Author Topic: And it's "not hereditary" ??  (Read 7946 times)

april428

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And it's "not hereditary" ??
« on: November 15, 2008, 09:03:02 pm »
Hi everyone--

This is my very first posting because I just found the forum.. I wish I'd have found sooner... this seems to be a really wonderful place or support and information!

I am 29 years old and I went to see an ENT in July for my slight hearing loss in my right year. I gave my history, which is that my mother, at the age of 54, five years ago, was diagnosed with 14mm AN on her right side and had suboccipital retrosigmoid approach at Johns Hopkins. Today she has very slight facial weakness, no hearing in her right ear, and no tears in her right eye (although the moisture is enough that does not need drops). Well, my very thorough ENT ordered an MRI to rule out the AN and a few days later I was called back and informed I did in fact have an AN.... 26mm x 27mm x 28mm.. it is pressing against my brain stem and I should have it removed by the end of the year.

I met with one doctor here in Charlotte who said my chances of getting the same post op results as my mother were best case scenerio and that more likely I would have mild to severe facial paralysis. Yikes! Not what this gal was excited to hear. So I did some research and was lead to the Carolina Ear and Hearing Institute in Raleigh-- because they'd done their training at the House Ear Institute. I had my consult in August and Dr Cunningham feels good about the results he can get using the translab approach.... I am still dealing with the though of the full hearing loss-- because right now, my hearing loss is not that significant.

So.... what I was really looking for was some words of encouragement. I have an awesome husband who is doing his best to encourage me through the roller coaster of emotions. I know it's pretty safe as far as surgeries go, but I always drawn back to the silly "what-if's". I have a daughter and son, seven and almost five years old respectively. I am scared about the procedure from time to time, scared about the recovery, unnerved by the unknowns. Okay, this sounds a bit more down-trodden than I was going for, and to be honest, most time I do quite well with the impending surgery.... schedule for December 18th up in Raleigh. Great timing right? :)

Well, thank to all for listening. I appreciate the forum! :) And has anyone else know of this happening in families?? My doctors were not nearly as interested in the mother-daughter link as  I thought they should be.

~April
36mm x 27mm x 28mm, right side
Minor hearing loss only symptom
Diagnosed July 30, 2008 (age 29)
Retrosigmoid (Suboccipital) Dec 18th 2008
SSD, no facial paralysis
The AN calendar http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: And it's "not hereditary" ??
« Reply #1 on: November 15, 2008, 09:13:02 pm »
April -

I'm glad you found us; you'll find lots of encouragement and support here.

While not unheard of, ANs are typically not hereditary.  I think Lori's dad had one and I'm sure there are others, but generally it's not a "family thing".  I come from a big family (my dad is one of 14 and I am one of 5) but so far I'm the only "lucky" one  ;)

Although all AN patients have a chance of facial nerve damage from surgery, some encounter this side-effect and some don't.  Doctors do their best, but none of them can guarantee anything 100%.  As for SSD, lots of patients adjust to it - others don't.  For those who don't there are options like the TransEar and the BAHA (my choice).

Best of luck with your surgery. 

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

QRM

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Re: And it's "not hereditary" ??
« Reply #2 on: November 15, 2008, 09:39:56 pm »
Hi April

I just found out the other day as well, so we are in the same boat, or in this case same roller coaster,  I see you have already have made the decision and booked your operation, good for you.  The first step is always the hardest.

I have been scoring the net to try and find the magic bullet , but have come to the conclusion the outcome of the operation, assuming you have good surgeons, is all down to fate, bit like asking a car salemans what are the chances of walking away after a crash. All depends on the day.

We are getting into a car and driving into a concrete wall at 40 mph, have to accept that we might not feel to good after the impact,  my logic is prepare for the worse and hope for the best, who knows you and a lot of people do just open the door and step out of the wreckage for a second chance at life.

I too have a young daughter, and althoough I am a guy I have been looking after her from day one, my wife works which is a blessing in many ways as the added burden of the bread winner suffering this would make life even more difficult, I am glad its me that has the AN not my wife or daughter.

All the best, you are not alone.

2.5 cm x 1.1 cm AN 30 Oct 08  Singapore Gleneagles Hosp.
Translab on  29 Jan 09 Dr. Friedman & Dr. Schwartz of HEI
Surgery a success!! had wonky head for a while and odd tastes
Everyday things are improving and getting back to normal.

