55yr old female - 2.4cm AN - freaking out

[leapyrtwins]

I too have to respectfully question the claim of 3 AN surgeries per day.  Are you sure that isn't per week?

My AN was considered medium size and it took my team of doctors (neurosurgeon and neurotologist) 7 1/2 hours to remove it.  Even if we're talking 3 4-hour surgeries per day that would be 12 hours out of 24 spent performing surgery 

AN surgery is very slow, close, tedious work done through a microscope - which is why lots of docs operate as a team; they like to take breaks and relieve eye strain, etc. 

Lori and I are a lot alike - I prefer undivided attention when it comes to brain surgery, also.

Jan

[ladida]

Hello to All,

I meant that House Ear Institute does an average of 3 per day.

I can vouch for that...we were all in the same area....there are 5 Dr's on staff I believe.

I  twisted my own words.

My surgery was  7 hours long and expected to be 3 - 4. 

In my case he saw me at 6 am and had a surgery after mine and then was leaving for Japan to train others/

He is not easy to get,

Best to get a date if that is where you want to go once you have him read your MRI.

My info was that the younger you are the less they want to radiation.

I was told once they do that if you really need it removed later on they have to cut back beyond the scar tissue that  forms and that leaves you with more facial damage.

For me that was a deciding factor.

I have no facial damage at all.

I do understand each of you have to make a decision you are comfortable with and mine was to go with the most experienced which was House Ear Institute.

Dr Brackman was the only physician I would take because we had spoken on the phone at length and I felt very relaxed by the time I arrived.

I think Blue Cross is Well Point by the way in California.

Hope I have offered some support.

Good Luck to all once again.









 

[wcrimi]

Anna,

I sent you a couple of private messages about my experience with Dr. Post in response to your inquiry.  Sorry I didn't get back to you sooner, but I haven't been checking in here as often.  

For everyone else.

I had retro with Dr Post.  11 months ago.

I still have very useful hearing (I'd estimate 85%-90%). The loss is not even noticeable except when I use headphones or the telephone.

I have no facial nerve problems.

I've had a few very mild headaches over the last year, but I'm not even sure they are surgery related because I had a few colds and sinus problems this year. In any event, they are a non factor they've been so mild and infrequent .  We discussed headaches prior to surgery and he told me about bone dust causing irritation. He said he developed a technique to eliminate that.  

He cut a hole in my head "about the size of a half dollar".  There is a titanium mesh and acrylic plate in place of the skull.  There was no fat harvesting surgery etc...

My only problems have been dizziness, balance, wonky head, waviness in my head etc... that is slowly diminishing with time (I'm 11 months post op now).  In fact, in the last 4-6 weeks, I have been experiencing glimpses of normalcy. There are days when I stand and feel 100% normal and when I walk I feel well over 90%.  Only when I run, go and up and down stairs, and when I
I'm tired do I really notice a problem.  

All in all I wold say I am extremely lucky and that my experience with Dr. Post was very good.


Wayne


















 

[annac]

Wayne,

I did get your messages and I want to thank you for sharing your experience with Dr. Post. I"m happy you are progressing and I wish you the best!

In the last 2 weeks I've had consultations with a few other doctors and it seems Dr. Post and Dr. Bederson (both at Mt Sinai) are the only ones recommending the retrosigmoid approach for me. I've found out they offer this approach because it is their speciality and what they do best. This approach was attractive to me because it is the only option of preserving any hearing, unfortunately my hearing is not very good (can't use phone on AN side).  They both said the would "try" to save any hearing but chances were very slim and their main concern was to preserve my facial nerve.

I agree Dr. Post comes off very knowledgeable and very confident and I was very close in choosing him but I think realistically & sadly I'm going to have to go with the translab approach. I'm trying to come to terms that what ever hearing I have now will be gone but my chances of having NO facial nerve damage is very high (95%) and was told there are less complications and in the end and that is the most important thing to me.

I did meet with Dr. Golfinos yesterday and I think he is going to be the neurosurgeon I'll be using. He works with Dr. Roland and I really liked him as well.

Having the operation in NYC and close to home is also a comfort.

I just have to get out of this blue funk about losing my hearing.

[lori67]

It's perfectly normal to feel sad over the loss of part of yourself.

I had perfect hearing in my AN ear the day I went into the OR, and no hearing at all when I came out.  It was a sacrifice I was willing to make in an effort to save my facial nerve.  While I had a difficult time adjusting to the sudden loss of hearing, I have adjusted and manage just fine.  I have a BAHA also, which I love, but I honestly have to say I have adjusted well enough that I could live without it if I had to.

If the hearing you have at this point is not very useful, I would opt for saving the facial nerve if I were you.  I know it's a tough call.

Good luck!
Lori

[annac]

Thanks Lori for your support. I've read a lot of posts regarding hearing aid options here on the forum and it's made me feel much better.

[lori67]

It's got a few benefits - nice and quiet when you sleep on your good ear, easier to block out unwanted noises (kids, spouses, neighbors, etc), and you have an excuse for "ignoring" people.   

Lori

[wcrimi]

Anna,

I met with Dr. Galfinos and liked him a lot also. For me, it was practically a coin flip between him and Post because I knew I was going to have retro. Everything I've heard about him has been positive so I think you will be great hands.  I understand your choice perfectly.  I also understand how you feel about SSD, but there are options like Baha that you can look into after you get past this surgery. You'll be in my prayers.

Wayne

[leapyrtwins]

I meant that House Ear Institute does an average of 3 per day.

Thanks for the clarification - this makes much more sense.

Anna -

Drs. Roland and Golfinos have very good reputations.  IMO, you can't go wrong with them.

Feeling blue about losing your hearing is common.  I felt that way myself.  A BAHA solved that issue for me.  It's not for everyone, but I highly recommend that you at least try the demo post op (once your head has healed).  

Jan

Hijack alert - Nancy Mc, LOVE the new profile pic 

[wendysig]

Anna,

Although I'm glad you've reached your decision regarding treatment, I completely understand your sadness at the thought of losing your hearing in your AN ear.   Even though it is minimal now, it is there to some degree.  I know that I, and many others, felt very sad at the idea and/or realization that we would be SSD.  As Jan and Lori pointed out, it does have some benefits -- my husband's snoring used to wake me up almost every night and now I rarely hear him and he snores VERY loudly.  It does also alllow you to ignore someone and pretend you just didn't hear them if you want to.  As Jan and Lori also pointed out, BAHA offers a great alternative to being SSD.  I've had mine since April and love it.

Best wishes,
Wendy