Author Topic: Hello I am a family member with questions and concerns.....  (Read 7549 times)

Carson

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Hello I am a family member with questions and concerns.....
« on: October 15, 2008, 02:04:26 pm »
Hello everyone...

My name is Carson and my father was very recently diagnosed with acoustic neuroma. 

To say the least we are concerned and thankful.  Concerned because.......well its obvious.....((smile)), Thankful b/c his dentist sent my father to an ENT doctor when he went in b/c his front tooth chipped ( he could fix that) and he had loss of feeling and taste on the left side of his tongue (this..not so much).  Had the dentist not sent him honestly.....we would not have found out for awhile (my dad is not a complainer  ;))

From what I have read he has a moderate tumor which is roughly 2.5cm pretty much the entire way around.....it is barely still in the inner ear and is laying on the brain and with his loss of taste, feeling, and the numbness that has now taken his left forehead, cheek, roof of mouth, and lip.....we are fearing a long recovery.  For several years my father has been loosing his hearing in his ear....we chalked it up to possible damage done in the army.  We never expected this.  I guess you never really expect this though, do you. 
My father is 57 and as active as can be expected considering he has a twisted spine ( not even sure how that happend...LOL).  Honestly I think this is his biggest concern. How is he going to lay still for so long? The MRI was bad enough...but now to be "down" like this....he doesnt think he will be able to walk once he is has recovered from the surgery. 

We have our first appt at The Ohio State University (we live in Ohio ) on the 24th and surgery has already been scheduled for Nov 4. 

If I could ask for advice from some of you, I would appreciate any info you could give!  I simply want to help prepare my entire family and ,of course, my father.  My family and I live an hour from my parents so I guess this is helping me feel like I am doing something for them......it is devestating simply b/c we have never had anything like this with our family.

 Knowing that removal is our only option what questions should my mother and I be asking at the appt.?

Thank you so much,
Carson
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

MAlegant

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Re: Hello I am a family member with questions and concerns.....
« Reply #1 on: October 15, 2008, 03:10:53 pm »
Hi Carson,
Somewhere on this site there is a list of questions to ask.  If you search you should find it.  Have you all gotten a second opinion?  I had my surgery at UH in Cleveland but only after a consult at Cleveland Clinic.  Second opinions are really important.  I guess the single most important question to ask is how many of these procedures (AN's) does this surgeon perform?  You really want an experienced specialist.

As far as walking goes, I was up and around within 48 hours, not unlike many others, so although I did need to rest quite a bit, I was never bedridden.
Many other people will respond and welcome you and will be here to support you and your family.
Best,
Marci
« Last Edit: October 15, 2008, 05:06:37 pm by MAlegant »
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

HeadCase2

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Re: Hello I am a family member with questions and concerns.....
« Reply #2 on: October 15, 2008, 03:14:06 pm »
Hello Carson,
  Welcome to the ANA Forum.  There are a lot of caring people who have all gone through being diagnosed with AN, and know first hand how surprising an AN diagnosis can be.  Thank goodness it's non-malignant condition.  Many many people have been through what your father is going through.  
  If your father is active now, he will be active after AN treatment.  Having AN surgery can affect balance and vestibular processing if the vestibular nerve is cut during surgery, and I would expect with the medium size of your father's AN that the vestibular nerve will be cut.   There is an adjustmant period for balance after surgery that can take days to weeks.  The brain has to relearn how to deal with just one vestibular nerve.  Doctors say that if the AN patient was having balance issues before surgery, that the relearning may have already strarted, and post surgery balance recovery would be quicker.
  You can search through the posts on this forum and find out a lot of good info and experiences.  
  Radiosurgery is an AN treatment option, but my guess is that since your dad is already experiencing symptoms of the AN compromising the facial nerve, that doctors will recommend surgery. Post radiation swelling could further compromise the facial nerve.  Both surgery and radiosurgery are affective AN treatment options.  
  You may not realize it, but you're probably in the Information gathering phase that we all go through.  When we try to find out as much as possible about AN, AN treatment, potential after affects, etc.  
  The good thing about modern medcine, and the development of AN treatment, is that the the treatment technogies have come a long way and are quickly reducing the chances of side affects to very low percentages.  One thing that's important is to find a AN treatment team, in this case a Skull Base Tumor surgical team with a lot of experience treating AN.  
  Sorry for being long winded.  Let us know what questions you have and we'll try to answer as best we can from our experiences.  
Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Boppie

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Re: Hello I am a family member with questions and concerns.....
« Reply #3 on: October 15, 2008, 03:26:20 pm »
Carson,  I believe your Dad will do fine with the recovery from surgery.  At 57 his strength is still good and perhaps peak if he has remained active and does core type movement in his daily work.  Having served in the army must have given him some resilience.  

