For the New folks

[cherrypiper]

I made a promise to myself to do this, so even though i have some issues with the web site;

This is for you new folks just wondering about AN's  and what can happen:.......and please note right from the first i would do it all again. This isnt to scare any one. Just what can and does happen to folks.

I had my AN diagnosed in July 07. I had gone in for a hearing test after finally getting insurance. I knew i had tinnitus and that my hearing on the right side was poor. What they found was i was SSD , single side deafness. i  had NO hearing left over there. So of course they did an MRI and found my neuroma.

Go get a big almond. That was the size and really close to the general shape too of mine. It wasn't threatening my brain yet, wasn't causing anything but the common symptom of poor balance (listing to the right the more tired i got) and the deaf part. 

I am in Houston Texas and we have a wonderful place called the Medical Center. My Ear Surgeon told me all about what he was going to do and sent me to the "Bone Cracker" , lol, the Surgeon who opened up the skull for the Ear specialist to do the actual removal of the tumor.

I ruled out gamma knife, as it wasn't a finite enough solution for me. If it didn't work, i was told, after a 6 month wait and another MRI, they would do it again, wait again, another 6 months another MRI. If it was still growing or wasn't "dead" then we go in and remove it.

The percentage of its effectiveness was quoted as 85% ish to 95% effective.

I was 56 when i had the surgery done on December 3rd of 07. My age was one of the reasons i went ahead and had it done. No major surgery, and make no doubt drilling / sawing a small whole in your skull is major surgery, improves with age. I am a College professor and had all of December and into 2 nd week of January off. So this seemed to be a good time to do it.

1. They got it all. i have had 2 MRI's since and no traces have come back. This IS NOT life threatening surgery. and 95% of these tumors (neuromas) are NOT Cancerous. Mine wasn't by the way. My surgery took 7 hours to do.
2. i was in ICU for 2 days, ACU for 1 day , regular room for 1 day and then home.
3. They took "fat" out of my tummy to place in the surgery area to soften any shock made until all could knit back together. 8 surgical staples worth . maybe a 2 to 3 inch incision right under the belt line on  my right side.
4. They have to put in a spinal tap on the bottom of your spine. This allows for the brain fluids to exit instead of swelling in the brain. This thing hurt for 4 days more then anything. That was another 3 surgical staples.
5. They gave me what they called "morphine light". A synthetic with much the same qualities with out addiction problems.

This basically , for me, numbed me from head to toe and left me like phasers on stun .

6. They give you steroids , cause you need to work on bone development as they cut some out. They used injections for me to also take home for this.
7. Got home and was completely under for the 1st day home . i didn't wake up for 18 hours.

YOU WILL NEED HELP AT HOME FOLKS.

I had a hard time with balance. I couldn't walk to far on my own without a wall or my wife to steady me. Forget up and down the stairs into our apartment. I don't know how my daughter and wife got me UP those stairs to begin with but they did.

8. I was tired a lot. 
9. Going to bathroom was a challenge for a week or two as well. Simple task made harder by what they give you b4 surgery.
10. And of course all sorts of meds for home.

Ok now the BIG DEAL for some of you. and really why i write this at all. Before you have this surgery, if its NOT threatening your brain or you have some hearing to save ( I didnt) think this over.

I would NOT recommend this surgery for any young lady under about 45 years old. My surgeon , the bone variety, was clear about why but it didn't "hit" me until after.
These two words are PARAMOUNT for you to understand.

FACIAL PARALYSIS.......... yep its on that long list of side effects. and its a BIG deal. See they scrape your tumor off and the 7th and 8th nerves, facial and acoustic, are side by side.

I came out looking like a small stroke victim on my right side. Face had dropped about 1/2 inch or so from forehead to throat. Eye lids, mouth, on the nose, cheek.

To simulate this go to the mirror and pull down your face about a 1/2 inch at the jaw bone.

