Surgery in the near future....scared!!!

[sarahinPA]

I met with Dr. Paul Gardner yesterday at UPMC in Pittsburgh, we discussed surgical removal of my 2.5 cm AN. My AN was treated with Gamma Knife in Jan 2009 and has begun to regrow in the past year (3mm regrowth). Surgery appears to be my best and only option at this time.

I currently have pretty OK hearing in my AN side and am trying to accept the grieving process associated with knowing the hearing is going in a few weeks. (Surgery date not yet set).Dr. Gardner is taking an approach where he will cut behind the ear, and will have an ENT surgeon helping with the portion closer to the ear canal, while he will work towards the brain and they will meet in the middle. This appears to be the Translab approach?  But this is one of my questions for my next meeting with the surgeon.

The doctor informed me of the possible risks associated with surgery, Stroke, brain damage are the serious ones and then hearing loss, and balance loss while attempting to preserve my facial nerve.

I have choosen to loose the hearing over the facial nerve, as im only 26 years old. Both are important to me, but i felt that with society the way it is today, hearing was the least sacrafice.

I am concerned because alot of my life is revolved around hearing. My job, as social worker is all about listening to other people, and of course it is high stress.

Im looking for thoughts and suggestions about how to cope with the hearing loss possibility, how long recovery is and if anyone out there has suffered from anything very severe like brain damage or stroke infection, menengitis ect. during surgery

I know you are all great supports, I have choosen not to get a second opinion because I trust my doctors and feel the most confident with them right now, but Im scared to death. Ive never even broken a bone or been in the hospital and this is the most scary thing I have every had to go through and make decisions for.

Thank you all my AN supporters, I look forward to hearing from you all.

Sarah

[Cheryl R]

Sarah,    it is scary before the surgery as one does not know what will happen.     The chances of a stroke are very small esp due to the size of yours.     Brain damage also is very small as they are not going into the gray matter and I do not know your location but does not seem like it is pressing on the brain stem.      The meninigitis risk would be if you have a CSF leak which is still not high and make sure you ask your drs what to look for post op for a leak.   With a leak not everyone gets meninigitis       
The hearing loss is scary to think about.     In some ways it is not as hard as you think,   In others it does cause a problem.      I am now a retired nurse but worked for a long time with the SSD and got by.     You learn to make adjustments and when around people locate yourself so you can hear people.      You also can go for the BAHA or transear in time.        Most facial issues are temporary and one can learn more about that if does occur.     I have been thru that also.
  There may be some balance issues.    Your other side may have compensated already and one deals with that when see what you have.      Being able to soon get out and walk helps and taking some vestibular rehab if need be.   My biggest issue has always been outdoors or in malls.
  The first 3 days past surgery can be hard and don't count in recovery.    Then the first couple weeks one still is very tired.      One can not over push yourself as the brain and body need to recover.    One can't overdo to prove life will be normal again.    It will be and maybe with some adjustments.    In time the hearing loss can be the only issue.           I was back to work in 2 mos and that isdue to lots of walking on the job.       
The biggest thing right after getting home is no bending or lifting, possible weird taste or poor appetite (or maybe not)    The fatigue and lots of naps.     I always had trouble getting comfortable sleeping at night and did 2 beds and a chair for a couple weeks but it got easier.   Having someone to help with laundry and taking you somewhere and some cooking helps if you can have it.   
I hope it goes well for you and ask all the questions here you have.      You won't need much in the hospital but the lip balm and easy on pjs if you take some.    A robe to use when walking.   Loose pants to wear home if have the fat incision in the abdoment.                    I wish you well!
                                         Cheryl R

[Desilu]

Hi Sarah,

Cheryl made some good points and I would like to add a few myself.  It's OK to be Scared, I think just about everyone is! I am happy to know that you are confident in your doctor, that's very important. Hopefully he will have a wonderful bedside manner also. Every AN is different as I'm sure you know and so is each individual. Because you are young, you may bounce back sooner than most. As Cheryl said don't over do it. Give you body time to heal. I was able to go back to work after 8 weeks (full time), with little to no side effects. I don't know how soon you plan on scheduling your surgery, but if you call or email the ANA they will send you lots of information about the different types of surgery and the possible side effects. It's really full of helpful information. Also, they will send you a list of people on the "willing to talk list" if you would like to talk in person to someone. Keep a positive attitude and continue to gather information. Knowledge will help to calm your fears. You will get through this and we will help you! Hang in there, Ann  p.s. I'm on the willing to talk list. Email me if your interested.

[mk]

Hi Sarah,

I faced the same situation of failed GK not too long ago and I also knew that at that point surgery was my best choice. As you know from the forum, everyone's experiences are different, so it is hard to generalize.
I did want to mention about hearing loss: I am have had complete hearing loss prior to surgery, but that didn't prevent me from doing my job, which also involves a lot of interaction with people (I am a university teacher, and I teach in large and often noisy classrooms). So don't worry too much about the hearing loss. If you find that you can't cope with it, there are excellent solutions such as the BAHA. Regarding the facial nerve, you might want to discuss with your doctors the possibility of leaving some tumor if it is badly adhered to the nerve and see how they feel about this option.
Lastly, if your job is demanding and stressful, I would advise you to try to get as much time off as you can. That's what I did and I don't regret it. Even though I don't have major problems, I am still dealing with some annoying issues, such as neck/shoulder pain and I know it would have been very hard for me if I had to go to work every day.

Try to be as informed and prepared as possible and to hope for the best.

Marianna

[Kaybo]

Hi Sarah!

