New Member from Ill

[Ellenmn]

I have just joined this board. Try to see what others have experienced.
Here is my story up to now. About 6 years ago I was having problems with balance and slight black out episodes. They put me through many test and decided I had benign positional vertigo. Then about 4 years ago it suddenly felt like I had something stuck in my right ear. I thought maybe it was ear wax build up so I made an appointment with an ENT. He said that there was no wax and sent me over to have a hearing test. This showed a significant hearing loss so an MRI was scheduled. The ENT called and said that I needed to see a specialist right away and recommended a couple of doctors that he said were good. When I first called to make the appointment they said there was a 3 month wait to get to see this doctor but have the MRI results sent over. They then called back and got me an appointment within a week. It turns out the person reading the MRI said it was cancer, but the Doctor (Martin Herman) told me it was an Acoustic Neuroma and that it was not cancer. He then told me that there were a few options. He also recommended that I see Dr. Patrick Sweeny to evaluate a radiation option rather than surgery. After a few meeting with both and some discussion we decided do try radiation. I don't remember the exact size of the AN but I know that it was under just under 2 cm.
Anyway the first attempt at the radiation had to be aborted because some how the pins that held the hallow in bent and none of the dots lined up. So we gave my head some time to heal and them time to get some new equipment. The second time everything went great. I was very happy everything seemed to be under control and very little problems. Still had some hearing loss and once in awhile would still have some dizziness. The yearly follow up MRI's also looked good. It was not gone but looked to be slowly shrinking.
About 4 months ago things started to change. I started to have facial spasms on my right side. When they first started I would only get them in the morning taking a shower and they didn't happen very often. I saw my regular doctor to rule out other medical conditions and he had me see a neurologist who said that the facial spasms were probably due to the AN. He gave me a few options and I decided to just keep an eye on it because I was due for my annual MRI in about 3 months. Well the results weren't good this time. The AN is growing again and is now just over 2 cm. The facial spasms are getting worse and the ears aches and headaches are now joining the list of symptoms.
The Neurologist said that I should have it out and suggested seeing my neurosurgeon again. I went back to see DR. Herman (neurosurgeon) and had a long phone conversation with Dr. Sweeny (Oncology-Radiation). The concenese is that I need to have surgery.
I meet with Dr. Dennis Moore (Otology-Neurotology) next Thursday. He and Doctor Herman will be doing the surgery. Once I have met with Dr. Moore we will then try and set a date for the surgery.

I have to say I am a bit nervous about the whole thing. How do I know if I the best doctors doing this?

Sorry for the long story.

[Omaschwannoma]

Hi,

I am 2+ year post surgery and after reading your question "How do I know if I have the best doctors?" I would ask your doctors how many surgeries they have performed on radiated acoustic neuromas.  The consensus here (the forum) on experienced surgeons should top somewhere around 500 to thousand patients.  I have heard some doctors saying surgery on radiated tissue tends to be more difficult as there is scar tissue build up.  Given this, I certainly would want doctors experienced with radiated acoustic neuromas, especially since the facial nerve seems to be involved now.

I am sorry you are here, but know we are here for support, to answere questions as best we know, to guide you down your path.  There are many skilled surgeons and surely you will be hearing from people on this forum who can recommend a doctor.  I, unfortunately, cannot as my neurotologist said from the beginning, "I would not feel confident to perform surgery on radiated tissue."  There are surgeons out there that do have the experience and confidence though so hope is not lost.  Perhaps your doctors are?! 

Stay in touch and let me know how your next meeting goes.

[TP]

Hi Ellenmn:

I had not discovered this website until only a month ago so I went into this whole thing with no information last May 2006. I had some Dr friends and they felt I needed surgery immediately as well as the Dr that was treating me. I took the advice of my pain specialist to see a group of neurosurgeons and the one he recommended was unavailable so I saw his partner, Dr. Gabriel. I liked him immediately and in my case I had to have my AN removed within the month due to complications. I asked him if this surgery was difficult but I never thought of asking him how many he has performed. So, looking back should I have asked him that question, I guess so. However, in my case I am happy everything turned out. I would believe in your state you have several excellent neurosurgeons to consider, I would get as much information as you can, ask questions and in my opinion go with your gut. 

