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[LaMar]

Hello, mu name is LaMar and I am a 21yo female from South Carolina.  As of July I had a 3cm tumor, on the right side.  However, I recently had another MRI and they were unable to measure it as a circle so now they are telling me that it is a rectangular tumor that is 2cm x 1.5cm x 1.5cm.  Which would be bigger.  I was really surprised to see this because i thought that the tumor was slow growing.  Of course I was also told that they were doing an MRI to out-rule this before they could take the next step too.  (HA) I actually had no idea that i was experiencing any problems.  I am in the military and i was leaving the base and i am at to go to another one and i failed a hearing test.  I went to see an audiologist - who thought i was faking at first to get out of changing stations - and she ruled out any inner ear probelms so they decided to run a neuro hearing test that tracks how you hear and i failed all three times that she performed it.  Then she believed that I was faking.  How great of the military to trust you, huh?  Well, then she told me I had a tumor and the doctor told me that i didn't but that we would do the MRI to be sure.  I am scheduled for surgery on 5 Dec 05 at the medical university of Charleston.  The residing is Doctor Paul Lambert.  My surgery is being recorded and will be a class so to speak.  A few doctors from the military will go to watch and some of the students at the school.  I am trying really hard to be positive but it just seems that everyone is trying to hide the difficult things from me because of my age.  My husband is currently overseas and that is not helping either.  The military is promising that they will have him home in time, but so far nothing.  We did a packet that should have brought him home but his unit did not proceess it so i think we are going to go through the red cross.  I just hope it all works out.  I am scared about the surgery because I am just not sure what to expect.  My tumr has grown towards my brain instead of towards my brain stem so they think that it will be a harder surgery.  Well, I hvae to get to work, so i will chat more later.  Good luck to all of you!

[wind6]

Just wanted to say welcome to the boards. There are wonderful people here and lots of information. It doesn't sound like you being given much info or any choices about your method of treatment. I am not familiar with the military procedures when it comes to illness. Can you find out how experienced your doctors are with this type of surgery?

[LaMar]

Normally the military tries to use someone that they already have on staff to do the surgery, but there are actually no brain surgeons on payroll- go figure.  So the next step is to refer you to the closest civilian doctor to where you are and for me that is Doctor Paul Lambert at the Medical Univeristy of South Carolina in Charleston.  I have looked him up and he was very popular while at VA University and has done a lot for the field.  He is more of a teaching doctor I think, but becasue of that he has more money to invest in research.  He has published a lot of stuff and he has done 1000s of removals.  I would prefer to go to the House Clinic but the military wont pay for it.

[brandilewis]

I AM VERY NEW TO THIS SIGHT AND THIS CONDITION.  ONE OF MY VERY BEST FRIENDS HAS RECENTLY BEEN DIAGNOSED.  WE LIVE IN OKLAHOMA.  DOES ANYONE HAVE ANY PHYSICIAN SUGGESTIONS IN OKLAHOMA?  ALSO, IS THERE SOMEONE WHO HAS HAD THIS TYPE OF SURGERY WILLING TO SEND ME AN E-MAIL ADDRESS OR PHONE NUMBER SO THAT MY FRIEND COULD VISIT WITH YOU.  (CBRLEWIS@ITLNET.NET)  SHE IS VERY CONCERNED AND A LITTLE DISTRAUT.  SHE IS A HAIRDRESSER AND IS CONCERNED ABOUT THE EMOTIONS LINKED WITH HAVING TO SHAVE HER HEAD.  THANK YOU.  BRANDI

[wind6]

Brandie, The first thing you should tell her is that they do not shave your head. I have about a one and a half strip of hair shaved behind my ear. Its not even noticable unless I pull my hair up.
Can your friend come to this site and read the posts of others? This is where I found most of my info and my links to other reputable sites. The people here are really wonderful and as ready to help.

[okiesandy]

Sherri,

Sorry to break the news to you that in Oklahoma they do shave the head or at least nearly half of it. Why do you think I freaked out about my latest doctor? No big deal to him. Only shaves about 4 fingers above the ear and behind. i just got back from seeing a man that had it done a couple of weeks ago and he does not have any hair on one side. Remember when I ask my doctor how long before I go back to work and he said about 4 weeks. And when I ask how I would do that with out hair. I got that blank look again.

[cookiesecond]

Gosh Sandy,
I had the translab approach 8-2-05 and they only shaved a small strip behind my ear. You couldn't even tell and now my hair has grown back.I had my surgery in NC. I hope the best for your friend.
Take care,
Lynn

[okiesandy]

Rita with Dr. Brackmannn's office told me even Dr. Brackmann shaves a lttle more than some of the doctors. Doesn't want any infection.

 I am not saying every doctor in Oklahoma does it that way. I haven't been to them all. However, I may yet. I know there are some very good doctors in this state.  However, we have a low population base we do not attract a lot of the top doctors. There is no one that specializes in only AN's Also, we are rated at or near the bottom of the heap for medical care. I sold real estate for many years and that was one of the things that people who move here are shocked by. We have a lot of cancer here, higher than the national average and there are some very good options for that here. It just would not stand to reason that a world class AN specialist would be here. Of course I for one would welcome one at this time. There seems to be more and more AN's around here now. There are a couple of guys that may make it near the top around here if they don't move on to someplace else.

