just diagnosed, scared about surgery effects and recovery!

[Kennystiebs]

Hi, im ken new to this site. I'm 21 and was diagnosed with a fairly large tumor, 4.3cm. anyway im getting surgery this august and i'm pretty nervous about it. i'm getiing the surgery done at the university of Pennsylvania by Dr. Donald O'Rourke. I've read UPenn is a really good hospital and any info anyone has on the doctor or hospital would be greatly welcome. My biggest concern though is about the effects of surgery, theses questions may have been answered already numerous times. I was wondering how long it takes to recover from? How much rehab i would need to do if any? And my doctor my face may be permantly paralyzed which scares me, i don't want a paralyzed face for the rest of my life, How likely is facial paralisis and how long does it last? I've givin up and saving the little hearing i have on my left ear cause i heard its pretty difficult to save. Finally any information has on recovering in general from the surgery like what its like would help alot. I'm pretty nervous about this sugery,
thanks,
ken

[ilsemor]

Ken,

Have faith!  Every person's recovery process is different, you're young and you have a life ahead of you, I hope your parents are involved with you in this decision. 

I have read of people with large tumors with good results.  Get second and third opinions and go with your guts, you have to trust your doctor, if you don't please look around, there are plenty of good doctors in this country.

I'm in Los Angeles, I had my surgery at House, if you decide to come here let me know, I could be your guardian angel and try to help you through your visit.  E-mail me if you want, I can always call you too.   

Pray for a good path...it will be drawn for your. 


Ilsemor

[Kaybo]

Hi Ken!
I just sent you a PM - look under "My Messages"

K   

[Jim Scott]

Hi, Ken -and welcome~

You have reason to be concerned about your upcoming surgery but I hope you don't allow your fears to overwhelm you.  AN surgery is a challenging proposition for both the doctor and the patient.  Recovery varies and no two AN surgery patients have the an identical experience.  However, for what it's worth, I was diagnosed with a tumor slightly larger than yours (4.5 cm) and came through the surgery just fine - no complications - and underwent radiation 3 months later (as a back-up plan) with no negative consequences.  Oh, and I was three times your age at the time.  My point is that facial paralysis is not necessarily unavoidable with AN surgery.  Many of our members have emerged from surgery with no facial paralysis or just a slight facial 'weakening' that often is temporary.  I don't have statistics at hand but I seem to recall that the incidence of facial paralysis in AN surgery patients is around 20 - 30%.  A lot depends on the exact location of the tumor and the doctor's skill.  To answer your question about recovery time: 6 weeks is average but that is not a guarantee.  Some AN surgery patients bounce right back within a few weeks, others need months and many fall somewhere in-between.  As I stated in the beginning of this message, recovery experiences are varied.  We can offer averages - but not absolutes.  Incidentally, if being SSD (single side deaf) proves to be a real problem (it does for some) there are BAHA (Bone Anchored Hearing Aid) devices available that are a great help.  If it becomes necessary, there is a lot of excellent therapy available for facial weakness as well as facial 'reanimation' surgery.  Post-op balance is often a bit of a challenge (it was for me) but there are many balance therapies available, too.  I hope you have family support, which is always a great help both during and especially following AN surgery.  In any case, thanks for posting.  We're here to inform (as best we can - we're not doctors), advise (when asked) and, most of all, encourage and support AN patients, like you, Ken.  Please keep us updated.  Thanks.

Jim

[CHD63]

Hi Ken and welcome to this forum ......

Yes, indeed, this is a scary time. So glad you have posted.  You will find much support here among your new friends.

If you have not already done so, send for the free information packet from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195  You will find much useful information and reassurance.

Since your AN is on the large side, you really do want to have the best surgeons possible to deal with it.  You may want to get additional opinions.  It should not be a given that you will have facial paralysis.  Much can be done these days, depending upon the skills of the surgeons, to prevent that.  You can always get an opinion from other experts without committing to going elsewhere.  House Ear Clinic in Los Angeles, for instance, will give free consultations if you send your MRIs to them, as well as other well-known facilities around the country.

Many thoughts and prayers for peace and answers during this pre-treatment time.

Clarice

[Silver Sonnet]

Hi, Ken   Sorry to hear about your diagnosis, but glad you found us.  The people here are simply wonderful.

I agree with ilsemor--please get more opinions. A doctor who  I talked to at least four neurosurgeons before making a decision, and every one of them suggested something different.  At first, I just wanted to go with the first one and get it over with, but then, as the reality of the situation began to sink in, I became a lot more proactive about it all. 

The good thing is that, in most cases, you can pick up the phone and talk to a surgeon.  I called House Ear Institute shortly after I was diagnosed, left a message, and within 5 minutes, Dr. Brachmann had called me back and talked to me for probably 20 minutes.  I mailed him my MRI, and he called back again and discussed specifics with me.  The same happened with the other doctors, and none of it cost a penny--at least not up to that point.  So shop; be sure you are comfortable with the doc and what he plans to do (as much as you can be comfortable with any of this!)

Generally, the surgeons will ask you to send them copies of your MRI and hearing tests, so it's a good idea to get a stack of those and just keep them handy.  Here, at least, I just had to go to the hospital where I had my MRI and ask for copies.  They were free, so get three or four copies just in case.

