Acoustic Neuroma 1.0cm, 08-12-09

[bobchatt1]

Thanks for the note Rob.

It's comforting to know that there are others out there like us. I suspect that there are many people out there that have had successful AN surgeries.

I now proudly wear my BAHA sound processor (a game changer for me at work!). I am tumor free ... 2 years post op...my balance is good. Like you - I can't find a ringing cell phone if my life depended on it! ... and .... I have to do a 360 spin when someone calls my name! :) it's all good!

[rwolfhaus]

Thanks for the response! I have the Baha as well, but I'm really poor at wearing it! I seems... tiring the right word? You're giving me incentive to dust it off and give it another go! Best Regards!

[rwolfhaus]

Hi Bob! Just stumbled onto your video. We have remarkably similar stories. Would guess we are about the age. Had my acoustic neuroma surgery 4/09 @ Baylor College of Medicine in Houston. What struck me was the emotion in your voice for I know how exactly how you felt. Issues w/ SSD, family & work support, etc...it could of been me in your vid! Feel extremely lucky as well for it could of been worse...though I do dearly miss stereo music! & cannot find a ringing cell phone! Take Care! Rob

[wolfdale00]

Thanks for sharing your story. When you did an MRI, was it with contrast?

[bobchatt1]

@wolfdale00

My pleasure! I've had 2 MRI's now. Both of them (June '09 and Aug '11) used a Galadium contrasting agent. The good news is....is that my 2 year follow-up MRI is clean.

Bob

[mcproptart]

Dear Bob,

Thank you much for posting this video. I am in the deciding phase. Last year the AN was small to medium at 1.5cm. I go in tomorrow to get the MRI results for this year to see the rate of growth. Your video has illuminated for me some things that have been happening which I disregarded before, but now seem relevant to bring up to the doctor. Thanks again, and I am so glad for you that your recovery is going well! --j

[bobchatt1]

@mcproptart

You are very welcome! I am now almost 2 years post surgery....and am feeling great. I have also just started riding my bike again (had a bad blackout experience on my bike early on). I will also be seeing my doctor soon to review my 2 year post op MRI to make sure everything is OK.

Best wishes to you .. please keep me/us posted.

Bob

[bobchatt1]

I recommend you call HEC...and ask for a phone consultation with Dr. Brackman. The surgery is expensive... but hopefully you have good medical insurance. People come from all over the world to see the doctors at HEC. All of their procedures/operations are performed across the street at St Vincents Medical Center. Also, there are 3 surgical options available (that I'm aware of) ... 2 of which attempt to preserve remaining hearing. You need to talk to a doctor at HEC.

Good luck to you! Bob

[starbase947]

@bobchatt1

Thanks Bob,

you seem such a nice and cool person. your peace of mind is very relaxing.

live long and prosper!!

and of course, i wish this to anyone, be well and drive safely.

:-)

[starbase947]

watched this movie, all the way from Israel. i am 37, with 11x14x17 mm, on my right ear. seen all possible doctors and still does know what to do. beside partial hearing loss, i have nothing else. i can still hear on my right ear, and discriminate speech. but my main focus is to preserve the hearing. no matter what, i still want to preserve it. went to see HEC web site. i am wondering how much does it cost to take the surgery over there. how can i contact Dr. Brackkman?

[MidAdopt]

Thanks for posting your video..it is very inspiring. Can you tell me a little bit about your facial weakness post surgery? How long did it last? Did it come back slowly over time? My husband just had his 15mm AN surgery a couple of weeks ago. Post surgery everything looked good. A week later he experienced facial weakness. Were you graded on the Brackmann house post surgery and after your facial weakness occurance. Thanks

[bobchatt1]

Sure..... post surgery my facial nerve / functions ALL worked fine. When I phased out the steroid med for swelling / inflamation ... 1 week post surgy ... is when I experienced minor facial weakness. The right side of my face didn't work quite right (including loss of taste). Saw my doctor.s..they said ALL was normal and put me back on the steroid meds for a few more days. After 4-5 days all returned back to normal...and remains normal over a year later.