[LaMar]

Hey Sandy,

Did you use Dt. brackmann.  He called me a few days ago and he is looking into my case.  What are your comments on him?

[Joef]

He worked on me .. and is one of the top doctors in this field .. they dont need to take much hair off ... but that is the least of your worries, at the shorter it is , the easier it is to wash your head/hair after the op...

[kristin]

lamar..i went to dr brackmann too and he was wonderful. very patient and kind and even called my parents to reassure them! he called me a couple of times before surgery and was always super polite and very intelligent. then you think...this guy has to be a super millionaire! and he doesn't come off that way at all.

for the post about the hair...i thought i was only going to have a little bit of my head shaved when i went in, but they took a nice chuck! but i've got good news! (i just saved a bunch of money...just kidding) HAIR IS HAIR!! it grows back!! people kept asking me when i got back "i thought they were going to shave your head?" then i'd show them and they were shocked..you couldn't even tell, my hair covered the shaved part.

anyways....

kristin

[Mary]

Lamar,

If you have contacted the house then you are headed in the right direction.   Please don't let the service use you as a guinny pig.   When you're out of the service you still have to live with anything that happens.   You need to fight and get to the house.  I know there are doctors out there that can do the surgery,  but there are not any doctors that have done as many surgeries as the house.    The doctor that did my mothers surgery has done over 6000 acoustic neuromas.   They do between 200 to 300 a year.   They have mastered the surgery.   Doctor Brackmann and Doctor Hitselberger are the ones that developed the procedure to go behind the ear to remove the tumor.   Before they went thru the top of the head.   Do they have problems?   Of course.   They're human and not every situation is the same.   BUT because they have done so many, they know what to do when something comes up that's not expected.   There surgeries are half the time of any other neurosurgen.

All of this is known by many people.   The one thing I found out when I brought my mother here is.....ALL OF THE DOCTORS THAT ARE INVOLVED ARE VERY COMPASSIONATE TOWARDS THEIR PATIENTS AND FAMILYS.   THEY REALLY CARE AND YOU ARE NOT JUST ANOTHER TROPHY.   Your are very young and you need to go to the best to preserve you quality of life.

Mary

[okiesandy]

LaMar,

I have not had surgery. I was sche. 11/8/05 with Dr. Brackmann. My insurance said no way could I go out of network with out paying about 3/4 of the surgery costs myself. Also, if anything happened and I had to have any kind of extended treatment I was on my own also. That was pretty sobering to to me.

I have looked into Cyberknife and Gammaknife last week. Also, I have started again with my insurance company and want them to give me a dollar amount of what they will pay. I live in Oklahoma and I will not have surgery here. I know some have had very good outcomes here and some have not. I just got an email this morning from a man telling me of his outcome here and I just can't do it. I just have this intuition that tells me no. This is not the place to have it done. So far nothing about my AN experience has been normal from the first day I found out.

I have talked with Dr. Brackmann several times and I think he is just about as good as it gets. He has answered my questions and soothed my fears. He makes no promises. He is a very busy man and makes his conversations brief. However, when I have called his office I have been put right through unless he was out. He also consulted with the doctor I go to now about my Autoimmune Inner Ear Disease that was causing me to lose hearing in my only hearing ear. I was ready to go and believe me, I am a coward to the core. Now, against Dr. B's advice I am considering radiation.  I just call it plan B for the time being. I you can go to HEI by all means do it. Your chances would be greater there for a full recovery. Not every surgery is perfect, your chances of having a good outcome depends on skill.

Sandy

[LaMar]

Hey everyone.  Thank you for your comments on Dr. Brackmann.  I unfortunatley will not be able to use him.  The military will pay for my surgery but they will not pay to send me to LA for the surgery.  I was also told that the chances of the military even approving for a surgeyr out of my "network" is slim to nil.  Since they found a doctor that was skilled in the area and was close to here then that is who I have to use.  I feel comfortable with Dr. Lambert it just worries me a little that no one else on this site has used him.  I know that he has written alot about, is one of the top researches in advancing technology. that he teaches other students about acoustic neuroma and that he teaches them surgery.  I know that he has also performed alot of surgeries so I guess that I will be sticking with him.  I am scheduled for December 5 and I have post op on 28 Nov.  My husband comes home on 23 nov 05 and I could not be more excited.  We have had a lot of problems with his chain in Korea but thank to red cross we are working everything out.  Well, I have to get bakc to work.

[Rena]

LaMar - I'm very happy to hear that your husband is going to be home in time for your surgery.  I couldn't imagine facing my surgery without my husband!  I too am going to a surgeon who is not mentioned on this forum.  He is Dr. Jack Kartush with the Michigan Ear Institute.  He is the one who developed the device used to monitor the facial nerve during surgery.  He has performed over 1000 of these surgeries.  I'm very comfortable with him and am very confident in him.  I think that is what is important.  If Dr. Lambert has perfomed many of these surgeries and you are confident in him and are comfortable with him....then that's what you should do.  But if you feel uneasy about him, then I would fight to go elsewhere.  It is your brain after all!!  My surgery is scheduled for December 1st, so I'm just a few days ahead of you.  I will be thinking of you and praying for you.  Please keep us updated on how you are doing.  Good luck and God bless.  Rena