MAlegant

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Re: And it's "not hereditary" ??
« Reply #3 on: November 15, 2008, 10:24:22 pm »
April and QRM,
Most of us do come out just fine with various sets of issues; some temporary, some not so much, and many with no problems at all.  I came out well, dealing with side effects, but I do have a life to lead.  You will learn things about yourself you never knew.  And it will mostly be good.
Take care,
Marci
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.

NL

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Re: And it's "not hereditary" ??
« Reply #4 on: November 16, 2008, 01:38:20 am »
Hi April,

Welcome to the forum. You're right that this is a fantastic place for both support and information.

I, like Donnalynn, decided to have surgery with Drs. Friedman and Schwartz at House Ear Institute. Since I still had great hearing on the AN side (and the location of my tumor), I chose to go with a retrosigmoid approach in hopes of saving my hearing.  I did lose hearing on the AN side, but it hasn't been a huge issue for me. Post-op fatigue and the hearing loss were the only issues I had to deal with.

Reading everyone's experiences on the forum (both physical and emotional) was a great help to me, as I'm sure they'll be to you.  You'll see that the emotions you're experiencing are completely normal for someone in our "unique" situation.

Wishing you all the best,

Nancy

1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

april428

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Re: And it's "not hereditary" ??
« Reply #5 on: November 16, 2008, 09:00:20 am »
Thank you so much for the words of encouragement. I do think-- even though it is so close to surgery time-- I will send my MRI to the House Ear Institute for a phone consult. Back in August I contemplated it but because of the distance and coordination that needed to be done if I went out to CA, I brushed it off. Thinking now, there is no harm in a third opinion. :)

I'll probably be reading my way around this place for a while.... some people's humor is just what I need to put everything in perspective, and sometimes it's the knowledge that everything will work out, the way it's suppose to. Thank you to everyone :)

~April
36mm x 27mm x 28mm, right side
Minor hearing loss only symptom
Diagnosed July 30, 2008 (age 29)
Retrosigmoid (Suboccipital) Dec 18th 2008
SSD, no facial paralysis
The AN calendar http://my.calendars.net/AN_Treatments

lori67

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Re: And it's "not hereditary" ??
« Reply #6 on: November 16, 2008, 11:20:24 am »
Hi April.

Jan is right (again!) - my dad also had an AN - his was small and since he also had Alzheimer's, he never had any treatment for it. His only symptom was hearing loss in one ear, which we had always attributed to age until his AN was discovered quite by accident.

And then I was diagnosed.  My doctor assures me it's not hereditary either, but I have my doubts.  I wouldn't be surprised to find out down the road that they find some hereditary factor, but I just believe that right now, they haven't found that link yet.  When they do, you and I can say - "See, we told you!"

Everything will work out.  I have little ones at home too, and they seem to be the best motivation to get better.

QRM - welcome to you too.  You're right in saying it's like driving into a concrete wall - but don't worry -  you have seat belts and air bags, so I believe we all are able to open the door and walk out - maybe a little off balance, but that's okay.  The important thing is to walk out and get on with things.

Good luck to both of you!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

mimoore

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Re: And it's "not hereditary" ??
« Reply #7 on: November 16, 2008, 11:27:03 am »
Hi April and QRM,
Welcome you are not alone. I spend lots of time seaching threads here. Lots of great information. Did your mother have NF2?
We are here for you ask lots of questions.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

april428

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Re: And it's "not hereditary" ??
« Reply #8 on: November 16, 2008, 05:17:26 pm »
Hey Michelle---

Nope, my Mom did not have NF2.... my doc asked the same question. I read somewhere the overgrowth of these schwann cells had to do with some protein imbalance. Maybe that'll be the key afterall. Who knows?

I know I feel bit better knowing exactly what it's like to go through this, as I was my Mom's constant caregiver during recovery, but then at the same time, and as dedicated as I was to her, it still wasn't me going through it, so it was a lot easier to keep cheering her on through the down points. I wonder if I can be that much of a cheerleader for myself? I have a feeling I may surprise myself :)