Post op recovery is about walking a lot.  One doesn't need to run or do rapid movement to regain balance.  Your Dad's balance nerve probably gave up some time ago on the affected side.  My own balance recovery was satisfactory by the second week post.  I had no complications that kept me in bed.  So I was able to walk on my own immediately post op.  I will keep your Dad in my prayers.

I was raised in Ohio so I know how the cold can keep one indoors during the winter.  It will be important for your Dad to have access to places to walk and regain balance strength on a daily basis for at least 3 months following surgery.  By Spring time he will be back on the road.  Watch for depression which can follow the hearing disability your Dad will deal with.  Remember to look at his face when you speak, no need to shout, but let him see your mouth moving.  Single sided deafness is unique and not simple to explain to others.  You can help your Dad by reading  more here on the threads.

It is wonderful for family to give support at the hospital on surgery day.  But you should expect a long wait for the surgery to be complete.  

Jim Scott

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Re: Hello I am a family member with questions and concerns.....
« Reply #4 on: October 15, 2008, 04:08:44 pm »
Hi, Carson:

Please accept my welcome and also my regret that your father has been diagnosed with an acoustic neuroma.  That being the reality, you've come to a very good place on the internet.  We don't have all the answers but we do have a a lot of caring, AN-experienced folks of all ages and from every walk of life, living all over the country (and the world) that visit these forums offering useful advice and information.  I have to caution that we're not doctors and cannot dispense medical advice but we can and do submit practical advice, when requested, regarding the many aspects of an acoustic neuroma diagnosis.

At 57, your father is five years younger than I was when I received my diagnosis, underwent both surgery and radiation then recovered fairly quickly with almost no complications.  I state this as an encouragement for you.   Of course, we're all unique and one person's experience doesn't guarantee anothers but I thought you would like to know that all is not doom-and-gloom when the AN diagnosis is pronounced via the MRI scan.

As previous stated by Marci ('MAlegant'), the surgeon's experience is vital to a good outcome.  My neurosurgeon had over 30 years experience performing AN removals.  While many factors are in play when seeking a positive surgical outcome, the surgeon's experience and expertise are crucial.  This is the #1 on the question list: "How many of these have you done, Doctor?"  Understand that some questions cannot be answered because doctors are not omnipotent, much less, clairvoyant.  I was very concerned about facial paralysis. My neurosurgeon understood my concern and took it seriously.  Just before surgery, he looked me in the eye and said, quietly and sincerely: "I'll do everything I possibly can to avoid damaging the facial nerve".  He did.  The doctor even had a specialist flown in to monitor my facial nerves during the operation.  The nerve monitoring is fairly common but the fact that my neurosurgeon hand-picked someone from out-of-town (Philadelphia) to perform the monitoring gave me confidence going in.  It was rewarded, fully. 

My wife has serious spinal problems so I can empathize with your father's concern about the extensive time lying on his back during surgery.  Because I cannot credibly answer that I suggest you and/or your dad make this question #2 during your consultation.  I would caution against being too hasty in agreeing to surgery unless your father's AN is truly endangering his life.  Some ANs do.  Again, ask the doctor....and please consult with at least one other surgeon with AN removal experience to get a better context for your father's final decision on surgery. 

As you probably realize, while the tumor is benign (not malignant) it resides in a place that makes it problematic and difficult to remove.  The surgery is long and there can be complications...but not always.  The majority of AN surgery patients do just fine, albeit with some work on their part (regaining their balance functions) and of course, the healing takes time.  Unfortunately, in most cases, SSD (Single Sided Deafness) is unavoidable, especially if hearing has already been lost.  That was the situation in my case but I've adjusted and compensated fairly well.  Many do.  However, there are BAHA (Bone Anchored Hearing Aid) devices that can help artificially 'restore' hearing in the 'deaf' ear, so your dad will certainly have that option.  I didn't choose to avail myself of that option but I may change my mind at a later date. 