Bob

[duckft87]

what made you pick house ear clinic? i was just diagnosed on 9/15/10 with right intracanalicular acoustic neuroma 0.69 x 0.39 x 0.27 cm. i have contacted the mayo clinic for an appt.

your video was great, looks like your recovery went well.

[bobchatt1]

@duckft87 My ENT doctor (Dr Sheldon Klausner in Santa Monica, Ca) referred me to the House Ear Clinic (HEC) after testing and confirming single sided hearing loss .... and specifically Dr Brackman at HEC. I will be forever grateful to Dr Klausner for ordering the MRI and the referral to Dr. Brackman (and the HEC).

[convivialjen]

I do appreciate your video, I just found out today....am keeping up the brave face but am naturally terrified. Mine is 1.2cm. I certainly hope my outcome is as good as yours! Thanks again.

[bobchatt1]

@convivialjen -  You are welcome. This is why I posted my video ... to show that there are positive outcomes. Talk to you doctors and explore the options.

Best wishes to you ..... on your journey.

Bob

[nanlt124]

bob on 08/10/10 i suddenly lost my word recognition and most hearing on my r side i did not know why until i had an mri last week and found an AN 1.9x1.67 cm My ins ends on 09/30 with no prospect of new ins very soon and i have been unsure of what to do your comments have reassured me that surgery is the right choice i realize that we are all different but, you helped me with my fears and i thank you for sharing nancy  tampa general hosp tampa, fl probably 09/30

[bobchatt1]

@nanlt124 - you are right ... we are all different. And our solutions will be different. I experienced loss of speach descrimination (right side) just like you. That was an indicator to me to go see my ENT doctor (who ordered the MRI). I'm now deaf on my right side ... but have just received my BAHA sound processor .... and am now experiencing amazing hearing benefis! Best wishes to you.

[frankiegable]

mr chatterson thank you for posting this video i go for the exact type of surgery as you explained versus the other videos i have watched about acoustic neuroma.. they had me terrified but as i said they were alot bigger tumors i go this thursday 6/24/10 and i feel some relief now thank you very much ...i will be going to neuroscience institute of university hospital in cincinnati....i hope my success is as yours ...take care and im glad that you are better. sincerely frank garber

[bobchatt1]

Hey Frank,

I was where you are now....terrified. And my reason for posting my video .... to show that there are positive AN surgery outcomes (a LOT of them)!

I'm now ~9 mos post surgery and I continue to do well. Am now pursuing the BAHA hearing aid - so that I can hear sound on my right (deaf) side. Had the titanium implant installed on 5/13/10 ... and am now in the "osseointegration" process (bone/implant integration) ... then we attach the external sound processor.

Good luck to you!!

Bob

[bobchatt1]

@ba1coolkid .... good luck to you. The House Ear Clinic is the the absolute best place to go ... you're in good hands.

Bob

[C21Mirm]

Hi Bob,

I was wondering if you ever considered to have radiation instead of the surgery. I have a close member of the family who has a 1.2cm acoustic neuranoma. Luckily we live close by to the house of clinic in the south bay. Hearing preservation is still such an important factor for us, including all the other risks involve. We are very torn between the treatment. Any input from you would be greatly appreciated. Not an easy decision, nor an easy thing to go through. Thank you! Mirm

[bobchatt1]

Hi Mirm, ... No...it was NOT an easy decision. I needed a 2nd doctor consult because that was so difficult a decision... but....I had already lost 100% of my speech discrimination in my right ear. I briefly considered radiation ... but that seemed like a "control" technique ... I wanted a cure. And surgery was the cure I chose. If you have normal hearing in your affected ear ... there are 2 other surgical techniques that attempt to preserve remaining hearing ... but there were no guarantees.

[C21Mirm]

Hi Bob, I too would like to thank you for your video being so positive. You show that there is light at the end of the tunnel even if its really hard getting there. We are still researching between radiation vs surgery. Like I said hearing preservation is still very important. We've been told that the House Ear Clinic is the best, at least we are blessed to be in good hands. We'll keep you posted on our decision, and we'll stay positive. Good luck Frank, blessings!

