ANA Discussion Forum
Useful Information => Physicians => Topic started by: geexploitation on May 07, 2012, 04:22:24 pm
-
Hello,
I'm new to the site and need some advice on where to seek treatment. I have a large AN in the cerebellar pontine angle. It's obvious that I need surgery and I'd like to get it done this summer. I'm located in Indiana, where the treatment options don't seem to be the best, so I'm thinking of traveling for surgery.
My main concerns in surgeon selection:
-- Expertise and experience. Aside from tumor size and location, the best predictors of surgical outcomes.
-- Surgeon comfort with subtotal resection. I am nearly symptom free (fullness feeling in my AN ear, audiogram normal, otherwise nothing), so I have not given up all hope of retaining some hearing (although I'm planning on SSD). It seems likely to me after reading all the literature I can that treating the nerves very carefully, and erring on the side of caution with partial tumor removal, might help in my outcomes.
-- Insurance coverage. Some of the usual suspects mentioned on the boards (e.g., Friedman at House) aren't in-network for me. Money isn't everything and I'm willing to go into debt, but I'm a grad student so my ability to pay down debt will be compromised for some time. So that might be a hard decision.
I have looked through the surgeons listed on ANA.org and mentioned in the forums. Considering the insurance network thing as well, it seems the following places might be possibilities for me. I wonder if you fine people could offer some feedback on these centers and the docs who work at them, especially in regard to the partial tumor removal thing. But really, any feedback would be welcome.
House in LA -- Brackmann, Derebery (maybe others?) are in my network
Ear Institute of Chicago -- Wiet the elder or Battista?
Vanderbilt in Nashville, TN
New York University
Mass General Hospital/Mass Eye and Ear Infirmary in Boston
If anyone out there has any feedback about these places that they think could benefit me, I would love to hear it.
I have found this site fabulously helpful so far. Thank you so much!
-
Hi geexploitation and welcome to this forum .....
Tell us what you mean by large AN. Did your doctor give you any dimensions from the MRI? My doctor called my 2+ cm AN large, when in reality 2 cm is really medium sized by most physicians' standards today.
I am puzzled by something in your post. If House and Dr. Brackmann are in your insurance network, then surely Dr. Friedman at House is ..... as far as I know, all of the billing for all House physicians goes through House Research Institute and/or St. Vincent's Hospital (where they do most of their surgeries). I would strongly urge you to contact the insurance department at House and ask questions.
If your AN is indeed large, you really want to go to a medical facility and surgeons with vast successful experience in AN removal. Several on your short list are well-known for successful AN removals.
Tell us a bit more. We are here to support you all the way in the decision-making process and beyond.
Clarice
-
By large I mean 4 cm x 2.8 cm (the third dimension isn't in the MRI report). Sorry I didn't mention it; all of the medical literature I've read classifies tumors with average diameters of 3 cm as "large," so I assumed the terminology was consistent.
On the insurance front, I am in the process of verifying whether other doctors at House (and other places) might actually be in my insurance network. They are not listed in the database of docs that's available to me as a patient. But obviously that requires verification. FWIW, when I talked with House today I told them about this issue and they seemed not a bit surprised that some of the doctors there would be in-network for me and some would not be.
And yes, experience is a primary concern for me. But I'm also trying to take the insurance thing into account... and if all other things are equal, location might matter too, in terms of being around family for support.
Some other details that might help... the size of my tumor, where it's placed and what structures it's impacting (shifting the brain stem, not involved in the IAC) indicate I need a retrosigmoid approach. House appears to have a good reputation for doing this surgery, especially in regard to the headache thing, but I'm trying to figure out why that is. Is it a specific surgical technique, like a CSF drain or how they patch up the skull after surgery?
I have very few symptoms, which I think provides an opportunity for a really good surgeon to have a big impact on my case. Yes, my tumor is large and my hearing is probably going to go on my right side, but someone with expertise might be able to fix me up with very little in the way of other side effects (facial stuff, balance).
Time is somewhat of the essence here, since I'd like to get this done as soon as possible while also allowing for some accurate research and decision making. My tumor's big enough that it makes sense to operate now, plus if I can do the surgery during the summer I might be able to miss less work in the fall. That's not the most important thing here, but just one other thing to consider.
If there's any other information that would help, I'd be glad to provide it. Thanks for responding to my post!
