First visit to the Neurosurgeon

[Mel]

Hello everyone, 
Wednesday I go to the Neurosurgeon, have had some pretty bad dreams and anxiety.  Just hoping that I ask all the right questions and of course get honest answers.
I have a friend who is a doctor and she is going to go with me.

I will at least know how large and just where this thing is.  The sounds in my rt ear seem to be getting worse and in the past couple of weeks have had alot of funny things going on in my head.  You may think that I am crazy but last week a sneeze which seemed to come from my brain woke me from a dead sleep and then as I lay there trying to get back to sleep it happened again.  Also, I was talking to one of the men at work and I felt as though I was going to fall over, had to catch myself, this has happened before on a couple of occasions but at that time I did not know about the AN and blew it off.   

I still have not said anything about this to my Mother or my 3 sons.  I am really having a problem as to how to tell my Mother.  Being the season I think that I will keep this to myself for a while.

Thanks for listening.

Mel

[rebarman]

I am a newb and do not have anywhere near the information that others on this site have, but I have found each and everyone of them to be as helpful as they can with information and answers. Just reading through some of their posts has helped me with the "fear and anxiety" side of the equation. I only have 30% hearing on my left side, and many times the sounds I do hear seem as though they are coming from a tunnel somewhere inside my head.

I wasn't sure how to tell my family about my AN either when I was first diagnosed. I usually use humor to diffuse the situation, so, the first thing I did when telling my mom about my AN was a joke about it. Some thing to the effect that it is benign tumor, and benign is just a french word for friendly.

I understand the part about keeping it to yourself due to the season, but don't let that get you down, We all need to be able to talk about things, and if you need to vent, talk, cry, or just plain let loose, know that there are people here that have "been there, done that, and brought home a tee-shirt". Don't let depression overtake you. I am (as are others, I'm sure) always willing to lend a shoulder (or an ear   :D  ) if you need one.

Hope this helps.

Rebarman

 

[nancyann]

Hi Mel,

Make sure the neurosurgeon et al, have done many many acoustic neuromas.   Unfortunately, even with experience, alot will depend on how your facial nerve is.
My tumor lifted off the nerve easily, but the nerve was severely damaged (probly had it for years, ignored the signs/symptoms), so I was one of the unlucky ones who has the facial paralysis.
Take your time with your decision, as we all write: there are 3 choices: watch & wait, radiosurgery, microsurgery.

Best wishes on this wild journey

Nancy

[Sam Rush]

DO NOT GO TO A SURGEON WHO DOESN'T DO AT LEAST 40 OF THESE A YEAR !!!!!!!!!!!

[GOIN2LA]

Don't forget about the endoscopic choice!!

Take your time with your decision, as we all write: there are 3 choices: watch & wait, radiosurgery, microsurgery.

[Mel]

Good morning

Today is the day and I feel calm, head feels good except for the noise. 

Has anyone heard of Dr. Vitorrio Morreale?  ENT is Dr. Brammer.

Will update tonite.  Maybe I am getting nerveous.

Mel

[Obita]

Good luck Mel -

I remember the funny noises very well - I had all sorts of electrical sounds going through my head.......I am happy to say, they are all gone now - they left with the tumor.  I have constant tinnitus but have learned to live with it.

With any luck, you can avoid surgery.  I wish I could have zapped it.

I will be watching for the update.  Kathy

[Mel]

Well, what a horrible day!!!  The surgeon did not want to answer any questions, I asked him how many surgerys he had done and he said "ALOT", I asked him what was "ALOT" and he said "ALOT" he did not know the exact number.  I thought what is alot? 5-10-20-100?  The room we were in must have been 9 X 9(?) with a table that you lie on, 2 chairs and a counter with his computer on it. Small!!  He asked me to walk to the wall, I took 2 steps and my face was almost touching that wall, turned around and he asked me to walk on my toes and then heels back.  I shuffled back to my chair.  What could he tell from that!  He made me feel as though I was a bother to him and why was I taking up his time with this small thing that grows slowly and is benign, so what was my problem.  He said that there were only 3 issues here, hearing, balance and facial paralysis and he kind of made it clear that was it.  I asked him what the heavy feeling in my head could be caused from and he said that it was not from the AN.  This guy said he would recommend watching it and that it may not grow for ten years, he had asked me how old I was, 60-in good shape and take care of myself, well in ten years I would be 70 so if I had problems then it wouldn't be as bad to maybe have some paralysis in the face.  In my head I thought, what difference does it make if you are 30,40,50,60 or 70, no one wants paralysis and to insinuate that 70 is OLD and no one would care anyway, I shut down, felt so uncomfortable and just wanted out of there.  I do not cry very often but I felt like I wanted to cry and scream.  Then I thought, am I making all these things that I feel in my head up?  I know I am not 

Well, now I feel better, saw Dr. Brammer, ENT, and he took almost an hour with me explaining exactly where the AN is located and what it would involve, both surgically and with radiation. Some of the pros and cons of both, because of where it is located.  The AN is located in the canal pushing towards the inner ear (Oh, it is small I guess, compared to alot of you, 4 x 3 MM) He did say that he does not understand why I have not lost any hearing, but that is good.  Dr. brought in a skull(real one with top cut off) and showed me where things are in the ear canal.  He said that I must feel comfortable with my doctors and if I am not go to another.  Dr. Brammer did not seem upset when I mentioned going out of state, he said House of Ear is the best.  Of course, I know very expensive. He gave me another surgeons name but when I called for an appointment they are having a new computer system installed and have to call back on Monday.  I wonder how much these guys charge for these consultations.

