Author Topic: Recently Diagnosed!  (Read 6210 times)

vsfunkhouser

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Recently Diagnosed!
« on: June 21, 2011, 07:41:03 am »
Hi, My name is Victora and I am 55 years old... in good health and was recently diagnosed with an 1.7 cm Acoustic Neuroma. 

About 6 months ago I noticed reduced hearing in my left ear... I went to my GP and he said I had an ear infection.  I was treated multiple times for ear infection and fluid in the ear which he thought might be allergy related.  He finally recommended that I see an Audioligst and an ENT.  The Audiologist said that I had Asymetric Hearing loss which was most times caused from a virus or a tumor since I had not experienced any "events" which might have caused it.  I also discovered that the noise I was hearing in my left ear was not computer noise at work and locust at home... duh!  The ENT asked me several questions regarding my symptoms and scheduled me for an MRI.  I then was referred to a Neurotologist who deals more specifically with Acoustic Neuromas.  He is primarily a surgeon and explained his approach to my situation... indicated that he felt because of the placement of my tumor that he would recommend the trans-labrinthe approach.  He indicated if they did the Sub-occipital they would be unable remove the entire tumor.  Although he was willing to set me up to talk to someone about Radiotherapy that was not his recommendation.  He mentioned that if you try the radiation and then end up having to have surgery the outcome is not as successful. And quite frankly... I just want this silly little thing out of my head!  I have read and read and read in regard to treatment and I believe he is giving me the best advise but this whole thing is overwelming... my brain is on overloaded and seems to be consumed with the tumor, the procedure, etc.   :o

One of the silliest questions that I have is what about my hair????  It is relatively short now and I am not sure to just get it cut shorter or try to leave what ever I have to cover up where they remove hair?  Can anyone tell me how much hair they remove for the trans-lab surgery.

How long before you feel like yourself again?? Weeks, Months?

I would love to hear from anyone who has information about this surgery.

I know that the Lord will guide me through the days to come... but I still find myself fearing the surgery.

Prayers of thanfulness for those of you willing to share your experience and for those of you, like myself, who are facing their treatment!  Victoria

ColaBurns

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Re: Recently Diagnosed!
« Reply #1 on: June 21, 2011, 07:58:37 am »
Hi Victoria, I'm not able to be much help regarding the surgery but what I can tell you is that you came to the right place. I'm 29 and a mother to 2 young kids so the last thing I expected was to hear I had a brain tumor however this forum has been a blessing and I know you will find all that you need on this forum. Good luck with the surgery and please keep us posted.

Cola
Diagnosed June 25th, 2010
Acoustic Neuroma: 4mm right side
Doctor: Dr. Fucci in Chandler, AZ
I now belong to the Watch and Wait Brigade!

Debbi

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Re: Recently Diagnosed!
« Reply #2 on: June 21, 2011, 08:25:39 am »
Hi Victoria,

I was 52 when I was first diagnosed with a tumor roughly the same size as yours.  I consulted several surgeons and a radiologist, all of whom said trans-lab was the best solution for me. 

And, no, your question about hair isn't silly at all!  It was one of my first questions.  My surgeon only shaved a very small (less than an inch) patch of hair behind my ear, so it wasn't even very noticeable after the first few weeks.  Best thing is to ask your surgeon about this.  Most of the people I know who've had trans-lab have a similar incision to mine, which is very close to the back of the ear.  Some of the other approaches seem to have more dramatic incisions, but that may be a function of the surgeon's preference.

Recovery, as you'll hear from others here, is a very individual process.  Some people bounce back very quickly while for others it takes longer.  I had a post surgical infection several weeks after the initial surgery, which slowed down my recovery considerably.  Without that, I think I would have been back to work within 4 weeks.  As it was, I was doing part time work on the phone after about 2 weeks.  One of the big unknowns is fatigue.  It was pretty shocking to me when I needed to take one or more naps every day for the first month or so! :P

Did the surgeon discuss hearing loss with you?  Usually, translab results in complete deafness in the affected ear which can be quite an adjustment if you have any sort of functional hearing right now.  I waited for almost 3 years before deciding that I really hated being single side deaf (ssd).  So, last year I got a bone-anchored hearing aid (baha) which I love.  This is also something you might discus with your surgeon.  Some people choose to have the implant for the baha done at the time of the initial surgery.  And, many people, like me, choose to wait.  Some people aren't much bothered by the ssd.