Thank you! Mirm

[C21Mirm]

Hi Bob, I too would like to thank you for your video being so positive. You show that there is light at the end of the tunnel even if its really hard getting there. We are still researching between radiation vs surgery. Like I said hearing preservation is still very important. We've been told that the House Ear Clinic is the best, at least we are blessed to be in good hands. We'll keep you posted on our decision, and we'll stay positive. Good luck Frank, blessings!

Thank you! Mirm

[jimmyjames182]

Thanks for the encouraging post. So little positive content on the net, really appreciated.

[bobchatt1]

Your very welcome. You found what I found when I searched the Internet....very little positive information on AN tumors. It is all pretty scary stuff. But...there are good news stories out there ... mine was one of them. I hope yours will be too.

Bob

[jimmyjames182]

So difficult to find positive content on AN's - as someone who's just been diagnosed, thaks for going to the trouble of posting this.

[robmelnoahzane]

Thanks Bob.

You look great, and I am glad to see you have no facial paralysis such a short time after the surgery. Did you have any facial symptoms prior to the surgery, such as the inability to blink or purse your lips? I appreciate your post and the posts of others on this topic. Thanks.

Rob

[bobchatt1]

Thanks Rob.

No ... I did not experience any facial weakness (no symptoms) at all prior to surgery.....but it was my biggest post surgery fear. And ... 7 mos post surgery ... no facial weakness issues (feeling very fortunate).

My symptoms prior to surgery were single sided hearing loss (severe - right ear) and balance loss (50%). I'm now deaf in my right ear and my left ear balance has compensated for the right ear loss (for the most part). All is well.

Best regards,

Bob

[Jeffbud84]

Craig Not to scare u, but they all tell u that. You will most likely lose all hearing if it is 2cm or more.

[bobchatt1]

My doctors ... and the literature search I did prior to surgery ... all indicated the odds of preserving hearing were 50/50 at best. It all depends on what they find when they actually get to the tumor...where it is attached and how hard it is to remove. I chose the translaberinthine approach...which sacrificed my hearing ... because I had very little hearing left.

[pukatea1]

Thanks Bob I have a 3.6cm AN on my left side and I am having surgery in Feb so video was helpful

[bobchatt1]

Good luck to you with your upcoming surgery. The weeks and days leading up to surgery are pretty stressfull and full of anxiety. Trust your doctors and the hospital staff...they know what they are doing. Please send an update to let us know how you are doing ... when you are up to it.

Bob

[rspencer102]

Had surgery on 12/14/2009 to remove a tumor on my left ear nerves. Surgery lasted 8 hours but was successful. As of today's date 01/01/10 I still have a little facial weakness on my left side and ringing in my ear. The doctor said that this should not last more than 4 weeks. I also have a lost of balance on my left side and I am doing therapy to regain my balance. I just hope that the ringing goes away soon. Spent 6 days in the hospital. Feeling good just waiting for the paralysis to go.

[bobchatt1]

Sounds like you are doing fairly well. I also had some facial weakness (scare me)....right after surgery. My doctors put me back on steroid medications (10 days)to control swelling and inflamation. And it worked. I am now 5 mos post surgery and the facial weakness is completely gone. Best wished to you in your recovery.

Bob

[blessedbm]

Thank you for posting your experience with your surgery to remove your Acoustic Neuroma. I have a Acoustic Neuroma on the left side (1.5 cm) Proceeding with surgery in Feb 2010. Fighting the good fight of Faith getting through this. I have 3 children. Thus far, the Otologist suggest the retrosignoid approach. I'm pleased and very happy that you are doing well and that all turned out successful and recovered well! Again, thank you for posting this video.

[bobchatt1]

You are welcome....

Most of the videos that I had seen prior to my surgery scared me. And ... I had and continue to have such a positive surgical outcome that I felt a need to "pay it forward" and post a video of my own.

Best wishes to you with your upcoming surgery. Please let me know how you are doing.

Bob

[craig29520]

Hi Bob,

I have a 1.1cm AN in my right ear and having to wait on an otology/neurotology doctor is in China doing a surgery. I also had to wait on the doctor that I spoke with last Monday due to him being in Israel performing surgery. I hope that this is a good indication that these guys know what they are doing and that I have good outcome as you have. The doctor that I have seen is a guy named John T McElveen said that he might be able to preserve my hearing and that surgery should go well.

