Surgery scheduled!

[Natalie29]

Hi everyone,

I have been reading this forum the past couple of months, and found it very helpful. Thank you all for this. 
I wish I would have encountered it earlier.

As I posted once before, I was diagnosed with a an acuostic neuroma about 10 years ago, and had my first retrosigmoid surgery in my home country almost 8 years ago now.
Unfortunately only half the tumor was removed, and a residual of 0.6cm was left.
It was growing slowly the past years, and now is bigger than before the first surgery.
Despite my long and difficult recovery the first time, I decided it is time to take it out! (as I understand the risk for complications increase as the size of the AN increases)

I have a translabirinthine surgery scheduled for the end of February at Keck Medical Center of USC with Dr. Friedman and Dr. Giannotta. 
I will be flying 16 hours for the surgery, and hopefully if all goes well, will stay in LA about three weeks total.

I am starting to get very anxious on the one hand, and excited on the other to get it over with.
I feel very lucky being able to do the surgery this time at a high volume well known facility.

I would very appreciate if you could share some of your experiences with me,
What to expect after the translabirinthine approach?
I still have a pretty good hearing, so I am wondering how I would menage with no hearing on one side, does and how it affect your daily lives?
Those of you who had a  second surgery? was the recovery or anything else different in any sense? did you have the same awful dizziness the second time around?

Thank you for reading this!

All the Best,
Natalie

 

 

   
 

[Willbur]

Just had translab myself. You will get a few weeks of drunk feeling and hopefully the docs don't mess with your facial nerve like mine or it causes speech issues, problems smiling, and issues closing your eye.

[LindaG]

I had translab on 9/22/16 At Rush in Chicago. Surgeons were Dr. Wiet and Dr. Byrne. I am so pleased to have this behind me. My face is just about 100% back now. I still have some facial nerve pain so I continue to massage. I deal with tinnitus pretty well. I am back to biking several times a week. Still doing therapy exercises to continue to improve balance.  Of course I have Ssd but I just deal with it. 

[CHD63]

Hi Natalie .....

Just adding a quick note re my experience in a similar situation .....  Nine years ago next week (February 21, 2008) I had my first AN removal surgery, via retrosigmoid approach.  Although I was told it was completely removed, three years later, it had regrown.  Therefore, I had my second surgery in May, 2011 via translabyrinthine approach.

In my case, the second surgery was a piece of cake compared with the first time around.  My vestibular functioning was knocked out following the first surgery so I had major readjustments following that and months of vestibular rehab.  However, after the second surgery, there was only minor imbalance for a couple of days and no extreme dizziness ..... in fact, I was walking around downtown LA nine days after surgery with very little assistance from my husband's arm!  I flew home (across the entire US) 13 days after surgery with no issues, other than fatigue.

As for the SSD, because I knew in advance I would be deaf in my AN ear, I asked Dr. Friedman if he could/would put the abutment for my Oticon Medical Ponto (bone anchored hearing system) in at the same time.  He did, and I have been wearing my Ponto Pro processor an average of 11 hours a day ever since, with great results.

By the way, you are in excellent hands at USC with Friedman/Giannotta!   

Best wishes and many thoughts and prayers for a routine surgery and quick recovery.

Clarice

[Natalie29]

Thank you very much for your responses, and for sharing your experience!
I'm glad to hear you are doing well.

Dear Clarice, can you please give me some information about the Oticon Medical Ponto (bone anchored hearing system), How does it work? With whom can I consult about it?

Again, thank you so much!

All the best,
Natalie

[Willbur]

Hi Natalie .....

Just adding a quick note re my experience in a similar situation .....  Nine years ago next week (February 21, 2008) I had my first AN removal surgery, via retrosigmoid approach.  Although I was told it was completely removed, three years later, it had regrown.  Therefore, I had my second surgery in May, 2011 via translabyrinthine approach.

In my case, the second surgery was a piece of cake compared with the first time around.  My vestibular functioning was knocked out following the first surgery so I had major readjustments following that and months of vestibular rehab.  However, after the second surgery, there was only minor imbalance for a couple of days and no extreme dizziness ..... in fact, I was walking around downtown LA nine days after surgery with very little assistance from my husband's arm!  I flew home (across the entire US) 13 days after surgery with no issues, other than fatigue.

As for the SSD, because I knew in advance I would be deaf in my AN ear, I asked Dr. Friedman if he could/would put the abutment for my Oticon Medical Ponto (bone anchored hearing system) in at the same time.  He did, and I have been wearing my Ponto Pro processor an average of 11 hours a day ever since, with great results.