Sorry, I seem to have rambled a bit!  Please ask any questions you want - you'll find we are a very sharing bunch.  :)

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #3 on: June 21, 2011, 09:29:13 am »
Thank you so much for your rapid reply!  You are so right... when I went to the audioligist the last thing I expected was a brain tumor.

Yes... my surgeon explained the complete hearing loss.  My hearing has all ready been compromised to the extent that I can hear out of thr left ear but can not really comprehend.  He also explained that this approach would be the best way to preserve facial movement.  He indicated that there was approximately a 17% chance of some facial paralysis but felt that because of where the tumor lies on the nerves that there is a good chance that there will be no facial paralysis.   ;)

I am excited to have new friends that have experienced what I am about to... it is so confusing and you read so much information that it becomes confusing.  I feel that my doctor explained all of my options including the radialtherapy but felt that the trans-lab was my best option.  I haven't got another opinion but from everything that I have read, I think he is right!   

He did tell me about the ba-ha but told me that he felt that this surgery should come first.  He indicated that he does not like to do the surgeries simutaneously.  I believe that I agree with this approach also as there must be an adjustment period to the hearing loss and the post surgery side affects. 

You didn't ramble at all Debbi... I just seem to be drinking information right now!  My brain is consumed with this tumor and the what ifs and what for, if I woulda, coulda, shoulda.

I told my grandchildren last night... my 13 year old granddaughter could barely look at me... I think she was terrified.  The other three had questions... lots of questions!  But it was good therapy for me... my grandson asked if I was gonna have a hole in my head???  Then he said "will anything fall out nana?"  ;D   The littlest asked "who put that in there... can't they just suck it out of your ear?"  Lot's of hugs and kisses!  So healing...

Debbi & Cola... I appreciate hearing from both of you!!!  Victoria

moe

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Re: Recently Diagnosed!
« Reply #4 on: June 21, 2011, 10:58:36 am »
Victoria,
Welcome to the forum! Good info from Debbi :) Your little grandkid's responses were just too adorable. Their brains are so simple for them, and I love the responses. Makes sense to me! Your 13 year old granddaughter can be assured that it is a growth on the hearing and balance nerve, and you won't be able to hear out of that ear, and may have balance problems. Brain tumor is so scarey. (actually it is a skull based tumor requiring brain surgery :P )

I had the BAHA put in with my translab surgery, and I ended up "unscrewing" it because it kept getting infected, it interferred with my loudER tinnitus, and the device was malfunctioning. So i think it is a good idea to wait, and adjust to the surgery and recovery. I was so concerned about the incision (which went around the ear~ hard to even tell I had brain surgery~) that I probably didn't pay enough attention to the BAHA  site. This past November, I DID get the  BAHA put back in. Since the titanium screw was still in the skull, they just had to rescrew it back in.

Everyone's recovery is different. Unfortunately, mine was a large tumor which had encapsulated the facial nerve, but I have had surgeries to correct that. NOT the norm, so don 't let my case scare you. I was my doctor's "favorite worst case." 
Took me about 6-8 weeks to recuperate, because I lost so much blood (which is also NOT the norm) and took a while to get my strength back. I really did not have any balance problems post op because the other side had completely compensated!

Trans lab approach also has little side effect of headache which is good.
So any other questions, we are here for you. No question is too silly  :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #5 on: June 21, 2011, 12:37:59 pm »
Maureen,

Thank you for adding to my library of information.  I just don't think you can know too much! 