My friend( Doctor Marty ) that went with me this morning was not very impressed with this NS.  I sure am glad she was there to witness my experience.

I do not want to give the impression that I want surgery, just some respect and that is not what I feel I received this morning.

That's it!!  Frustrated but will get over it.

Everyone, have a great nite

Mel

[Palace]

Mel,


We all agree here, you "must" like your doctor.  It isn't right not to tell you how many of those surgeries the doctor had done, etc.

All the people on this forum will take good care of you and you will get the best treatment for yourself.  My tumor is 22 mm and I didn't inquire about House but, read about it online.  I went with Stanford and so far, I'm happy. 

Don't go for less!  (my specialist consultation runs seven to eight hundred dollars)  I hope your insurance is good.

Keep us posted.......



Palace

[Derek]

My ENT / otolaryngologist 'lost' my MRI scans and at my penultimate consultation informed me that I needed surgery 'soon' and told me to cancel my order for my new car that I had waited nearly a year for. I did cancel it on his advice then when I saw him a couple of months later at the joint consultation with my neurosurgeon he then told me that there was 'no rush' for treatment and that it may well be 3 years or so before I needed to make an ultimate decision on treatment!

I wrote to the neuro' over a month ago asking if there was a possible correlation between the AN and a 'loose' bowel condition and I am still waiting for his response which is needed to post on another thread on this site.

Whilst I have no doubt that both of these highly qualified practitioners are very capable in their respectivre specialist fields, neither of them is 'user friendly' and gave me the impresseion that they were not fully interested in ME. My 'gut' feeling tells me that I have not got the essential 'feel good' factor and confidence to entrust them with carrying out invasive surgery within my skull.

I have since had a consultation with a neurosurgeon specialising in GK treatment and his approach was in total contrast to the neuro' / ENT team whereby he displayed empathy, understanding and posessed that all important ability to LISTEN to his patient. At the conclusion of the consultation I was instilled with confidence and there was no doubt whatsoever in my mind that this would be my future treatment choice if and when that time arrives.

Regards

Derek

[Kilroy1976]

I've said it before and I'll say it again... Part of every doctor's, especially surgeons', continuing education should be Bedside Manner. While it's most important that a surgeon have skill in their science, I feel that there is not nearly enough emphasis placed on comforting, educating and instilling trust in patients. It really needs to be driven home that there's more to an AN patient than a brain with some extra cells.

[Obita]

Hi Mel:

Just what you needed.  Anxiety on top of anxiety.......try not to stress, you will find (as lmurray put it) your prince charming doctor.  I am so glad to hear your AN is small, gives you time to find the right one.

My advice at this point would be to find a Otologist/Neurotologist to speak to.  The complex inner ear is their specialty.  You can find one at all teaching hospitals and usually at major medical centers. 

I cannot believe the doctor you saw actually said paralysis would not matter at 70.  We have a saying about this kind of doctor on this forum.........RUN AS FAST AS YOU CAN.  I am glad you ran.

Good luck Mel, Kathy

[Pembo]

Mel, I'm sorry about the crappy doctor! I was lucky enough to have 2 surgeons who are also great human beings. They were both very attentive, answered all of my questions, my ENT even called me at home a week before surgery just to see how I was doing.

Definitely find docs you feel comfortable with!!! I did not go to HEI. I had a good outcome. Best of luck to you and tell everyone you know what an a** that surgeon is. 

[Sam Rush]

As a doctor myself, I am shocked the way you are treated. AN surgery is very technical and must be done by an experienced team or not done at all.  A "lot" means at least 40/ yr.  At House they do several hundred and have a internal medicine specialist who is the world's expert and pre- and post op care of AN pts. His name is Dr. Steffan


Good Luck

[ppearl214]

As a doctor myself, I am shocked the way you are treated. AN surgery is very technical and must be done by an experienced team or not done at all.  A "lot" means at least 40/ yr.  At House they do several hundred and have a internal medicine specialist who is the world's expert and pre- and post op care of AN pts. His name is Dr. Steffan


Good Luck

Dr. Sam

I also have to chime in with Dr. Peter Black (world-renowned himself) at Brigham Woman's in Boston, as well as the AN team of Barker and McKenna at Mass General Hospital (as many here, such as Crazykat Paul and kbonner Katie, etc, can attest). All worthy names to note in AN microsurgeries.

Phyl