Your surgery isn't scheduled until Aug., so you still have time to shop around. 

You were just diagnosed, so give yourself time to come to grips with the idea that you have the tumor at all.  I grieved, cried, threw things, and generally just got it all out of my system.  Now, thanks to lots of support and lots and lots of research, I'm very calm and not at all nervous about my surgery (in 5 days).  Give yourself that time, and ask every question you can think of.   It will all help in the long run, and this is all about the long run.

Get more opinions

[jaylogs]

Hello Ken!! I read through the responses to your posting and you have gotten a lot of good advice!! Jim pretty much nailed everything I would say about your situation.  You do have the advantage of youth on your side, as it is generally a given that you'll bounce back quicker than most.  Again, as Jim rightly pointed out, everyone's experience is unique.  You'll find that we are a compassionate group here who will help any way we can, and any question on here is not a stupid question so please continue to ask away.  We don't sugar coat things here either, we can be honestly blunt because, well, this is brain surgery and it is a major one.  But, we've also seen MANY MANY success stories so take comfort in that knowledge.  Take care and keep us updated.  Oh, also if you could, tell us your story on what led you to being diagnosed.  I'd like to hear it!
Jay

[Kennystiebs]

thanks everyone for the info and support it is very useful and apreciated. im getting a hearing test on thursday to i guess see if the hearing in my left ear is worth saving?, then i think im meeting more doctors i think in prep for the surgery sometime in august, and jay you were curious as to how i became diagnosed. Well im a pretty athletic person, i attend the gym alot and run freqeuently and had been running outside one day and noticed that my left leg was not fully able to keep up with my right leg and running was just awkward, i kind of brusd it off and then at the gym i noticed that when lifting weights my left arm and leg shook when i did any isolated weighted movement with them. so i waited to see if theses problems would pass and they didn't and i knew deep down something was wrong, i called my primary physician who rdered me to get an MRI which showed the tumor, Believe it or not the hearing loss in my left ear was the last thing i noticed. as of now i've meet my nuro-surgeon and have mettings and tests with the other surgeons who will be performing the surgery which i found out will take 8-10 hours and be performed by at least two neuro-surgeons and an ear surgeon! so here is hoping everyhing goes well. I've done some research and my Neuro-surgeon seems to be pretty well known here on the east coast anyway, and the hospital (University of Penn) is ranked 9th in the country overall, and 15th in the country in neurosurgery  according to U.S. News. so that has made me much more comfortable with the prospect of surgery, thanks again everyone ill keep updates rolling in!

Links to the research on the hospital and doctor in case anyone was interesed:

Hospital: Scroll down, click Hospital of the University of Pennsylvania
http://health.usnews.com/health-news/best-hospitals/articles/2010/07/14/best-hospitals-2010-11-the-honor-roll
Neurosugeon Bio:
http://www.pennmedicine.org/wagform/MainPage.aspx?config=provider&P=PP&ID=7991

[bri-82]

Kenny - I'm sorry you've had some bad luck. But fortunately for you your age is hugely in your favor. I just had AN surgery and am now recovering and experiencing some of the post-op symptoms you're concerned about. I'm 28 and have had facial weakness and paralysis on the affected side of my face for roughly 2 months. It can be a bit frustrating and annoying to deal with at times but, as other members have mentioned, its usually temporary and will improve over time.

Reading my intro post may give you some insight into some of the issues you may have to deal with as you recover. My tumor was difficult to remove due to its location and orientation around critical structures so don't use my experience as a template and realize that there really isn't a "norm". Every case is different.

But above all, remember your age and that time is on your side.

[Tod]

Hey Ken, welcome to the site. You are in a good place for venting, support, and information. I had a similar-sized tumor that turned out to be very difficult to reach and very sticky because of its most excellent blood supply. At the age of 48 I had a 32 hour surgery that is decidedly atypical. My recovery was somewhat slow because of two weeks in ICU and 36 hours of anesthesia, but after 10 weeks at home I was back at work. I had facial paralysis that was mostly recovered by the time I returned to work. I had some other issues, such as a paralyzed vocal cord, but those have been recovering nicely.

Today (16 months later) most people would have no clue, even with the problems that remain, that I had been through something of this nature. I am back to backpacking the Appalachian Trail and working 15 hour days (or longer).

Life is beyond good.

As Jim said, location and nature of the tumor make a big difference. Your age gives you a big advantage.

Good luck to you on your journey.

-Tod

[skipg]

Tod,
Backpacking the AT after serious AN surgery, I am impressed and encouraged as I am in the WW Brigade. One thing I have not noticed in the many posts I have read, except for Derek. That is keeping or getting your body in the best shape possible before surgery. I know first hand how difficult this can be as I have fought the C&C sweet treat beast for years ( cookies and chocolate). I try to maintain a healthy life style. Lots of fruits and vegetables. Barley green drink and loads of vitamin D (supplements) and A (carrot juice). Also liquid B12 for energy and cod liver oil for brain health (boy that worked well). Take all of that and mix in a whole lot of faith and prayer and excercise, and I am trying to discourage that little guy to shrink and go away. Congrats on your wonderful progress.

Ken,
Sounds like you are taking charge and doing what is best for you. Keep up the good fight and know that we are here supporting you and believing for a great outcome.

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