My husband didn't want me to tell the kids it was a tumor but I thought that they needed to know - I was afraid they would overhear a conversation and feel like we weren't telling them something and that would concern them more.  I think it bothered our 13 year old because she understands a little more about the risks of surgery and that is scary for anyone!  But we need to laugh about it and come to terms because we can't change what it is... only how we deal with it!  We have a close relationship and excluding them would only cause more concern!  ;)

I so appreciate the support of this forum... when you're diagnosed you fell pretty much alone and so overwhelmed.  My husband called me on the way home from my ENT visit and asked how it went or if they knew why I couldn't hear... I said "they believe it is a tumor"!  He became quiet and then asked if they were sure?  I think he was a little more overwhelmed than I was only because I had been dealing with the hearing loss and a feeling of pressure in my ear ~ I knew something wasn't right! 

The more I have read, the more I am convinced that my doctor has guided me appropriately!

Thank you so much for your kindness and your positive response.  Victoria :)

Jim Scott

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Re: Recently Diagnosed!
« Reply #6 on: June 21, 2011, 03:55:59 pm »
Hi, Victoria ~

I didn't have the Translabyrinth surgery (I had Retrosigmoid debulking surgery) but I wanted to add my welcome.    Every AN patient has a slightly different experience but there are distinct similarities, too.  The average AN removal operation takes 8-10 hours (mine was just under 9 hours).  Many AN surgery patients experience nausea following the surgery but that usually passes within a few days.  I wasn't nauseous but that is apparently not the norm.  Balance is also a challenge for most but that is specific to the patient and how much your brain has compensated for losing balance input from the affected ear.  Again, imbalance can be dealt with using therapy - and time.  Post-op fatigue is almost a constant with AN surgery patients.  It is severe immediately following the surgery and takes time to subside.  Some have it for many months.  Mine dissipated quickly but I don't have the stamina I once had.  However, that could be attributed to my age (I'm a healthy 68).  As Debbi stated, these days they only shave a small strip of hair for the incision.  I have a relatively short mens haircut and the shaved portion was covered with new hair growth within a few weeks.  Within a month, it was no longer visible and my barber was able to cut my hair normally.  I doubt your ladies 'short' haircut is anywhere as short as mine and so, the shaved spot should be easy to cover and soon cease to be visible at all, even by you. 

A few caveats; although your balance can be improved with some work on your part, it will never be 100% of what it was prior to being affected by the AN.  I consider my balance about 80% of what it once was.  There is a small chance that you could experience some degree of facial immobility following the surgery (I did not).  That generally improves and again, with some therapy, it can be vanquished.  If not, there are minor correctional surgeries available to help remedy whatever facial deficit you might encounter, post-op.  I was SSD going into the surgery (the unfortunate result of procrastination and denial ) so that was never an issue for me to consider.  I had adapted quite well to the unilateral deafness and have not pursued the option of a BAHA, although that remains a fallback plan should my SSD become too onerous.  Being retired makes it easier to cope. Finally, I want to emphasize that  AN removal is a very demanding surgery.  It is not something you 'get through', recover and move on as if it never happened.  Even with the best outcomes, as I experienced, a few 'reminders' are still part of my life.  Fortunately, they are minor and invisible to others.  I hope you have a similar outcome to your surgery but as with all such operations, there are no absolute guarantees.  Your doctor seems to be on the right track and your trust in him is crucial.  Others can give you more information, I'm sure, but I wanted to chime in as best I could in an effort to help you figure this thing out.  I trust your husband realizes that you have a benign (non-cancerous) tumor that is operable. Following my AN diagnosis,  I had to explain that to some folks who, when they heard the words 'brain tumor', got sad faces and looked at me with pity, assuming I was a goner.  Hardly. 

I think you'll do well, Victoria and of course, as your new friends, we're here to advise, inform and, most of all, support you in whatever way we can. 

Jim   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #7 on: June 21, 2011, 04:12:00 pm »
Jim,

Thanks for your imput... as I stated before, I do not think you can get too much information.

I know it is a serious operation but I am trying so hard to stay light hearted and positive.  I must admit that is difficult sometimes... I am terrified of all of the possibilites - believe it or not I think being deaf in that ear is the least of my concerns as I do not hear well out of the affected ear. 