~April
36mm x 27mm x 28mm, right side
Minor hearing loss only symptom
Diagnosed July 30, 2008 (age 29)
Retrosigmoid (Suboccipital) Dec 18th 2008
SSD, no facial paralysis
The AN calendar http://my.calendars.net/AN_Treatments

mimoore

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Re: And it's "not hereditary" ??
« Reply #9 on: November 16, 2008, 07:42:42 pm »
April you will be stronger than you think. There may be times when you will need to dig deep but surround yourself with positive energy and don't let negative feelings bring you down. You have a very good idea of what to expect as far as recovery goes. No one knows for sure what ones out come will be. We hope for the best and prepare for the worst. Love will see you through.
We are here for you and like your mother we understand.
Hugs Michelle  ;D
« Last Edit: November 17, 2008, 06:31:50 am by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Kaybo

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Re: And it's "not hereditary" ??
« Reply #10 on: November 16, 2008, 08:41:52 pm »
April~
I don't know why I didn't get this sooner but a belated WELCOME.  I was 25 when I had surgery for my AN.  I guess that most would say that I had a lot of "after-effects" of the surgery, but you forge ahead and do what you have to do.  Lori is correct in saying that the kids really get you going - I didn't have my own yet when I had surgery but I taught 1st grade and those were like MY kids.  I was VERY anxious to start a family of my own so that too was incentive to get better!  I now have 3 beautiful daughters and a WONDERFUL, VERY full life - I always had a SUPER hubby!  Check out my blog (address below)!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Debbi

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Re: And it's "not hereditary" ??
« Reply #11 on: November 17, 2008, 09:19:42 am »
Hi April-

I'm  coming in a little late but wanted to say welcome anyway.  I wouldn't be surprised if they do someday find a genetic link with acoustic neuromas, just as they have with some cancers. 

In some ways you are more prepared than many of us were since you nursed your own mom back to health after her AN surgery.  And, this may sound like a strange thing to say, but I still think that my husband had the hardest job when I had surgery.  He was the one who had to worry and not be able to do anything, to see me laying there with tubes hanging out and a big turban on my head, he who felt the impotence of not being able to make it all go away.  My job was really pretty easy.  I went to sleep, woke up laid around for several days in a drug-induced haze and then went home and laid around some more... ;D

I know, I'm making this sound easier than it was - but I really do think it is sometimes harder for the caregiver than it is for the patient. 

Like you, my hearing pre surgery was pretty good, but translab gave me the best shot at saving my facial nerve so I opted for SSD with a better facial outcome.  I did have some paralysis, but have improved a lot.  You can look at my recent thread under AN Community - Debbi's Facial Progress for pictures if this is something that worries you.

Glad you found us, and hope you are having some peaceful moments.

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

Jim Scott

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Re: And it's "not hereditary" ??
« Reply #12 on: November 17, 2008, 01:39:16 pm »
Hi, April:

Our ad hoc welcoming committee has done a bang-up job, as usual, so all I can say at this point is welcome and God bless.  :)

I suspect you'll be posting more and perhaps then I'll have the opportunity to respond with something a bit more substantial. Meanwhile, please try to remain strong.

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.

suboo73

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Re: And it's "not hereditary" ??
« Reply #13 on: November 18, 2008, 05:51:45 am »
April,   I am a newbie, too, diagnosed this Sept. and doing my research now, while 'watching and waiting.'  But i have to tell you that i am FOREVER grateful to my older sister, diagnosed 6 months ago.  She gave me the courage to seek other opinions, and learn all i could about all treatment options.  (I was scared to do this after helping with caregiving for my younger sister and three hip-replacement surgeries.)  Some days, i feel like i am on a merry-go-round, and no one will stop the darn thing!

You can imagine that both my sister and i have asked the hereditary question. 
But there seems to be no clear answer on this at the moment - so i will be curious to follow this in the coming years as well.

I really appreciate all the postings, replies and information on this forum.
These people are fantastic!

I wish you strength in your journey.

Sincerely,
Suboo

suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

LisaP

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Re: And it's "not hereditary" ??
« Reply #14 on: November 18, 2008, 06:26:01 am »
Hi April,

Welcome to the Forum,

I too am I newbie, dx in March of 08, I'm on the "Watch and Wait",  I go back to Boston in Jan of 09 for my 3rd MRI.  You will find a lot of support at this forum,  we are all here for you.

I lost my brother back in October to a Glioblatoma Multiform Grade 4 brain tumor, he was only 49.  The doctors in Boston say there is no connection between my brothers tumor and mine.  I'm 46.

I disagree, I know that they are different kinds and mine is not CA but siblings having brain tumors at the same time????

Keep in touch and best of luck to you and your family,

LisaP :)
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W