For the New folks and those on the "wait" till later list

[cherrypiper]

I made a promise to myself to do this, so even though i have some issues with the web site; And yes its pretty much same as last year.

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 2nd week of January off. So this seemed to be a good time to do it.

1. They got it all. i have had 3 MRI's since and no traces have come back. This IS NOT life threatening surgery. and 95 to 99% of these tumors (neuromas) are NOT Cancerous. Mine wasn't by the way. My surgery took 7 hours to do. Now they told my wife  for each hour you are under , you need a month to regain "normalcy". Mine actually took longer then that to see the "new" normal.

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.The removal of those staples was more hurtful then anything else except the wound in skull itself.

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. My wife drove me places for a few weeks. Folks stopped and asked her if i had had a stroke. I didn't look good all in all.

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.

 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.From what i can tell here in the Houston AN meetings and such and what i glean off this site, 20% ish of us have facial issues after surgery. And please let's not argue about is it 20 % 15% or 25%. Its more then just a few. And probably the main reason you wont get many references from surgeons of folks to talk with.   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.My forehead , eyebrow on the AN side still do not move at all 4 yrs later. Eye lids, mouth, on the nose, cheekdont appear normal either, but maybe not as bad as 4 maybe 3 yrs ago for sure.

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

 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 your 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.

i'd really postpone this surgery unless it fits those 2 criteria of mine, brain or hearing saving. 4 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.The folks on here with Global status say i am negative. Nope Just want the room to have an idea that this isnt for all of us, cherries .......I only post this yearly to give some information and guidance to those that may need it.

[Jim Scott]

Hi, Steve ~

Thanks for your comprehensive post relating your AN surgical experience and the issues you've had to deal with.

I hope you'll find some improvement over time and consider facial reanimation surgery and/or facial therapy, which have shown excellent results for many of our members struggling with partial facial paralysis. 

I have to caution those reading your post that although we appreciate your frankness, as we always caution newly diagnosed AN patients: one AN patient's experience (surgery or radiation) does not serve as a template for every AN patient.   Facial paralysis is a paramount concern for all AN patients.  It was for me.  Upon diagnosis, the MRI scan showed that my tumor was large (4.5 cm) and pressing hard against my brain stem.  Surgery was my only option and the sooner, the better.  However, my neurosurgeon (no ENT physicians were involved in my surgery) had decades of successful AN surgery experience and because I emphasized the point that I very much wanted to avoid facial nerve damage, he presented me with a plan to 'de-bulk' my AN, sever it's blood supply then use FSR to destroy the remaining cells.  Long story short: it worked.  Everything went according to plan and I suffered no facial nerve damage - or anything else of any consequence.  I never needed a lumbar drain and my neurosurgeon used titanium mesh, not belly fat, to seal up the incision in my skull.  I was driving again, with my doctor's approval,   less than 2 weeks after my surgery.  90 days after the surgery I underwent 26 'fractionated' radiation treatments and again, had no side effects at all.  I drove myself to and from each FSR session (approximately a 60-mile round trip, 5 days a week).  This all took place in 2006.  My last MRI, in 2008, showed tumor necrosis and the beginnings of shrinkage.  I feel great (at 68) and don't expect to have another MRI scan until sometime in 2013. 

However, my AN experience, as good as it was, cannot be held up as the norm....and I don't.  Just an example that it is far from axiomatic that every AN surgery patient suffers some grade of facial paralysis or has to deal with other vexing issues.  Again, adhering to the AN discussion forum tenet that AN surgery (and radiation) carries inherent risks but each AN patient is unique and doctors vary in their expertise so one persons experience - good or not-so-good - is not the 'standard'.  Obviously, we attempt to assure 'newbies' that they need not assume the worst possible outcome from surgery (or radiation) but that many of us do fairly well following this serious surgery.  However, we never claim that someone anticipating AN surgery has nothing to worry about.  That would be disingenuous, at best and cruel and misleading at worst.  As a support site for AN patients we attempt to be both realistic and optimistic. 

We each hold an opinion regarding AN surgery based on our experiences, positive or negative.  The ANA doesn't censor anyone for posting an opinion based on their experience.  We simply remind forum readers that cheerful accounts of a relatively 'easy' surgery and no post-op issues are subjective as are accounts of folks suffering with long-term, possibly intractable post-op complications.  Of course we want to see the very best outcomes for every AN patient and we lean toward the positive because, frankly, those who have satisfactory outcomes to their surgery or radiation usually stop visiting/posting because they have no need of support.  That leaves those of us who chose to remain active on the ANA discussion forums the task of reminding the newly diagnosed that, as in my case, there is light at the end of the AN tunnel.   

That having been stated, I appreciate your candid account of your AN journey thus far and I hope you can find some relief for your facial deficits in the near future.

Jim   

[deheisel11]

Cherrypiper,
I don't think that I could respond to your post better than Jim.  But I wanted to add something for those trying to figure out what course to take.  I had my surgery in 2010 and did not end up with the results I had hoped for.  I, too, had facial paralysis.  Today, most of the facial symmetry has come back except for the eye and the forehead.  I have had my moments of tears and frustration.  However, my tumor was pressing on my brainstem.  It was either surgery or future burial (I'm claustrophobic so I chose surgery).  The bottom line is that you have to deal with what you are dealt.  Many other things can go wrong in one's life.  This is just one of many.  I hope that things go better for you in your recovery but hope those that cruise the Forum to find their answers go into their surgery or radiation with a positive resolve.  What happens, happens.  How you cope with the results is the main difference.

[waypoint]

I wanted to chime in also. I was also diagnosed in Houston in the summer 2007 and had mine removed Oct of  07'.  Don't let anyone tell you its no big deal.  Its definitely a life changer, but its not a life ender.  How you work at the recovery phase is paramount.  I too suffered from facial paralysis, but work hard every minute working to regain some facial control. It was two months before I began to see my left nostril twitch. All those sunday in church standing there practicing my facial muscles and only half my face moving. I'm sure many congregation member were thinking I was some crazy eyed killer. All in all, never give up. It gets better and eventually, you will return back near a level of normalcy. It will be different, but you will be able to continue on with your life. Best wishes to all that are unlucky enough to have to travel down this road.