My forehead 3 yrs post op still is flat , will never wrinkle like my left side. My eyebrow is lower. my eyelid is drooping down about 1/4 inch now. i CAN NOT SMILE on my right side AT ALL. I cant suck on a straw either, right side of face gives in. muscles don't work.

Your eyes blink all the time without our doing anything. My right one doesn't blink. i can hardly wink it still. This means I have had to learn to BLINK my eye on my own several times every few minutes. My eyes dry out so i have to use eye drops  all the time. I can't go into sunlight cause my rt eyelid and blinking doesn't work, so i wear sunglasses even on cloudy days. If I want to take a nap in the afternoon , i have to wear an eye patch cause the lid doesn't go down all the way. At nite, its not an issue.

I had dentures. They had to be redone on the uppers. See i have no control over my lip area. The muscles there don't work.

Shaving is harder. no tension on the whole right side. Lip area is shall we say a challenge  lol.

Now are these big deals here? Maybe , maybe not .  i have adapted for sure. The tumor is gone, it wasn't cancerous.

Here's the deal too. I belong to a ANA support group here in Houston. We have 10 to 12 folks like me who have had the surgery and 2 to 4 who have had gamma knife. Gamma knife doesn't seem to have any facial issues at all.

All but 2 of the 10 to 12 surgical folks have WORSE  FACIAL PARALYSIS  then i do. And 1 of those 2 said she spent 10's of thousands of dollars on face lifts to correct her face.

SO if i were a young lady, really happy with my facial side of things?

i'd really postpone this surgery unless it fits those 2 criteria of mine, brain or hearing saving. 3 years post op and even my regular Primary Care Dr. sees things have gotten a little worse as the muscles atrophy completely on my right side. Small stroke is how it looks.

ok thanks for letting me type in.

[leapyrtwins]

Cherrypiper -

good to see you again and thanks for posting your experience for others to read.

I have to respectfully point out for those "new folks" you refer to that this is just your experience.  Lots of us who had surgery had different experiences.  For example, I did not have a spinal tap placed during my surgery, nor did I come home from the hospital with lots of meds.  The only "med" I took at home was an over the counter stool softener.  I didn't experience any numbness from head to toe; the only numbness I had was my skull and left ear (my AN was on the left).

By your definition I wasn't young at the time of my surgery, I was 45 1/2, but I don't see the relevancy of age when you are talking about facial nerve paralysis.  I, thankfully, didn't have paralysis except for a day or two post op, but I'd imagine it's challenging at any age.  I also want to stress that facial paralysis isn't a "given" of acoustic neuroma surgery.  Some have this side-effect, some don't.

In my opinion, one of the most important things an AN patient can do is choose the treatment that is right for him/her.  It's a highly personal decision and what's right for one isn't necessarily right for another. 

I'm sorry to hear that you, and others in your local ANA group, have had continuing issues after surgery. 

My surgery was in May 2007 and I've been back to normal for a long time now.  The only "non-normal" thing about me is that I'm SSD, but in my book that's a minor disability since I have a BAHA which greatly improves the situation.

There is definitely life after an AN - whether one chooses surgery or radiation - and I don't think I'm alone in my opinion that that life is pretty darn great.

Best,

Jan

[Cheryl R]

