Stage 2 Surgery Scheduled

[msuscottie]

Hi All,

I have just scheduled the second stage of my AN removal. My first surgery was in October of '04 of a 3.5cm AN. my next surgery is scheduled for Feb. 1st to remove the risidual tumor. I had a rough time with the first surgery because the tumor was embedded in my brainstem. This time around, most of the life-threatening stuff is gone, but the major risk is to my facial nerve as the risidual tumor is somewhat embedded in that nerve. My face is still numb from my first surgery, but it is not droopy and I can still blink (but not produce tears). Can anyone tell me about their experience of waking up with full facial paralysis? I'm freaked out at the thought of it, but I'm trying to fully prepare myself because it almost sounds inevitable with this next surgery. Thanks for any help or info you guys can provide, I appreciate it.

Scott

3.5cm AN removed 10/7/04
Providence Hospital, Southfield, MI
Dr. Pieper & Dr. LaRouere

[Jeanlea]

Hi Scott,

I had a 3.5 cm tumor removed in September.  My facial nerve was wrapped around it.  Very sticky was how it was described.  I woke up from surgery with total facial paralysis and loss of feeling on my tumor side.  It wasn't what I was hoping for, but I can live with it.  Only a week ago I started to get a tiny bit of movement.  (Which feels like a lot to me at this point in time.)  I remember reading on here that it was helpful to say the ABCs to help.  I did that while I was in the hospital.  Talking was challenging at first, but the more I did it the easier it gets.  I'm a teacher so I talk a lot. 
Eating is another challenge.  I still end up with Cheerios on my face, but I've progressed to the point where I can now drink the milk out of the bowl.  In the beginning everything I drank came through a straw.  Now I can drink out of a glass.  I just sort of hold my lip.  Napkins are also helpful, especially with any kind of sauces or creamy foods.  It hasn't been that hard for me to eat.  I've gained weight.   
Once people see  you the first time they get used to how you look.  It's not that big of a deal.  Just kind of annoying.  Even though I don't have a whole smile people can still tell when I smile.  In fact, my students (third graders) are great at reading my face (especially when they have been fooling around lol). 
Hope this gives you some help. 
Jean

[Kathleen_Mc]

Scott: Are you expecting full facial paralysis? Shouldn't it be just the one side? Anyway I wasn't even aware of this when I first woke up from surgery, I wasn't aware pre-op that it could happen (no time for pre-op questions and education and/or I was so stress I didn't comprehend what was being said) and I was so swollen in my face I could have moved it if I had wanted to anyway. What did it feel like once I was aware and the swellening deminished? It felt like I had been given major dental freezing on that side.
I wasn't initally upset about my face because I was just glad to be alive, it set in around 4 weeks post-op and I was very depressed about my appearance. Over time I have had many plastic repairs to my face to compensate for the loss of function of the facial nerve and I have adjusted to "the new me", I have developed a healthy attitude towards my appearance and hey if someone doesn't like the way I look that's thier problem and they shouldn't look at me then.
Kathleen

[Kathyaquino]

Hi Scott

I had a small tumor removed at Stanford (it was supposedly about 13 mm), and I was told by my doctor that there was NO WAY I would have any complications from the tumor removal let alone complete facial paralysis.  When I woke up from surgery my head hurt pretty bad, but I found that I could barely talk and that my eye wouldn't close.  As soon as the anesthesia had worn off significantly I realized that my face was completely paralyzed.  It was a shock, but since my doctor had never discussed paralysis with me, I didn't really know what it meant.  I had also had an ENG done previous to surgery which supposedly showed that there was no facial nerve involvement with the tumor.  I have since been told that the results of that test meant nothing.

Anyway, you still function even when your face doesn't work.  My family and I were told by my doctor that my face would be perfectly normal - first he said in a year, then he said in 6 mos.  I would cry a lot (I always do) when I'd try to talk too much because after a while the words just didn't come out right.  My eye hurt worse than anything - it seemed like nothing they put in it could make it stop hurting.  During all this time, though, I was just waiting for the 6 months to go by so my face would be normal again.  Of course that didn't happen.  However, everyone is different & everyone's nerves heal differently.  Although my facial nerve supposedly wasn't severed, I have ended up with a very lopsided face.  I can no longer smile & pictures are horrendous.  I tear them all up.  My eye does close most of the way by itself, so I'm lucky in that respect.  I recently saw a picture in the acoustic neuroma monthly newsletter of a woman whose facial nerve was cut & sewn back together & I thought she looked wonderful.

The main thing is that you go on with or without a normal looking face.  I think in the beginning you're just concentrating on getting well after the surgery & then you start looking for any little extra movement in your face.  It takes a while for the full impact of what facial paralysis means to hit you.