[bobchatt1]

Hey Craig,

I hope all is going will with you and your upcoming surgery. Bummer having to wait....that is difficult. But I agree... that may be an indicator that your doctors are in high demand. Thre are surgical options that attempt to preserve remaining hearing. I chose the translaberinthine approach that sacrificed the hearing....as my tumor had attacked and taken out most of my hearing anyway. Good luck! Please let me know how your surgery goes.

Bob

[Clearymartin]

Hi, how are you doing now? I am 2 weeks post-op. Loss of hearing. Loss of balance. Daily headaches. Lost of taste (everything tastes bland - or somethings do have a slight hint of flavor..) but mostly just like eating paste.

Did all that happen to you, even the taste?

Thank you and hope you are still doing great! Carol

[bobchatt1]

Hi Carol ... I continue to do well. I did lose taste...but that lasted about 3 weeks. I did not experience headaches as you describe them (thankfully). My challenge is balance. I walk fine but I crrashed hard the first time I tried to ride my bike. My doctor told me it was too early to be on a bike. He gave me a full page of balance exercises to force the balance in my good ear to take over. It seems to be getting better... but I haven't tried riding my bike ... yet.. :)

[Clearymartin]

I would not get on a bike yet, that's for sure! Brave to even try for months after surgery like that! I'm only 2 weeks, but I still can't see that for a while. Glad to hear the taste will come back. Annoying to not be able to hear. I'm sure I'll get used to it. Thank you for the update, I hope you continue to do very well! Carol

[Jeffbud84]

Hey Bob, I am 25 years old, and discovered i had a AN tumor 2.3 cm. I found out back in June, and had surgery July 30. I lost all my hearing in my right ear. I am starting to get use to it, but still very weird going from perfect hearing to no hearing. My surgery took 7 hours. I also had facial weakness for about 2 weeks. I am very lucky that i have excellent medical insurance as well. I paid about 300 dollars from the first doctor visit to now. thanks for sharing and good luck

[bobchatt1]

Jeff ... It sounds like you are doing well (mostly) and are adjusting to the hearing loss. Check out bi-CROS and BAJA hearing aids (I'm exploring them now - 3 mos post surgery). These two options are designed for people with single sided hearing. ...and look real promising. Good luck to you as well.

[cyndibourne]

Bob - thanks for the video! I have a 14mm AN (found in June), and am on the wait /see option, next MRI in Dec. The past 5 months I have read a lot of horror stories. And since my symptoms are worsening, I think my AN is growing. At this point I wish it had been removed right away, but I wasn't really given that option. Your thoughts about getting it while it's small sound like a good idea to me! I think I will try to get in for surgery asap, and hopefully my recovery is as good as yours...

[bobchatt1]

Yes....I'm very thankful that my tumor was discovered early ... and since it had done so much damage (hearing and balance) I needed to get it out as quickly as possible. Also ... thank God for medical insurance ... this is a very costly procedure. Good luck to you Cyndi. My thoughts and prayers are with you.

[jwrigh9]

Great video! I'm so happy that you are doing well.

[Hollywood103]

I am actually seeing someone at the House Ear Clinic too and they said there is a very, very small acoustic neuroma present. Being an actor, I'm faced with a difficult decision on whether to "wait/watch" or be thankful its so small and get it out asap. Anyway, your video was beneficial...great story and glad to see you are doing well!

[bobchatt1]

I was just back at the House Ear Clinic today. I'm exploring hearing aids for my bad ear. These are aids that route sound from my bad ear over to my good ear. CROS and BAJA are the options I'm exploring....and both look very promising.

[evins213]

Bob,

Thank you for posting this video. I've got a 1.4cm Acoustic Neuroma (Vestibular Schwannoma) on the nerve and I'm meeting with Dr. David Haynes at Vanderbilt tomorrow.

I've only lost the upper registers of hearing in my L ear.

Isn't technology and the internet great.

Ed Evins

Nashville, TN

[bobchatt1]

My pleasure Ed. You are the reason I posted my video. There didn't seem to be any personal stories from folks with small or medium AN tumors. I am still feeling incredibly fortunate with how successfuly my surgery was....and how few complications that I experienced.

Good luck to you... on your journey.

Bob