Cherrypiper.              I have to agree with Jan that not all of us have had the same experience as you.       I never had a spnial tap any time and I have had 4 surgeries due to NF2 and 3 tumors.      One was a facial neuroma with a nerve graft at the same time.   Just to look at me you would not know I had facial paralysis for over 8 mos which was expected.     I do not have full movement but get by with a closed mouth smile and my eye works.    Some occ dryness but drops are not used every day.     I do gel at night.
I also had paralysis for 3 1/2 mos after my first AN.     For many the paralysis is temporary.               I was up and walked on my own after every surgery.    I had an off balance feel esp when went outside.    Have never used cane or walker.        I did take some pain pills for general post op aches but no bad headaches.   Only steroid once at home.                    I have know others who are not on here who have done about the same.        I feel for those who do have long term issues.           The tumor size,location and the damage it has done and a surgeons experience and how ones body is able to compensate post op plays a part in it all.            I have some balance issues under certain conditions due to having had surgery on both sides now and no balance nerve on either side.    I still amazed the PT and Dr by getting up and walking just like before.
   It is frustrating for one pre treatment that one does not know exactly how it will be post op.       We all do vary.         Some young or old also can have mid fossa for a smaller tumor and save hearing.    This varies too,       I had no facial paralysis after my last surgery and was near all deaf and I had the unusual happening of hearing improvement on that side so no cochlear implant was needed.    I am deaf on the other side.           I was 49 at first surgey and now am 58.        I was back to work as a nurse in 2 mos but retired just before the last surgery.       
      Have you thought about trying to see a facial therapist?              www.bellspalsy.ws has some info on facial  issues.       We know of a good one in Madison.WI but there might be one closer to you.         
             It is not easy when it all does not end up as one hopes and sorry that this did happen to you.           
                                                           Cheryl R                   

[nteeman]

Got to add my $0.02 as well.  I went in to the hospital on a Tuesday and home by Friday. I was up and walking around a day after surgery. Balance issues were very mild and while I am not 100% I would consider my balance around 95%. I am SSD but no facial issues.  During my hospital stay they did 2 spinals to keep swelling down. My AN was 2.6 CM X 2.0 CM X 1.6 CM. I was 57 yo at the time of my surgery.  While your experience was very real and something similar can happen to anyone who has AN surgery so was my experience and the chances of a similar result as mine is very possible.

The best advice I can give to someone who is diagnosed with an AN is to do as much research as possible and then go with what they feel most comfortable with.

Happy Holidays

Neal

[Jim Scott]

Steve ~

Your account of your AN surgery is appreciated for it's candor but I have to remind those 'newbies' reading this thread that, as we so often state, every AN patient's experience is unique in some way.  You suffered some facial paralysis and this is daunting but your experience cannot be taken as the absolute norm for every AN surgical patient, as I hope you would agree.  I underwent debulking surgery for a large (4.5 cm) AN in 2006, at age 63, and had no facial paralysis at all nor the need for a lumbar drain.  While I'm thankful for my experience, I don't assume that every AN surgical patient will have a similar outcome, although some, such as Jan, do.  Facial 'issues' are a definite risk of AN surgery but not a given.  Radiation treatment also carries risks. These are unavoidable and surgical outcomes are determined by a variety of factors including the surgeon's AN removal experience and innate skill as well as a certain amount of sheer chance, I suppose.  While your post is based on fact, you're describing your experience.  That is valid and your cautions are accepted but your facial issues post-op are not the template for every AN surgical patient, young or not-so-young, male or female.  Suffice it to state that AN surgery is a risk.  That is why we strongly advise potential surgical patients do the research and be fully confident of their surgeon's expertise.  I was - and my confidence was amply rewarded.  I wish every AN surgical patient had a similar experience.  Thanks again for your information and I truly hope that your facial issues are eventually resolved.

Jim

[PaulW]

According to ANA's 2007-2008 Patient Survey 40% of patients who underwent surgical removal have facial nerve problems.
I think it is important for all newbies to fully understand the risks of all procedures. W&W, surgery, radiosurgery.

AN surgery is major surgery, it should not be taken lightly.
While there are many good stories with surgery, there are many poor stories too.

I think we need to be very mindfull of the risks and the poor results that surgery can bring as well as the success stories

[james e]

I was 61 when I had my surgery done...in Houston at Methodist Hospital. Translab...SSD...BAHA...no facial problems...minor balance issues...just had a root canal done, and I would rather have the surgery done again than have  another root canal. Everyone's tumor is different, and we all have some type of disability following the surgery, radiation treatment or doing nothing at all. It's just part of your life. I just had a stroke and heart surgery right before my surgery, and tomorrow I'm having cataract surgery...it's just part of growing older. But I don't whine about it. I try to encourage people to just accept this as part of your life and don't let any of this get in the way of enjoying your life. I'm picking my one of my granddaughters up after my surgery (with my wife) tomorrow, and we're going to do some kid stuff. Dang...have some fun!