Being scared and anxious is VERY NORMAL and this is the place to come with your fears and questions!!  I was 25 when I had my AN surgery so I can TOTALLY relate to what you are going through.  Up front, I can say that I have a WONDERFUL life now (honestly, a little different than what I planned but wonderful none the less - besides, can you really plan your life?) - I went on to have 3 beautiful daughters and am very active.  My surgery was 15 years ago and medical technology has come SOOOOO far, I know that your results will be even better!  The hearing thing is scary but really is not that bad.  I do not and have never had anything to help with my hearing (but am looking at a BAHA now).  I went back to teaching at 3 months and definitely have become adept in positioning myself to be in the best places for my hearing loss.  I would be MORE THAN happy to chat with you on the phone if you have other questions or just want to talk...send me a PM with your info and the best time to call.

K   

[JAndrews]

I am a nurse and a mother of 2 small children. At work, my co workers have gotten used to my hearing loss. Most of them approach me and catch my face before speaking. I can't tell you that it has been easy, because it has not been. You do eventually get used to it. Some days more frustrating than others. I tried the transear..piece of junk. The hardest part is not being able to locate sound...that for me has never gotten any easier. My life has gone on and I am so thankful for every minute of it. My face is fine. BTW, there is more to facial paralysis than just the way you look..it can cause swallowing issues also. Make sure your surgeons will be monitoring this nerve during surgery. This is crucial. You are very young and don't want this nerve damaged. Always get extra opinions..just because they are surgeons does not mean they know everything.

[CHD63]

Hi Sarah .....

You already have some excellent replies to your post so I will not repeat.

I am in a similar situation as you, in that my first surgery in 2008 (via retrosigmoid approach) resulted in a regrowth of my tumor (very, very unusual but it can happen).  At that time some of my hearing was preserved and boosted nicely with a digital hearing aid.  When the regrowth occurred, I soon learned that I would lose the remaining hearing I had no matter what I did.  Since music is an essential part of my life, I knew I would not be a "happy camper" being SSD (single side deaf).  Therefore, I made plans and had the Oticon Medical Ponto Pro (bone anchored hearing assist) titanium abutment implanted at the same time as my translab surgery (7 weeks ago now) at HEI.  I am currently anxiously awaiting the day (August 4th) when I can attach the processor.  The Ponto will not necessarily give me any directionality but it will allow me to "hear" conversations from the deaf side ..... conducted via bone to the hearing side.

These devices are not for everyone but so far I have no regrets doing it all in one procedure.

Many thoughts and prayers as you seek answers/direction.

Clarice

[sarahinPA]

Thank you everyone for all of your encouraging words and supprt. I know that this is such a wonderful place to come and read adn even post when in need. Thank you for everything, and I dont think I would be getting through this as well without all of you.

My surgery date is tenative, it will be Huly 25 or 29th and I should hear back from the nurse tomorrow with the exact date. I have been trying to keep my spirits up, and for the most part I am doing well, but I still have bouts of saddness when I sit and think about whats to come ina  only a few short weeks.

Its hard to imagine that right now I feel fine, of course i have a few setbacks such as the facial paralysis and the slight hearing loss, and numbness in my face, but all in all i feel pretty good, so its hard to think that im going into major surgery and will come out feeling like crap! This is something that im having a hard time grasping.

I have great support from my family and friends and I couldnt ask for a better supprt group from you all too.

My doctor will be partially removing the tumor in a chance to preserve the facial nerve, since the tumor is already radiated, he said its tough to get it all off anyways without severe damage.

Thank you all again and I will keep you all posted

Sarah

[JAndrews]

AN's are tough to remove from nerves...but it can be done..thats why surgery time is really unknown until they get in there. I know this is a hard time for you...I was there. You are so young....I know this is my opinion, but here it goes......there is no reason for a surgeon to tell you he will leave some on your facial nerve......just because he is a surgeon does not mean he or she is the best surgeon for this type of surgery. When he/she is done with the surgery, you are the one who has the rest of her life to live. There is a strong/huge possibility that your tumor can be completely removed with no facial nerve damage. I know that you are in PA, the closest Dr. to you that I have researched thoroughly and was just as highly recommended as House Ear in LA, is Dr. Thomas Roland at NYU. I really don't want to upset you any more than you are....but..I promised myself that I would do as much as I could on this website to help others out there. I am a little over 2 1/2 yrs post-op and I am fine. Life is good....I must give my opinion when it comes to someone elses:)

[mk]

My understanding is that all surgeons will remove the entire tumor if they are able to safely do so (unless doing on purpose a "debulking" surgery, followed by radiation - I doubt this is the case here, as Sarah's tumor has already been radiated). But, some surgeons will remove the tumor entirely because they consider that this is the only "successful outcome", no matter what the repercussions are in terms of facial function, whereas others will leave a tiny sliver, in hopes to maintain nerve function.
I had many consultations (my tumor was also radiated ), and two of the surgeons told me in no uncertain terms that they will aim to remove the entire tumor. They also gave me 50-100% chance of facial paralysis. I ran away. The other two said that they would leave some tumor depending on the facial nerve response. The one that I eventually chose said that "he prefers to give his patients 20 years of quality life", even if there is a tiny possibility of regrowth. Indeed this is what he had to do, because as he was trying to remove the tumor from the facial nerve inside the IAC the EMG signals became sensitive (according to the surgical report). I ended up only with very slight (unnoticeable) weakness.
Sarah, I think that this issue is something that you must discuss and agree upon in advance with your surgeon. You should also ask what are the chances of regrowth if a tiny bit is left on the facial nerve, and if that tiny bit can be radiated again if needed (I have heard different opinions about this). Also you can ask what kind of monitoring they do for the facial nerve during surgery.
The most important thing is to feel comfortable and confident with your team. Use the time up to surgery to organize things, so that you can rest as needed afterwards. It is tough, but you will go through it and you will be on the road to recovery in no time.

Marianna