-
You might want to send your MRI to Dr. Lunsford at the University of Pittsburgh Medical Center. Depending on your symptoms and what he sees, he might accept you for Gamma Knife treatment. My AN is 3.3cm and I was told by a number of doctors that surgery was my only option. One doctor suggested I talk to Dr. Lunsford and I had Gamma Knife surgery in March. So far, so good and it certainly eliminated the concerns I had about surgery. I flew into Pittsburgh on Monday, had the treatment on Tuesday and flew home on Wednesday. I talked to someone who had the surgery a few months before me and he described it as a "nonevent" I would agree with him. I wish you the best with what ever path you decide to travel.
Bill
-
Since you are willing to travel, Dr. Chang at Stanford is well regarded and Dr. Fukushima at Duke. Search the Physicians thread for these names to read other posts. My eye doctor mentioned to me that Dr. Fukushima is well regarded in brain surgery for different tumors.
-
There is Dr. McKenna (MA Eye & Ear) and Dr. Barker (MA General) in Boston. Good luck on your journey.
-
Traveling is one thing, but seriously how far do you want to travel - especially if you don't have to?
I vote Battista @ EIC - because I'm a patient of his, had a great outcome, and absolutely love him (incredible doctor).
You also can't go wrong with Wiet (the elder). I'd stay away from Wiet (the younger) simply because he's not as experienced.
Good luck - and if you want to know any specifics about Battista or my outcome, PM me.
Jan
-
Thanks, everyone!
I have seen the names of McKenna and Barker before -- if anyone has direct experience with them that they'd be willing to share I would love to hear it.
Regarding traveling, the northeast might be the easiest place for me to travel to since that's where I'm from and I have an extensive social network there. So it would be easier for me to go there than mere distance might indicate.
Thanks for the Pittsburgh suggestion, Bill, but I'm not comfortable going the radiation-only route with my tumor. I think surgery makes more sense for me.
Does anyone have any insight into the reasons behind the "House patients don't get headaches" thing?
Again, thanks!!!
-
Thanks, everyone!
I have seen the names of McKenna and Barker before -- if anyone has direct experience with them that they'd be willing to share I would love to hear it.
Regarding traveling, the northeast might be the easiest place for me to travel to since that's where I'm from and I have an extensive social network there. So it would be easier for me to go there than mere distance might indicate.
Thanks for the Pittsburgh suggestion, Bill, but I'm not comfortable going the radiation-only route with my tumor. I think surgery makes more sense for me.
Does anyone have any insight into the reasons behind the "House patients don't get headaches" thing?
Again, thanks!!!
Hi and welcome.
Many, many on these forums (and not) that are local to Boston and have had Barker/McKenna do their AN surgeries. I was recently informed that Dr. Fred Barker will be joining the ANA Medical Advisory Board (along with another local Boston member, neurosurgeon Dr Elizabeth Claus of Brigham Woman's). Barker and McKenna at MGH/Mass Eye and Ear have certainly developed a wonderful AN reputation in the NE for AN treatments. They were not my treating team (I had Cyberknife radiation at Beth Israel Deaconess in Boston) but..... all in all... Boston is a medical mecca and the reputations of those noted may be worth checking if looking to have AN treatment in Boston. Yes, I'm partial to this as a true "Bawstonian" :)
Phyl
-
Good Morning geexploitation,
I had both Dr. McKenna and Dr. Barker with a very good outcome. Had my surgery 01/10, An was small but the location wasn't the best so it needed to come out. Fatigue was my worst compaint and wonkey head was a definite close second. Other than that I am 99%.... A little facial weakness if I get really tired, sm headache when the weather changes, wonkey head, ssd, and sometimes I wobble like a Weeble (now I am dating myself) but all in all I am great. The summer of 2010 I was back riding my horse, hiking in some awful places, doing agility with my dog and all the day to day stuff.
Dr. McKenna is very low key & explains anything & everything. No question is to small to ask. Dr. Barker is very up front. I really liked them both.
Good luck on your journey.
-
Thanks, Phyl and Lynn Mc. I will look into seeing McKenna and Barker. :)
-
I had retrosigmoid with Barker for a 1.4 cm tumor. I had a great outcome. Barker has tons of experience. Feel free to PM me any questions. Best wishes.
-
Does anyone have any insight into the reasons behind the "House patients don't get headaches" thing?
HUH?? I think Captain Deb had her surgery @ House and she's one who has been hit hard by headaches for years.
I think headaches are just something some get and some don't - regardless of where they were treated.