[cherrypiper]

Jan, Jim and Cheryl. Your "oh its all going to be ok and come up rosie" shares do i believe a disservice to the new folks contemplating this surgery.

just for the record.......

1. i went to the Medical center here in Houston, had a wonderful surgeon who does several of these AN surgeries every week. he was highly recommended down here, named Dr. Chang.
 
2. i had a very efficient , straight forward, bone cracker surgeon, he was the head of the Memorial Hermann surgical teams for AN's. He's now at John Hopkins doing the same thing.

3. The AN teams have their own operating room JUST for this.

everything was as good as it could get here in Houston Tx.

4. Facial paralysis happens to 40 % or so someone said earlier. It happens cause until the surgeons get in there and then "scrape" the tumor off the acoustic nerve, one doesn't know what will happen to the right next door facial nerve.

To say , well we have plenty of folks who don't get it and thus lets keep putting out "touchy feely"" it will be ok shares", seems to me to be doing a disservice to those looking in for help.which is why i haven't been here for about 6 months.

My story is different then the long time powers that be folks in here, but it is i hope worth bringing up for the new folks.

 I was an Engineer once and while the 10 to 12  folks is way too small a sample of AN's in Houston, 8 to 10 of them having facial issues worse then mine is approaching 80+ %.

It is what it is for sure................somehow i had hoped that since i haven't been here for 6 months  or so, i wouldn't have what happened to me minimized again as to  not worth being told in this forum here.

[Cheryl R]

Cherrypiper.     I will add that I was not trying to mimimize your post op issues but that the way it came across as it was written that many or most people who have surgery will end up with the issues you have went thru.     I only was saying that it may not and all new ANers need to be aware of this.          One does not know how it may end up pre op.     The tumor location,size and what it has done to the nerves already plays a part in it too.  I have come across a few who did not have an experienced surgeon.               Those who have the most problems are frequently the ones who stay on forums and may go to any support groups in hopes of wanting support and possible help for their particular issue.      I am now over 9 years from my first AN and 2 yrs later went on to find the one on the other side and show that I am NF2 so I have been around this whole experience for a while and have got to know many ANers here, ones who I have met personally who also had surgery at the Univ of Iowa where I am lucky to also have a very good neurotologist.     I have been to the last 4 symposiums which has pre and post treatment ANers.             Each person who has this frustrating tumor that does change your whole life in either small or severe ways has their own experience from then on about knowing others with this also.                    How one adjusts also may depend on your own personality and how one copes with a change in ones life.       Having been a hospital nurse for 23 yrs total I have seen that with all types of illness and how one handles it.   
   There are some ways that can aid but not cure ones post op issues.    Finding this is not always easy for all or within their income and insurance limits.    Also what is available close to them.     
          We want to have all here on the forum to have what support is needed.          I hope you continue here and stay with us.
                                                         Cheryl R
                                                       

[Kaybo]

Cherrypiper-
I have been sitting back & watching this thread with great interest. I'm very glad that you felt strong enough to write you very candid thoughts - thank you - I know that is not always easy. HOWEVER, is it not OK for someone else to do the same?  I've read all of this and didn't ever get the impression that anyone was trying to "minimize" your opinions or experiences. Newbies do have a right to know BOTH sides. I feel like I have a right to say something since I DID have pretty much the worst case scenario (even a stroke) & do have facial paralysis. I agree with Cheryl (who has certainly been thru MULTIPLE surgeries with NF2) that usually the people that seek out groups & on-line support are the ones that have had more trouble.I don't consider myself a "power" around here but I have been here for a good while.  I choose to stick around to try to help others - I don't think that everything does always come up rosy but a GOOD ATTITUDE sures goes a long way in the whole recovery process. My life for the last 15 years certainly wouldn't be what it is if I had chosen to dwell on all the was "different or wrong" with me now. There's a great big world out there & a LOT to experience & I am going to do the best I can to live it to the fullest - in whatever way I can!