[Jim Scott]

Hi, Ellen:

Don't apologize...we all have a 'long story'. 

I'm sorry your AN came back but this can happen with both surgery and/or radiation.  Neither treatment is 100% guaranteed, as you know.  The good news is that once the tumor is removed, your symptoms should subside.

You seem to have settled on a surgical team so all I can add is that you be sure they have the kind of experience necessary in operating on previously-radiated acoustic neuroma tumors.   I believe the surgeon's experience in removing AN tumors is key to a successful outcome.  Don't be shy...ask the doctors about their specific experience with removing AN tumors and what their success rate is.  'Success' being defined as a post-operative patient who does not suffer facial nerve damage and related complications following surgery.  This is your health and your future.  Don't allow passivity or timidity to get in your way.  The surgical team that operates on you will be paid their fees no matter what the outcome, whether its good or not-so-good.  Obviously, you want a good outcome to this very delicate surgery that is fraught with the potential for complications if not handled correctly.  That's why the doctor's experience in surgical AN removal should be extensive, not spotty.  Don't settle for less than the best.

I had the blessing of a caring and vastly experienced neurosurgeon (and his hand-picked team) with literally thousands of AN removals on his resume.  He suggested that I allow him to reduce the size of the tumor, then have the remainder radiated.  I did this and, as my signature states:  'so far, so good'.  My symptoms quickly disappeared following surgery.  The 26 FSR treatments I had were tedious but painless and on my last MRI (December '06) the remaining tumor showed signs of necrosis (cell death).  I feel great.  While this approach may not be feasible for you, I trust you'll have an equally good outcome following your surgery. 

Jim

[Desilu]

Hi Ellenmn,

Sorry to hear about your situation. I live about 30 miles out of Chicago but chose to go to House Ear Clinic in Los Angeles because I they gave me a higher percentage rate to save my hearing, and I retained 85% of it. They do AN surgeries all the time. If you send them your films they will give you a free phone consultation. It is well worth the postage!

I don't know where in Illinois that you live but the Illinois - West Chicago Local Support Group is going to meet at the Downers Grove Public Library on Sunday April 22, 2007 at 2 p.m. There are always pre and post op people there and also others who have had CK and Gamma Knife Radiosurgery. The speaker this month will be Dr. Robert Battista of the Ear Institute of Chicago. We would love to have you there! If you have any questions, please send me a personal email.  I wish you the best on your AN journey.  Ann

[Ellenmn]

Thank you for your input.
Ann I'm not really set on my doctors. The DR Martin Herman was part of the team that worked with Dr Sweeney that did the radiation and both seem like really good doctors. Dr Herman has a very pleasant personality but at the same time very honest about what’s going on. I have not met Dr. Moore yet.  When I met with Dr Herman last Thursday I really was hoping for different options but I understand what he's saying. I really sat there trying to gather my thoughts and didn't ask allot of the questions I should have. I'm more prepared this time and will ask allot of questions of Dr. Moore when I meet with him. If I'm not comfortable I will check out other options. The facial spasms and earaches are miserable but I can live with them long enough to make sure I'm choosing the best doctors.

As for the meeting in Downers Grove, I will think about it. I live about an hour north east of there. (Libertyville)

[Ellenmn]

Well I had my meeting with Dr Moore today. Sure was a surprise visit. I had a hearing test first which showed what I already knew hearing in the right ear is pretty well shot.
Then I met with Dr Moore and he looked through my record asked me several questions checked my eye reactions and check my balance. Then to told me of the risks in having surgery and the added risks of having surgery on a post GK AN. After all that I was ready with my questions but before I could say anything he told me he wasn't comfortable doing the surgery. He then got DR Herman on the phone and together they agreed that they recommended I see a different doctor to do the surgery.
He apologized but said that he wanted the best for my well being and because I was already showing facial nerve problems and the complications with a GK AN he didn't fell he was the best one to do the surgery. He and Dr Herman have done them but not on a Post GK AN.
Anyway I thanked him for his honesty and for him considering my well being above all else.
He gave me 2 names that he highly recommends and feels confident in their ability to do well by me. The doctors are Dr Wiet and Dr Leonetti. Now I have to decide which one I'm going to call

[Ellenmn]

I forgot to mention that they also gave me a copy of the MRI reports. It shows that the AN was 1.47 cm x 1.11 cm x 1.4 cm last year and this years it's 1.96 cm x 2.13 cm x 1.83 cm

[Omaschwannoma]

Ellenm,

Just a quick thought that someone wrote about awhile back.....take a tape recorder to your doctor meetings.  This way you will be able to play back at a later date without trying to remember all the information of that meeting. 