It is so good to hear from those of you who have had experience with the procedure.  The doctor's can inform us but they do not really know how it feels to hear the diagnosis and then experience the side effects.  Those of you who have shared with me "know".

My husband understands that the tumor is benign but he is concerned abourt the deafness and the surgery in general.  Right now he seems to be hovering... and as much as I know it is because he cares, I feel like I can't breath without hearing "what's wrong" ... "are you ok"?  I know it is an adjustment for the entire family.

I do not like the waiting... I have pre-op testing on July 1st and am hoping they schedule the surgery at that time. 

The only symptoms I am experiencing currently is the hearing loss, a feeling of pressure or something in my ear (hello... there is something in my ear)  :o and the tinnitus.  My doctor tells me that it is not likely the tinnitus will go away... I am hoping he is wrong.  But... one of the others mentioned that you get use to it.

I so appreciate your input... I will look forward to chatting with you again.

Blessings, Victoria

Debbi

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Re: Recently Diagnosed!
« Reply #8 on: June 22, 2011, 12:50:30 pm »
Hi again,

I see you've heard from some of my favorite Forumites (Hi Jim and Moe!) and they have offered their usual stellar advice.  One thing you might want to do is ask your surgeon how long his surgeries typically run for tumors of your size.  My surgeons told me 4 to 6 hours and came in right under 6 hours (tumor was 2.4 cm).  I actually know quite a few people who's surgeries were well under 6 hours, but some of that depends on size of tumor, experience of surgical team, and "stickiness" of the tumor.  The good news is, you'll be sleeping through the entire thing! 

Your husband sounds a bit like mine was in the early days after diagnosis.  I still say that this was much harder on him than it was on me.  I think it is difficult to see someone you love dealing with something like this and not be able to do a darned thing. Hence the hovering.  I definitely know that he had the worst of it on the day I had surgery.  I was blissfully knocked out, while he was pacing the halls of the hospital, looking at his watch every 30 seconds.

I agree with you about the waiting.  The hardest period for me was the time between when I was diagnosed and when I finally went into the hospital.  It felt at times like it was taking FOREVER! 

You sound like you've got a great attitude, and a great support system, Victoria.  That is going to help SO much!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

skipg

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Re: Recently Diagnosed!
« Reply #9 on: June 22, 2011, 01:33:46 pm »
Hi Victoria,
Like you I am recently diagnosed and elected to watch and wait. I have asked God, why me and why now, but I know it is not for me to question but to allow Him to work through me. It is very difficult but as you know knowledge is the beginning of wisdom. I believe with the knowledge we get from this forum and our Dr's, God will give us the wisdom to make the right choice. I would suggest to do your homework, as everyone has suggested, then pray upon your final choice. I believe that God will give you that perfect peace in your decision. I have been overwhelmed with the information and choices available. Going to the symposium in Cincy was a tremendous plus as the Dr's there agreed with the watch and wait choice for now. I want to move in my own direction and do something right away but I know I need to slow down and seek that divine guidance you mentioned. This forum has given me tremendous strength in making the right choice. I cannot give enough thanks to all the people that have shared their stories given their advice. Little did they know I was in the background spying on them. I had to go from denial to acceptance and they helped tremendously. I am confident we will get through this as so many before us have.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #10 on: June 22, 2011, 08:15:22 pm »
Debbi... it is so good to hear from those of you who know ~ I mean really know how scrambled you feel during these first few days.  One moment I feel encouraged and all positive and the next minute I am crying. Whew... it's exhausting!