Some will tell you that those of us who had retrosigmoid (aka sub-occipital) experience headaches, but that's not always true.
I had retrosig and don't get headaches and I know there are others on this Forum as well.
Jan
-
Does anyone have any insight into the reasons behind the "House patients don't get headaches" thing?
HUH?? I think Captain Deb had her surgery @ House and she's one who has been hit hard by headaches for years.
I think headaches are just something some get and some don't - regardless of where they were treated.
Correct Jan :)
Capt Deb has been diagnosed, post surgery, with "cluster headaches" and has had all forms of treatments, including Imitrex and Botox, if my old age memory serves me well. Last time I spoke to her, still no relief..... still on-going. Her surgery was at HEI over 7 yrs ago..... it's one of those "individual results may vary...."
Phyl
-
Thanks, everyone. The House patients/headaches thing is something I've seen tossed around the forums here and there... My suspicion was/is that there's little behind it, but asking questions from a point of skepticism can be good sometimes. :)
-
My suspicion was/is that there's little behind it, but asking questions from a point of skepticism can be good sometimes. :)
Agreed. I love playing devil's advocate on the Forum - gets people thinking . . .
Lots of things shouldn't be taken at face value.
Jan >:D
-
Just came across your post.
I had a large tumor and was treated by Drs. Barker & McKenna AT MGH in Boston. I had the best care a person could have at MGH with those two. With a 5cm X 5cm tumor, my case was not an 'in-and-out-of-the-hospital-in-2-3-days' situation either. I had two surgeries for a shunt and the tumor resection (debulking) one month later. Between the two surgeries I was in the hospital close to five weeks altogether. I came through the ordeal fabulously however. MGH gets my vote!
Please contact me for further detailed information if you need to.
Paul
-
I had my AN (Translab approach) removed at House in LA by Dr. William Slattery and a team of others. I felt like I was in the best hands. My tumor had cut off my hearing and balance nerves so I already had SSD going in. The tumor was also on my facial nerve so there was the chance of losing that. They were able to scrape it off the facial nerve and I have no paralysis at all.
There are probably other good Dr.s out there that have been trained at House. But not all the people involved in your surgery (if you go to a facility other than House) will have the expertise of House. Look at the numbers. House has done more AN's than anyone as well as the research.
Good luck
-
You stated that your surgery would require a retrosigmoid approach.
Come to think of it, the last time I met with Dr. McKenna, he told me I had the same approach with my surgery. I never knew that until last year and my surgery was in '05.
-
I too have had the Retro approach and have constant headaches I went with this to preserve my hearing but did not do my research with other options and doctors. I believe they say the headaches are from the dust from the drill if the doctors to not take precautionary measures with gel foams to absorb it that is when problems arise... So far it sounds like you have done your research and definitely I am partial to HEI and I did not even go there just by their track numbers is enough for me and Dr. Friedman reviewed my reports after surgery was done by another team in the NY area and I was very impressed with that. I have heard great things about Dr. Sisti Columbia and Dr. Golfino at NYU...but with the small piece I have left behind if it ever grows (praying it does not) I think I would get the courage to fly to HEI..Good luck with whatever decision you make just research and choose a GREAT team.
Best Wishes,
-
I had a translab for 3.7 cm AN at House 10-09 and travelled from Wyoming and would do nothing different. My outcome, like many has been excellent, no headaches, balance good, no facial problems. Do the homework, and go with your heart and gut. Best wishes.
Susie
-
Greetings,
Am 3 weeks post-surgery and am doing great. I live in Grand Rapids, Michigan, which is fairly close to you. My ENT surgeon, DR. Robert Daniels, is a phenomenal surgeon. He has 20+ years experience. He operates with neurosurgeon, Dr. Bryan Figeroa. Doc Figeroa is younger, but is also excellent. He was recruited to come to West Michigan because he is so dang good! Dr. Henry Arts at the U.of Michigan is also excellent if Eastern Michigan works better for you. Dr. Arts did my second opinion for me and was a wonderful resource. He has many, many years of experience. I'd say good luck but I don't believe in luck. I will say God bless you, however! Hang in there!
Peace,
Diane
-
I suggest Capt Deb go to Dr. Ducic at Georgetown. I've been through the Botox/Xeomin, Cluster headache treatment and after Dr. Ducic and Dr. Maureen Moriarity, I am happily doing much better.
In good health to Capt Deb.
Mei Mei