[Ellenmn]

Well let me start by saying the support group meeting in Downers Grove was very good. I would have like to stay around longer and talk to more people but my husband wanted to leave. I think that he's still trying to come to grips with everything. I am as well but we each handle it a little differently.

Anyway I saw Dr. Battista at the Ear Institute of Chicago on Tuesday. He confirmed what the other 5 doctors have told me, that surgery is my only smart choice. He was really nice and took all the time I needed to talk with me about the procedure, what to expect and answer any questions I had. Then he left me with the decision to decide if I wanted him to do the surgery or go and see other doctors. He gave me the name of the neurosurgeon that will be a part of the team should I decide to have the surgery done with him. That doctor’s name is Dr. Robert Kazan.

After discussing it with my husband and much thought I believe I am going to have Dr. Battista do the surgery. He is a very knowledgeable doctor and he makes me very comfortable. I know allot of people post that they went to the House Ears Clinic in LA but I have not got the time nor the funds to do something like that. I also thought of checking out a few other names that I was given but truthfully I'm really tired of going through all of the procedures over and over again, and I really feely that DR. Battista has the skills to do a good job.
I called and set the appointment with Dr. Kazan for May 11th and left a message for Dr. Battista on my decision. I will let you know when it gets scheduled.

[Desilu]

Hi Ellen,

It was really nice to meet you at the meeting. We had a really good turn out and sometimes we even have more people. Well, you have possibly made the most hardest decision of your life. Now kick back and chill out, the rest is up to your doctors. Please keep us posted on your progress and if there is anything I can do, just let me know.  Ann

[Yvette]

Hi Ellenmn, my research said that if your surgeon has performed less than 400 AN surgeries, he/she is still practicing. My doctors Link and Driscoll at the Mayo clinic in MN. are AN specialists, they let me question the hek out of em, and I felt in good hands. I'm 3 mos post translab, doing good. Best wishes, Yvette

[Ellenmn]

Well I met with the second doctor of the team today. A really nice person.
The date has been set for June 28th, with Dr. Robert Battista and Dr Robert Kazan. It will be preformed at Hinsdale Hospital.
Dr Battista has experience with both surgery and radiation therapy, Dr Kazan is the neurosurgeon and has been working the Battista and Wiet for many years. Dr Kazan has done over a 1000 AN surgeries himself. Dr Kazan told me today (because I mentioned the House Ears clinic) that he is going to be doing surgery on the niece of Dr. Brackmann (from House Ears clinic).
Any way I am very comfortable with the two doctors and they both feel good about the surgery. They will be doing the Translab because my hearing is gone almost completly anyway and this will give them the best chance to safe the facial nerve. Dr Kazan did tell me to talk to Dr. Battista when I see him on June 8th about the BAHA.

I do have a question for the women though. Do I need to look into getting a wig?

[Obita]

Hi Ellenmn:

Here is my doctored up translab scar.  My coworkers had a field day putting images on my head.

This was taken on the fourth day after surgery.  By one month, you couldn't even see it.  My surgeon is a crazy man with the shaver.  Many surgeons don't shave this much.  If you have long hair, your incision will be hidden under all of your remaining hair.

Congrats on making your decision.  In many ways, that is the hardest part of the whole AN thing.

Good luck to you and if you have questions or get anxious, write to me.  Kathy

[Omaschwannoma]

Hi Ellen,

Like Ann said, "...kick back and let the doctors do their job."  Glad you made a decision and I'm glad it's the "right" decision for you!  I grew up in LaGrange and when married, moved to Hinsdale.  Back when my husband and I lived in Hinsdale the hospital's reputation was impeccable and I have no doubt this has not changed.  All the best to you and I'll be watching for your post when you are considered a "postie".  As for the wig, this all depends on your need for one, but skull caps and scarves worked well for me.