Yes, my doctor suggested that it would be somewhere between 5 & 7 hours.  He is a neurotologist and he said he would be the one who would drill the hole through the mastoid and then after about 3-1/2 to 4 hours the neurosurgeon would take over and remove the tumor.  He explained that they would put a piece of manmade material over the membrane of my brain and then take fat from the left side my stomach and insert that in the opening.  He said the fat would re-generate the membrane.  At that point I asked him if he could slip over and take some fat out of the right side of my stomach and then on down to the hips.  I told him he could take as much as he wanted!!!! He said that probably would not happen!  :(

I know that this is difficult for my husband also.  They feel so helpless... he wants to help, he wants to be at the appointments even if it means sitting in the waiting room.  I am thankful to have a husband who is really, really there for me!  There are so many emotions and unfortunately you feel like you are face to face with mortality.  It scares the heck out of you thinking about all of the possibilities... now tell me "why" does our brain run to the worst case senerio? ???

I've always thought I was a fairly patient person but I swear we are having 48 hour days.  Normally I wouldn't want the days to go by quickly and now I am wishing it was July 1 and they were talking to me about scheduling the surgery.  Oh my... deep breath!

And Skip... it is in His hands ~ always, even when we THINK we are in the driver's seat He is there.  I have read until I can't read and I have to say that praying, researching, listening to my doctor and ending up at this forum has given me the peace to know that I have made the right decision in regard to treatment.  I believe my doctor is a good man and he is very knowledgable but I have to put my faith in him and believe that he will be successful.  The truth is that no matter who I would go to I wouldn't really know them... who they really are, where they like to go to dinner, if they like to vacation on the beach or in the snow.  I will continue to pray... and as you said we WILL get through this ~ these wonderful new friends have assured us of that!

Oh... Debbi ~ great job with the blog!  You have such a way with words!  Thank you for being such a "warrior" for the cause!  And the rest of you too... Jim, Moe & Cola ~ I have seen your names throughout the forum encouraging and supporting!  I would love to meet for coffee somewhere... oh that's right, you guys don't live in Northwest Ohio!  Love hearing from you!

New girl

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Re: Recently Diagnosed!
« Reply #11 on: June 23, 2011, 05:21:47 am »
Hi Victoria - I can definately relate to your struggle.  I am 37 and was diagnosed on June 1st 2011 9mmx14mmx9mm.  I had constant ringing in my right ear for several months.  I finally went to an ENT doc who said I should have an MRI which revealed my tumor.  I have since then seen a team of surgeons in MetroWest MA.  I am talking to a radiation doc today at Tufts.  I have an appt with another surgeon in mid July at Mass Eye and Ear.  I have mostly calm days and then some total freak out days.  I do feel exausted a lot dealing with my stress and my family's stress and also reading so much new info and then going out and talking to so many doctors.  Definately information overload!  Thankfully my work has allowed me to take time off and everyone has been very supportive.  I am definately leaning towards surgery even with the risks.  I think this forum has been a great resource for learning about peoples real life experiences.  Keep us posted!
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

CHD63

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Re: Recently Diagnosed!
« Reply #12 on: June 23, 2011, 05:52:30 am »
Hi Victoria .....

I'm a little late joining the welcoming committee (still resting up from the stimulating ANA symposium last week-end  :)) ...... but sincerely welcome you to this forum of new, caring and very supportive friends, who know exactly what you are going through.

You have already had excellent replies so I will not repeat.  If you have not already done so, send for the free informational material from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195  These materials contain wonderful up-to-date information and much reassurance.

Also, have your husband either register or lurk here on this forum and check out the Caregiver category.  Being the close family member or friend involved can be almost as terrifying as being the patient.  You, as the patient, are doing all of the reading of information, processing, and dealing with the emotional aspects.  Spouses, on the other hand, are standing somewhat helplessly by and heavily involved emotionally.

A little about my situation.  I was originally diagnosed in 2008 (see my signature below) and had retrosigmoid approach tumor removal shortly thereafter.  In a very unusual turn of events, my tumor grew back, and just 6 weeks ago I had the regrown tumor removed via translabyrinthine approach.  20% of my hearing was preserved with 100% speech discrimination (an important component) following the 2008 surgery so I had good success with a digital hearing aid.  I knew going in to the recent translab surgery I would now be SSD so I chose to have the Oticon Ponto Pro abutment implanted at the same time.  I am very glad I did.  For me, the thought of an additional surgical procedure later was not attractive.  I have had absolutely no difficulty with having both the translab surgery and the titanium abutment implant done at the same time.