Overall, Carson, I think your father's chances for a successful AN removal are good and of course, we all hope for a very positive outcome and rapid recovery.  We'll collectively be rooting for him and of course, we encourage you to visit this forum and ask whatever you feel you need to know.  If we can answer, we will.  Meanwhile, take a deep breath, know that your dad will survive this and be assured that you have a host of friends here ready and willing to help and support you, your dad and the family in any 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.

leapyrtwins

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Re: Hello I am a family member with questions and concerns.....
« Reply #5 on: October 15, 2008, 04:57:06 pm »
Hi, Carson - sorry to hear about your dad - but chances are good he'll be fine once his AN is treated.

I'm a little confused as to how his surgery is already scheduled, but he wasn't had his first appointment yet  ???  This seems totally backwards.  Is this correct?  Or did I read your post wrong?

Regarding questions to ask the doctor - here's a link from the ANA Website main page http://www.anausa.org/questions_for_physicians.html

As for walking post op, the docs actually encourage this kind of activity since it helps with balance.  Post op balance is usually off quite a bit and the body needs to adjust; walking actually helps.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mk

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Re: Hello I am a family member with questions and concerns.....
« Reply #6 on: October 15, 2008, 06:23:27 pm »
Carson,

Reading your dad's symptoms and the dentist story was as if I was reading my own story. My presenting symptoms were facial numbness, odd taste and dry cornea (leading to dry eye, which at that time  I had no clue that was because of the AN). I didn't have any hearing loss though. When diagnosed my AN was reported to be of similar size.
These symptoms are due to the tumor affecting the trigeminal nerve, not the facial nerve, that's why they are not severe.

At this size, along with the two surgical options (I think that middle fossa is not advisable at this size, but I may be wrong) your dad still has the option of radiosurgery, although nearing the borderline. The main advice I have for your family is not to rush into surgery, with the first surgeon that's available, but to consult, get as many opinions as possible and research the options. The worst thing is to be rushed into any type of treatment uninformed, without knowing the possible implications and outcomes.

Feel free to PM me, I would be happy to share my experience.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Yvette

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Re: Hello I am a family member with questions and concerns.....
« Reply #7 on: October 15, 2008, 09:06:54 pm »
Hi Carson, you are so caring to be hunting info down so that you can help others in your family. 2.5 is moving out of the medium range though. The good news with larger tumors is that the balance center on the other side of the brain, has already begun to take over function. My tumor was 3cm, and I was warned about possible post op vertigo, extreme dizziness and nausea, but had nothing:-)  I was the same (in terms of balance) as before surgery. The docs said that the other side probably had been taking over for the last few years. Patients with smaller tumors often get that rug pulled out from under them effect. Be aware that with SSD (single-sided deafness) your dad won't be able to separate background noise, especially in louder restaurants etc.  Just like you need two eyes to see depth, you need two ears to hear in stereo. I found musician's earplugs helpful in some situations, and I have a special speaker hooked up to the TV that amps just the octaves of the human voice, since background music/noise in movies makes it really hard for me to understand what they are saying. I had my surgery translab at the Mayo Clinic a little over a year ago. My surgeon did about one AN surgery a week for the last 8 years. Best wishes, and keep us up to date:-)
Yvette
3cm translab Jan. 2007 performed at Mayo Clinic MN. by Drs. Link and Driscoll. SSD but doing great!

Carson

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Re: Hello I am a family member with questions and concerns.....
« Reply #8 on: October 16, 2008, 06:05:57 am »
Thank you all so very much!!!  I know you can all relate with feeling like "you are the only one" dealing with this.  When I explain to people what is going on no one has ever heard of AN......but there is so much out there that we dont know until it happens to us.... :)  It is so very  nice to finally after 2 weeks of searching find a place to come and feel "normal".  My father will appreciate all the information you have offered and of course my family and I appreciate your prayers and encouragement!! 

I cant begin to thank you all for sharing your experiences! ;D

Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

Carson

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Re: Hello I am a family member with questions and concerns.....
« Reply #9 on: October 16, 2008, 06:08:55 am »
Hi, Carson - sorry to hear about your dad - but chances are good he'll be fine once his AN is treated.

