Just found out yesterday....

[Samantha n Adrian]

Hello... Sam here.

I figured out how to save the MRI images we received and got to view today for the first time. I wanted to share with everyone here.

My initial reaction was a shocked gasp as I covered my dropped jaw with my hand in horror of how massive and intrusive this tumor looks. I immediately felt bad for reacting in this way because I do not want in any way to make things any scarier for Adrian then they already are. When the Doctor had told us the tumor was the size of a lemon I thought they had to be kidding... but after viewing these I understood exactly what they meant.


Front View - If you look closely you can see where his closed eyes are, his nose and the outline of the earlobe.


Side View


Top View

Does anyone else have MRI images to share?

As Adrian posted we are getting 3rd opinions. Amazing how your whole life changes in an instant... worries and concerns of just last week seem like years ago...

Thank you so much for the flood of information and support and most of all LOVE!

Sam~

[Crazycat]

MRI photos?......coming right up! (I'm sorry that you have to go through this Adrian. I'm here to share whatever I can of my experience with you).

Paul

[satman]

IT IS AMAZING HOW FAST YOUR LIFE CAN CHANGE.but together we will overcome,and together we will get through this, and hopefully relieve some of the fears of the new ones to come.

[matti]

Hi Sam and Adrian -  Glad you found our family and a big welcome!  I know this is a very scary and surreal time, but as others have said we are always here to help in anyway that we can. I had microsurgery for a 3.5cm AN in 1998 and just celebrated my 9th year post op and my life is great    I do have SSD (single sided deafness) and some balance/cognitive issues but I still do the things I did before surgery. So just want to let you know that life goes on after AN surgery/treatment and it's pretty darn good 

Reading through some of your posts, you mentioned that the first doctor gave you alot of maybe's. At least in my case, my MRI did not tell the whole story and it wasn't until the surgeon went in, did he see that the tumor had wrapped itself around the facial nerve and severly splayed it. I was also not expecting to lose the hearing nerve, but it had to be sacraficed to save the facial nerve. In fact the surgical appoach used (middle fossa) was so that my hearing nerve would be saved and my surgical team was confident that all would go as planned, but it didn't

One of the most important things during this whole journey is having a strong support system. Adrian and Sam you both are very blessed to have found that in one another. I don't know how I would have made it through without the support and understanding of my husband.

Hugs,
Cheryl

[satman]

hi matti,i'm just curious,what does "splayed"mean   
and i see  teeeee  every now and then,what is that?
just recently i found out what "ssd" meant,i got that. 

[matti]

Hi Satman -  Splayed basically means that the tumor was crushing the facial nerve and flattening it. Mine was the thickness of saran wrap. Teeee refers to tinnitus, although mine sounds more like a BZZZZZZZZZZZZZ 

Cheryl

[Dfcman]

I'd like to share some of my expereices and hopefully it will somewhat help in what you are going thru.  Let me say though, my sympathies go out to you guys.

I admit the MRI picture was really hard to view knowing I had something that size sitting in my head.  See I never really got to see it until after.  Maybe they didnt think I was ready for it and i'd be traumatized. I think its actually harder to see it now thinking "how did I ever overcome this?" 

I'm not gonna lie and say the experience tickles but its really not as bad as one may think.  Believe it or not I think having an AN was actually harder on my parents than it was for me.  Its probably gonna be harder for you Samantha.  I think the hardest part for me was patience and minor frustrations.  It didnt really hurt all that bad...I mean I was on alot of medication, but I just remember them constantly taking blood and ripping bandages off my skin...(I have alot of hair)  and THAT was the painful experiences I seem to remember most.

I'm about a year post op and I am doing fine.  I'll say it wasnt the best thing that ever happened to me, but in a way it really made me be able to appreciate life a lot more. Gave some clarity ya know?   I've really learned to cope with life and those stupid, dumb immature things are no match for me anymore.  It really toughened me up.  Anything nowadays I can just brush off and other things,and I realize I now know I have the power to change them.  Most recently, I enrolled back in school and i'm giving notice of my underpayed frustrating that I never had the guts to quit years ago, job.  Can you believe I actually quit school to work more in a minimum wage type job?  What a mistake that was.  I've really had the highest of inspirations and i'm sure you both will too.

A year ago I couldnt even take care of myself.  Walking, bathing, shaving..you name it.  Everything.  Despite a few minor things, I feel in a sense back to normal.  Its only been a year now and i'm already at the point where I say "acoustic nueroma?  Oh yeah, I had one of those."

[Samantha n Adrian]

Hello everyone, Adrian here.  I need some serious input and advice from prior House patients.  My assigned surgical staff is Luxford, Swartz, Stephan, but I can pick who I want.  I emailed House many questions this morning and they responded.  One of the answers is as such:  Dr. Schwartz and Dr. Hitselberger split the tumor removals, each doing approximately 125 tumor removals per year. Dr. Hitselberger has the most experience of any neurosurgeon in the world on removal of acoustic tumors and the most experience of any physicians removing tumors that are 4-cm or larger.  This is going to sound rude, and I swear I don’t mean it that way; in fact I’m completely impressed by this man’s accomplishments.  This person will be in my brain so I think I have the right to be concerned.  Dr. Hitselberger is 77 years old.  He and Dr. House basically wrote the book on modern day Acoustical Tumor removal.  I’m just worried that ones hands are not as “steadyâ€? any more.  I also find it a bit odd that his profile is not on the House Ear Clinic’s website or is he on St. Vincent’s Hospital’s website.  I would imagine that to be a huge “marketingâ€? tool.