So even if you wake up from surgery with facial paralysis you just have to wait & see how much it's going to heal.  Hopefully you'll wake up with a big smile on your face & that your facial nerve will be fine & your tumor will be gone.

[Windsong]

Scott,

I don't know about surgery like yours but wanted to say never say "inevitable".... good things can happen i do believe.

Keep your spirits up, I am sending you good thoughts and loads of good wishes.

[msuscottie]

I've had three different Dr's tell me that radiosurgery would not be a good option because of 1) the location of my tumor (Up against the brain stem, embedded in the facial nerve, 2) My age, I'm 30 and FSR typically stunts the growth of a tumor but doesn't elminate it. The chances are good that even with high doses of radiation, the tumor could still grow back down the road, 3) recent studies are showing a 2-3% chance of malignancy from radition treatments. I think the main thing is that radiation doesn't get rid of the tumor, it simply stunts it's growth. At some point the tumor will start searching for blood sources again and will pull blood from wherever it can in the brain, blood that is essential for other parts of the brain to work. I'm going to go into another surgery and hope they can just get rid of this thing for good.

Stage 2 surgery simply means that I'm having 2 surgeries to remove one tumor. I had a very large tumor and the safest way to remove it was to do it in two stages. The first stage was done last October in which they removed the portion of my tumor embedded in my brainstem, the second stage will remove the risidual tumor from the ear canal and facial nerve. They will also use a different approach for the second surgery.

Thanks for your support everyone, I appreciate it!

[Mark]

Scott,

In reading your post I'm going to guess that none of the three doctors you consulted with are neurosurgeons who actually practice ( or apparently understand) radiosurgery. It would be very surprising for me hear otherwise. The information that you were given reflects the classic "myths" that some surgeons seem to perpetuate either through ignorance or deliberate attempts to mislead patients. The desire to just "have it out" is the most compelling reason to go ahead and have the second surgery and I most certainly support your choice in that regard.

Given that many others read these posts, I would make the following observations on what these doctors told you about radiosurgery in general.

1) all AN's start in or around the IC and expand out into the cerebelpontine angle. If they get large enough they begin to compress on the cerebellum and ultimately to the brain stem. In your case, you have already had a debulking procedure which should mean that the residual tumor is only around the IC area where the cranial nerves are involved. I'm confused why they would have left any tumor anywhere near the brain stem at this point

2) Since AN's typically grow from the schwann cells of the 8th cranial (hearing) nerve it is always in the tumor. The facial nerve( 7th cranial) ,due to its proximity in the IC, is virtually always involved with the AN, either embedded in it or wrapped and stretched around it. In radiosurgery, both of these nerves will receive radiation along with the tumor. The normal DNA of the nerves tends to withstand the radiation better than the abnormal DNA of the tumor. Historically, based on preservation statistics the facial nerve is more tolerant  than the hearing nerve probably because of the small hair like fibers that the hearing nerve uses to transmit sound. The development of the fractionated approach ( FSR) in the last 10 years came about in an effort to improve preservation rates. In general, the most recent studies put facial nerve at about 99% and hearing at about 75%

3) The goal of radiosurgery is to kill the tumor and stop it's growth completely , not "stunt it's growth". The biology of the treatment is to destroy the DNA of the cells so that they can not replicate. If that is successful, then dead cells don't seek out a blood supply. If cells are left alive then they would seek out a blood supply as a source of nutrients. Radiosurgery has been used to treat AN's since 1969 and the current failure rate in studies is around 2-3% over that period of time.

4) There are several posts in this forum's archive addressing the fallacy of the mailgnancy issue. When the studies which involve radiosurgery , not whole brain radiation are quoted, then the "rate" of transformation falls below 1% and is , in fact, statistically the same as surgery for AN's.

Again, my comments here are intended to address what I consider to be misinformation on radiosurgey in general for the benefit of other readers. We all have to come to peace with our treatment choice which you have done and I wholeheartedly support your decision and wish for you the very best outcome

Take care , Mark

[debora]

Mark,

I am really glad you posted on radiosurgery.  I read comments on tumor growth after radiation, and the problems removing a tumor after it has been radiated and it scares me sh--less.  I know better because I have read articles that say different, but everytime someone posts their findings or beliefs I get terrified all over again.  I wake up at night and am awake for hours with fear, I wait for the other shoe to drop, what next   I have to believe I did the right thing for myself, I haven't always thought so and it is really hard to live like that.  Thanks for helping to put my mind at ease.