I'm a little confused as to how his surgery is already scheduled, but he wasn't had his first appointment yet  ???  This seems totally backwards.  Is this correct?  Or did I read your post wrong?

Regarding questions to ask the doctor - here's a link from the ANA Website main page http://www.anausa.org/questions_for_physicians.html

As for walking post op, the docs actually encourage this kind of activity since it helps with balance.  Post op balance is usually off quite a bit and the body needs to adjust; walking actually helps.

Jan


Hello Jan,

Yes you read my post correct.......The ENT doctor called OSU set up the appt and then scheduled the surgery.  I found this odd as well....but until you brought it up ....I thought it was normal procedure.  I am just not sure I will be able to convince my parents to seek another opinion.
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

leapyrtwins

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Re: Hello I am a family member with questions and concerns.....
« Reply #10 on: October 16, 2008, 09:48:01 am »
Carson -

I find this very odd - kind of sounds like they are "pushing" surgery (just my opinion).  Is your dad comfortable with that?

Please make sure that your dad asks the appropriate questions to make sure the surgeon(s) has the experience necessary.  He doesn't want just "anyone" doing his brain surgery. 

If you're comfortable telling us who his doctor is, perhaps someone from the forum has been treated by him and it might help you feel better about the whole situation.

Just a thought,

Jan


Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

leapyrtwins

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Re: Hello I am a family member with questions and concerns.....
« Reply #11 on: October 16, 2008, 09:55:20 am »
Carson -

just read Steve's post on your other thread. 

Sounds like Dr. Welling is a good choice.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Carson

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Re: Hello I am a family member with questions and concerns.....
« Reply #12 on: October 16, 2008, 01:04:36 pm »
Thanks Jan,

Actually after your inquiry about the surgery date I called my mom b/c as you know I was confused about this as well......she is the one that actually had them set up a surgery date......with the way her work schedule is (retail) and wanting to make sure we had some sort of schedule on who and how he would be taken care of.....she is a planner, everything has to be set ;) 
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

Sue

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Re: Hello I am a family member with questions and concerns.....
« Reply #13 on: October 16, 2008, 02:00:30 pm »
Yeah, I totally agree with Jan.  It seems a bit pre-mature to schedule surgery before you even have a consultation.  Granted, he might not have a choice of radiosurgery because of size and location of his AN, but still, he may prefer to go elsewhere for his surgical treatment. You can also get a free consultation with House  (HEI) in Los Angeles.  Admittedly a long way to go, but the free consultation is well, free, and you are under no obligation to pack up and head for LA because you talked to these doctors.  www.hei.org  This is their main website, and I'm sure you can navigate from there to find out about their consultations.  You do need a copy of your father's MRI report to send to them. 

It's overwhelming.  We all know that!  I was a good candidate for radiosurgery so I had Gamma Knife done, which is working out okay for me.   I too have the facial numbness and some days my tongue really bothers me, and some days it isn't so bad.  Mine will probably never go away.  Sorry to say.  This is the involvement of the facial nerve, which causes these problems.  Your dad has my sympathy and understanding. 

And we can never stress the importance enough of getting a well experienced team to do the surgery.  They will certainly address his concerns about his back and limitations in that department, but make sure you ask the doctors about that.  And if you join the ANA, your father will get some information and some questions to ask the doctor.  And above all else, don't let the doctors rush him into something he isn't comfortable with.  I mean, if he is not happy with the "gut feeling" he has with the doctors, then he should find somebody that he is really comfortable with and has confidence in. 

I welcome you to the forum and wish your father a speedy recovery from his treatment and please, let us know how it's going with him. 

Sue in Vancouver WA USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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leapyrtwins

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Re: Hello I am a family member with questions and concerns.....
« Reply #14 on: October 16, 2008, 10:08:56 pm »
I called my mom b/c as you know I was confused about this as well......she is the one that actually had them set up a surgery date......with the way her work schedule is (retail) and wanting to make sure we had some sort of schedule on who and how he would be taken care of.....she is a planner, everything has to be set ;) 

Carson -

your mom sounds a little like me.  I hope your dad isn't a "planner" - also sometimes known as a control freak  ;)

I am one and it was hard having patience and letting people "wait on" me during my recovery.  The entire dynamics of my life changed for a few weeks  ::) 

AN surgery and recovery isn't something you can really have control over, so it's best to just let go and allow the docs to do their job.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways