I stayed in the regular surgical ICU and had surgery on Thurs and and better by Sun and to regular room Mon. I had a CT scan done which showed it. I had some forgetfulness over a few things. Recovery like usual once over it.
She is still soon after surgery and will have up and down days. I hope it goes well now for her and all of your family.
Cheryl R
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Dan & Marie ~
Thanks for the update and congratulations on reaching this point in your daughter's recovery process. Yes, the initial swelling can wreak havoc on the patient for awhile but, thankfully, this usually resolves, as it did for your daughter. The recovery process is often slower than the patient would like and setbacks stemming from over-exertion are fairly common. The good news is: it gets better.
Jim
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We wanted to give one more followup.
Marie is doing very well!
She had her followup in Mid June and got a all clear on the MRI, she still had some fluid in her ear and her incision was sore but since then all issues have been resolved.
In her words, she is feeling normal.
She has no effects at all from the surgery. She feels her balance is normal, with no dizziness at all.
After the fluid in her ear has drained and all infections and swelling are gone her hearing is the same as it was before surgery.
WOW, the results are way beyond our expectations.
We feel so blessed that she had such fantastic results, your help in finding the best surgon DR Gantz, the stress of fighting with insurance to get her to the best DR was very much worth it.
I encourage everyone to fight for the best possible treatment, not just what is covered by the local specialist.
Thanks, everyone for the support.
Dan and Marie
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Dan and Marie. I am so glad to hear this as I was wondering how she was doing now! I am glad I mentioned Iowa City to you. One can be nervous as to where the AN is in a person can make a difference in their outcome and can cause some issues no matter where they go! I am happy for Marie and wish her a wonderful life ahead! Cheryl R
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Dan .....
What a splendid outcome for Marie!! So happy that all is well and she can get on with her life.
Clarice
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Dan ~
Thanks for the update on Marie and that splendid news! I'm just so happy for her. We were glad to offer the support and are all thrilled to learn about Marie's fantastic recovery. Have a great summer! :)
Jim