K

[Mickey]

Good advice! Way to go Kaybo...Best wishes, Mickey

[Mark241]

Giving others' hope in times of dispair, is not a disservice, It is what I, and many others' seek out, be it prayers', or others who have shared the experience. Although not all of us share the same religious beliefs, nor, the same outcomes' of surgery, I truly believe that each of us, in our own way, offer hope to everyone.         

[Syl]

Cherrypiper:

Around this forum there is an emphasis on how unique each AN patient's experience will be. We are not doctors and can not say how others will turn out after treatment--even doctors can't tell us for sure. All we can do is tell our story & hope that others can benefit.

Your sharing your experience provides more info. for newbies researching their options. It is important information. The more personal stories available, the better they can weigh their options.

In response to something you mention,

Ok now the BIG DEAL for some of you. and really why i write this at all. Before you have this surgery, if its NOT threatening your brain or you have some hearing to save ( I didnt) think this over.

I would NOT recommend this surgery for any young lady under about 45 years old. My surgeon , the bone variety, was clear about why but it didn't "hit" me until after.
These two words are PARAMOUNT for you to understand.

FACIAL PARALYSIS..........

I was 40 when I was diagnosed. I was very concerned about facial paralysis, but after extensive research & several Dr's opinions, I opted for Retrosig in the attempt to save my hearing, but putting my facial nerve at risk. I lost more of my hearing & had slight facial weakness. My face recovered 100% within 3 weeks, but my hearing hasn't.

I chose to have surgery because I wanted the tumor out right then & there. One neurosurgeon told me that the tumor doesn't need to grow to cause damage. Inflammation alone can cause further damage. The way I saw it was that the longer I waited, the more complications I could have with treatment. So I got the tumor removed.

My biggest issues since surgery have been the chronic headaches & the major wonky head. I'm 2.5 years post-op & would like to put this whole experience behind me. But it is difficult when my wonky head reminds me all day long about it, when I have to ask folks to repeat themselves constantly or when I get a headache. If I wasn't waking up with a headache at 3 a.m., then I was sure to get one later if I tried to pull weeds or pick up anything from the ground.

So often I have felt that I'm never going to feel better. But it has gotten better for me. I'm winning the headache & wonky head wars. Maybe time is the biggest factor, but I'm sure that my constant attempts to defeat the chronic headaches & chronic wonky head are helping. I will never be 100%, but life after treatment can be be a good life.

Syl

[amysga]

As a newcomer who has yet to decide on treatment, I so appreciate the willingness of everyone to share their experiences.  We newbies do realize that every person and their outcome is different.  I, for one, want all the info I can get, and I mean all.  This forum is the only contact I have.  The first neurotologist I saw has yet to acknowledge my three requests for him to put me in touch with a patient or patients of his who have undergone surgery.  One of his staff members told me he would contact the "families" of the patients and see if they would contact me.  The family?  What about the patient?  The survey has been tremendously helpful, and equally terrifying, with the stats presented on post op issues.  I also sincerely appreciate and admire the positive attitudes and words of support and hope.  I am truly happy for the success stories and for those of you who have handled the not so successful outcomes with bravery, humor and determination.  I am tremendously thankful for Cherrypicker's candor and honesty in expressing his experience in dealing with this.  So, bravo, Cherrypicker, for telling us your story. 

[Kaybo]

Amy-
Iwould pm you but for some reason, Pm's wont send from my iPhone. I guess I'm not a patient of YOUR Dr, but I'd be more than happy to chat with you. You can pm me a number & good times to call if you'd like!

K