I ask for input from those that had surgeries at House especially on large tumors.  I am in talks with House.  They received the CD of my MRI this morning.  I have lots to do with my insurance and House is not in network.  So far, they have been so organized and talk with vast experience.  From a “gut feelingâ€?, they got the job!...lol 

I want to say Thank You once again to all that have posted.  Reading your experiences is so informative and peaceful.  I must admit, when I see my MRI, I have a feeling of being “defectiveâ€?.  I don’t like that feeling of being “brokenâ€?.

Also, I lift weights and run 6 days a week.  I know that every case is individual, but how is exercise post-op.  Does anyone have stories?


Thank you,
Adrian

[Lisa Peele]

Adrian, I was once in your exact position...same age, same size tumor.  Dr. Hitselberger removed my 4.3 cm tumor (which was stuck to my brainstem) without further damage.  I literally walked away from the surgery and had a wonderful vacation in Southern California with my husband.  I attended a party 3 weeks after my surgery, and no one there (other than the hosts, who knew) could even tell I'd had surgery.  Pretty crazy!

Dr. Swartz is meticulous, and you should feel that you would be in the best of hands with either neurosurgeon.  (BTW, Hitselberger is in private practice...that's why his bio is not on the HEC website.  Also, many might not believe it, but House is not really into marketing.  You'd think they would be...but I have not found this to be true.  I had an amazing experience and outcome, I keep in close touch with my docs, and they have never asked me to help direct patients to them.  I do, of course, because I am so thrilled with how I was treated.)

I don't know anything about Dr. Luxford (although anyone at House should be the best in the field).  I would use Friedman or Brackmann and Hitselberger or Swartz.  Stefan is the internist and everyone who goes there goes through him (he's great). 

I recently went to an appointment with our local Children's Hospital audiologists for my daughter with Down Syndrome. I mentioned that I had an acoustic neuroma.  The Dr. asked where I was treated...when I said House, she had a huge smile.  "They're Rock Stars in our industry!  You could not have been treated at a better place!" 

I was once "broken" too...see my scan at left .  I was back to my normal routine within 3 months.

Please let me know if I can answer other questions for you.  I am happy to help in any way!

All my best,

Lisa

[sgerrard]

Adrian and Sam,

I've been reading your thread all along, as a newbie myself, it is amazing to see how you are working through this.

First I must say, that is more of a golf ball than a lemon. At least out West here, lemons are bigger than that.

Second, I Googled Hitselberger, and found his bio on the St. Vincent site:
http://www.stvincentmedicalcenter.com/ear/team/Pages/WilliamHitselbergerMD.aspx
He and Dr. House basically invented Translab and Middle Fossa surgery, and hauled AN surgery out of the dark ages.

Third, they use micro-surgery with remote controlled devices, so I wouldn't worry about the age, he is a legend. Plus they have a team of surgeons in the operating room anyway, don't they?

You guys show such energy and committment and courage, it is inspiring to follow. I have no doubt you will make it through, and manage to come out wiser and stronger for doing it. Thank you for sharing your story.

Best wishes, Steve

[Gennysmom]

Sam and Adrian,

Just wanted to say my thoughts are with you guys....totally agree with Dfcman that this will be hard on Sam (in a different way than for you Adrian), and I had that same crushing blow when you finally saw the "thing" in your head, but it will get better....in some ways, and in others you will adjust.  I'm glad you're taking the time to research this....you'll feel better about that in the long run.  We're in this for the long run for you guys, whatever you need....we are well versed in this road!

Kathleen

[Obita]

Hi Sam and Adrian:

Good for you for deciding on who gets the job.  That in itself takes off so much of the pressure.  I don't recall ever reading a post on here where someone had regrets about going with their gut. 

Adrian, you are going to need to take it real easy after surgery.  One of the biggest no nos for a while is lifting anything heavy.  You will get a ton of instructions, dos and don'ts etc....before you leave the hospital.  I am not a runner but there are many on here that are.  I am sure you will hear from them.

Good luck!!  Kathy

[OTO]

Adrian,

Dr. Schwartz is a lot younger that Dr. Hitselberger.   However, whichever neurosurgeon you chose will be working with your neuro-otologist Dr. Luxford.   I'm not exactly sure who cuts what, but they work together.  Dr. Schwartz was very good on my surgery.

Regarding exercise and lifting weights.   The first thing is no lifting of anything over 10 lbs for at least a month post-op.  Also if you read Yvette's post in the Post-Treatment forum, she had some complications after going back on her weight program.   It caused a CSF leak.   For me I was walking 2 mi per day, 2 times per week at 5 weeks post-op, and I went back to work at 7 weeks.  It will depend on how fast you overcome the dizzyness.   Running made my eyes bounce, and that really makes me dizzy so I stick to walking.  I never exercised pre-surgery, but the walking is part of the physical therapy.    I'm still dizzy but its not so bad that I can't walk, drive or work....   

Regarding your insurance, someone from the House Clinic financial department can work with you and your insurance company.   It's either Rita D or from the Financial office.    Although, I'm lucky because both the House and St. Vincent are considered under contract with my insurance company. 

   

[NF-2er]

   If large AN, I would prefer Dr. S.   -NF-2er

[lori78]

Wow Sam, I feel ya.  I am 29 and am livin in Richmond VA.  Was high functioning, working as a music therapist for folks w phys disabilities (includin MS.. I also hae lupus and was tested for that too.  I promise AN is better than MS.  My only symptoms were vertigo until theMRI revealed a 4 cm tumor.  WHAAAAAT?  Yea.  Since have undergone 13 hr of surg on Oct Friday the 13th and another 17 plus Gammma Knife in Jan and March.   right now, I can't feel my face, aftercare is HARD,  Lots of OT, PT and music therapy on myself!!  Had to relearn to walk, write, etc and am just taking it one day at a time.....

We are young... props to you for being proactive!  If u need someone young to chat w, I'm at loribrown78@hotmail.com

Best, Lori