By the way, you are in excellent hands at USC with Friedman/Giannotta!   

Best wishes and many thoughts and prayers for a routine surgery and quick recovery.

Clarice

How is the BAHA does it sound natural?

[CHD63]

Hi Natalie and Willbur .....

Bone-anchored hearing systems use the bone in your skull to conduct the sound coming through the processor placed on your deaf side to the intact cochlea of your hearing ear.  This enables the person wearing it, to hear sounds coming from the deaf side.  It does not give directionality, although in a quiet environment and if I really concentrate, I can sometimes distinguish whether a specific/isolated sound is coming from the processor.

See:  http://www.oticonmedical.com/Medical/YourTreatment/About%20bone%20conduction/How%20does%20it%20work.aspx for more information on how it works.

There are two companies that make these:  Oticon Medical and Cochlear.  Although essentially the same in how they are made/work, there are differences in sizes, features, and sound qualities.  I would strongly urge anyone exploring this option, to do demos of both (using a headband) before deciding.

I chose the Oticon Medical because of Oticon's long history in making air-conducted/traditional hearing aids and for me, the sound quality was more natural.  To answer your question, Willbur, neither brand can totally duplicate natural sound because the cochlea of a normally working ear consists of hundreds of receptors.  However, if I plug my good ear, the sound from the processor sounds like a really good sound system.

As to whom to consult ..... contact one of the companies directly and ask who in your area works with them.  (There is a place on the Oticon Medical website to do this, as well.) Keep in mind that an experienced ENT is the best one to implant the abutment and can also be done after your AN surgery, as an outpatient procedure under local.  It should also be said that the sooner after becoming deaf in one ear you start to use it, the faster/easier your brain will adjust to listening/processing the incoming sounds.

Also, since this is considered a prosthetic, insurance companies are required to cover at least some of the cost.  (Mine covered it 100%.)  Traditional or trans ear hearing aids are considered cosmetic and are frequently not covered, which makes no sense in our case, but it is what it is.   

I hope all of that helps.  Let me know if you have other questions or PM me if you would like to talk privately.

Clarice

[Natalie29]

Hi Natalie and Willbur .....

Bone-anchored hearing systems use the bone in your skull to conduct the sound coming through the processor placed on your deaf side to the intact cochlea of your hearing ear.  This enables the person wearing it, to hear sounds coming from the deaf side.  It does not give directionality, although in a quiet environment and if I really concentrate, I can sometimes distinguish whether a specific/isolated sound is coming from the processor.

See:  http://www.oticonmedical.com/Medical/YourTreatment/About%20bone%20conduction/How%20does%20it%20work.aspx for more information on how it works.

There are two companies that make these:  Oticon Medical and Cochlear.  Although essentially the same in how they are made/work, there are differences in sizes, features, and sound qualities.  I would strongly urge anyone exploring this option, to do demos of both (using a headband) before deciding.

I chose the Oticon Medical because of Oticon's long history in making air-conducted/traditional hearing aids and for me, the sound quality was more natural.  To answer your question, Willbur, neither brand can totally duplicate natural sound because the cochlea of a normally working ear consists of hundreds of receptors.  However, if I plug my good ear, the sound from the processor sounds like a really good sound system.

As to whom to consult ..... contact one of the companies directly and ask who in your area works with them.  (There is a place on the Oticon Medical website to do this, as well.) Keep in mind that an experienced ENT is the best one to implant the abutment and can also be done after your AN surgery, as an outpatient procedure under local.  It should also be said that the sooner after becoming deaf in one ear you start to use it, the faster/easier your brain will adjust to listening/processing the incoming sounds.

Also, since this is considered a prosthetic, insurance companies are required to cover at least some of the cost.  (Mine covered it 100%.)  Traditional or trans ear hearing aids are considered cosmetic and are frequently not covered, which makes no sense in our case, but it is what it is.   

I hope all of that helps.  Let me know if you have other questions or PM me if you would like to talk privately.

Clarice

Dear Clarice,

Thank you so much for the detailed response!

I'll definitely look into the bone-anchored hearing systems.
I'm pretty scared of the approaching surgery, and don't know how I'll cope with not hearing on one side (surprisingly to all, my hearing now is relatively OK). Knowing that options are available make me feel better.

Again, thank you!
Natalie