Happy New Year's to all,  Deb

[wind6]

Hi Scottie, You may have read some of my previous posts and already know that my tumor originated from my facial nerve so damage was inevitable. However, when I woke up in ICU  I was able to smile at my family and I could hear perfectly. After a few hours I began to lose my hearing and my facial movement. It didn't hurt or anything...the best way I can describe it was that I felt like I was melting. I remember reading one of your posts about how your self-esteem took a hit after your first surgery, well I feel the same way. I hope that you will realize that there is also a chance that you will NOT have paralysis or that if you do, it doesn't mean it will be permanent or severe. I am almost 6 months post op and have had slow but continuous improvement. When I left the hospital I was a 6 on the House-Brackmann scale and was told that it would be forever like this because my facial nerve was so damaged. I am now a 2 on that same scale!!! My eye is what bothers me most and even that is slowly getting better.
Scott I know you have to be afraid but please hold on to your hope and try to find positives to hold close. You might even come out of surgery better than you are now...I have read stories that have that kind of success.
I usually don't share these truths about my life but I am going to now. I am a single 50 year old woman, reasonably attractive,(most people guess me at mid-thirties), I am quite petite and have always been a bundle of energy. When I came home from the hospital my boyfriend of a few years came to see me one time........he left my life because as he put it " he couldn't take looking at me"! Talk about a blow to the ego. Anyway, I am sharing this so you might understand when I tell you I met a new man 4 weeks ago and he thinks I am beautiful. He says my slightly crooked smile is very charming.. . At almost 6 months post op I am dating, going out to dinner, dancing (slightly wobbly but still dancing) and I have discovered that true beauty and worth can not be measured by external appearance.
I truly hope that something you read here with give you peace and encouragement. I also want to thank Mark and others like him that show us all a different approach to treatment besides surgery. I am glad that I personally didn't take that route because of the location of my tumor but, its great to be totally informed of "all" treatment options.
Deb I know how you feel when you have fear and doubt about whatever treatment you have chose. I do the same "what if" thing in my mind all the time. However, I am now at peace with my choice and am determined that the rest of my life will be better because of the lessons I learned in such a harsh way.
Okay....I will shut up now. 
Much love to you all and all the best for this new year.         Sherry

[gemaste]

You have a great story.  Hope things are going well.  Happy New Year.  I guess we have five months behind us.  Glenn

[okiesandy]

I totally agree with Mark,

I was sched. to have Trans Lab at HEI Nov. 8th 2005. After battles with my insurance I knew I would not make the date. We were finally approved for a reduction in benefits and with that we could have managed the cost of the surgery or gone with the cash discount rate. In the mean time I took a serious look at radiation. I had passed this up due to many myths that circulate and my complete misunderstanding of the facts

I did a complete turn around and will have CK. At my appointment with the radiation oncologist I was shown the difference between the information published about radiation to the whole brain and the high doses of the past and the lower doses that are used to pinpont the AN today. That is apples to oranges. In fact there is NO evidence that GK has ever caused a benign tumor mutation or cancer in any part of the brain or any place else. The ratio is more like 1:20,000 or the more conservative 1:1000 possibility. In fact there are less than 7 possible cases world wide according to several studies done.

Thrusday I went to the neurosurgeon who will coordinate with the radiation oncologist to do my CK. For many years she did and believed only in surgery for AN's and still thinks it has it's place. She was not the scare monger the neurotologists have been. She said if she or any member of her family or a friend had a an AN that was not pressing on the brainstem and was less than 3 cm she would go the CK or GK route regardless of age. She said the benefits are no dry eye, less than 1% facial paralysis and she had never seen nor heard of it being long term. As for cancer she said she would never say never, but it is very remote. There are many things we do in our life that are more likely to produce cancer than this. The object of radiation is to kill the tumor and that is done between 97 & 98% of the time. Hearing preservation 70 to 85% depending on circumstances The only difference MAY be in the area of balance. The brain MAY adjust better if the balance nerve is removed. And the other is the delayed reactions to radiation vs immediate with surgery. By the way no pressure to lead me to a particular kind of treatment surgery or radiation from either doctor. All options were open to me.

There is another neurosurgeon in her office that also does both surgery and radiation and I know from 2 other ANers that he believes that surgery will become obsolete for almost all Acoustic Neuromas in the future. FYI: One went the surgery route and one the GK route.

15 year control rates for GK and 5 year CK are out. And they look very good. I think we are getting our wills, woulds, coulds, mights and mays mixed up. I might, may, could be, but not sure if I will or would be struck down by a garbage truck today. The treatment decision is a difficult one for most of us. At least the people who post or lurk on the forums and do research on the internet. Which by the way IS very few of the total ANers out there. I don't think anyone is ever really 100% sure and comfortable that either way is the correct way to go. I agree with Mark, go to one who does both. that is the best possible chance for correct information. Pray for a cure and then we won't have to make these decisions.  I am now off my soap box.

Many Blessings, Happy Times and Good Health for the New Year

Sandy