Because of both procedures, a bit more of my hair was shaved than would normally be done for just the translab.  My advice would be to keep your hair the normal length you wear it, because most doctors simply lift your hair out of the way and shave only the minimum needed to have a clean field.  We even had someone on here awhile back, who had virtually no hair shaved.

You are in my thoughts and prayers as you walk through this maze of information and deal with the huge decision-making part of the whole thing.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #13 on: June 23, 2011, 06:49:42 am »
New Girl... as soon as the doctor suggested that this may be a tumor, I started researching ~ truth was between what my audioligist said and my first visit with the ENT I knew that they suspected a tumor just from what they told me about asymetrical hearing loss.  I didn't even realize that I had what they called "Tinnitus" - I thought I was hearing a computer noise at work and at home (we live in the woods) I thought it was locust... now how bright is that!  I learned that I had that  from my appointment with the Audioligist!  She asked me if I had ringing in my ears - I said "NO" because it's not really a ringing!  But now I know that I do have it and it seems more annoying! LOL

The neurotologist that is in the ENT group that I went to explained due to the size/location of my tumor he recommends the trans-lab approach.  He did discuss the radiotherapy but I had read a lot about that and just didn't think I wanted to go that route.  Partially because of my age.  Right now I am 55 and healthy and I am to understand that there is often times scar tissue following radiation which can cause complications in the event that you would need surgery in the future.  I know someone who have had it and are very happy but four years post surgery her tumor is still there... it has shrunk but it is still there.  And I just want it OUT! 

But I know that is a personal preference and all of us are different and have to be at peace with our decision. 

I know where you are coming from with the "freak out" days... and I too feel calm most other days, For the most part I feel fine, I have somewhat adjusted to the loss of hearing in my left ear - the feeling of fullness/pressure is somewhat bothersome but my biggest complaint is feeling so tired and I know that is just stress. 

I think this forum has been a huge blessing... all of the thoughtful, caring people who have shared their experiences seem to make this journey frightening! 

I'll be praying for you as you continue to research your treatment options...  and I will look forward to hearing how your appointments come out.  Blessings, Victoria

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #14 on: June 23, 2011, 07:10:12 am »
Clarice... I am glad to hear from you and you are so very right everyone on this forum has been so caring and supportive and it feels so wonderful to have people to go to who really know what your feeling. 

I appreciate the link... I had not sent for the information but will do so directly. 

Oh.... my husband will not get on the computer.  He just does not like technology unless it has something to do with a power tool!  He is struggling... I have been printing off the information for him to read and he has but it is like you said he feels helpless.  At church on Sunday when my Pastor (who also is my very dear friend) came up and hugged me, I began to cry and he seemed upset.  Later my Pastor talked to him and he is trying to be strong for me and when I cry he it is all he can do not to.  She told him it's OK to cry but that is just not in his nature.  I know that we are all fearful of what will take place.  But I have faith that all be well (doesn't necessarily remove all of the fear just makes it a little more barable). 

You certainly have had some bumpy roads to travel in the last three years.  My doctor explained that he did not want to do the retrosigmoid because he didn't feel that they could remove the entire tumor and it would be questionable that they could preserve any hearing with that approach either.  He was pretty adamant that the trans-lab was the best option for my situation.  He didn't talk to me about the Oticon Ponto Pro but did discuss the BaHa. He suggested waiting until after I had recovered from the AN surgery.  I would like to learn more about about the Oticon.  My next appointment with my doctor is July 1 - I would like to discuss it with him. 

I plan to leave it as it is, unfortunately, it is short!  My stylist told me that I might want to do something fun and funky!  She's young... you might of guessed by the terminology! ;D  At 55 I could co the fun... not so sure about the "funky"! 

I appreciate you sharing your journey and your prayers (never can get too many of those)!  I will look forward to chatting with you again soon! Victoria

 


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