Tag Archives: acoustic neuroma

Less than 2 weeks to go…eek.

Time is flying by and I’m not sure I like it.  Yes, I want to get this over with, but let’s be honest…I don’t want to do it at all.

Monday I had an appointment with a vestibular therapist.  She introduced me to a list of exercises I will need to start doing as soon as I’m awake/alert enough to do so in the hospital and a number that I will continue and/or start once I am home from the hospital.  Eye exercises, inner ear exercises, balance exercises, and a combination of these.  Unfortunately, she said it won’t do any good to start on them now.  It is only after my balance nerve is cut during surgery that these exercises will become crucial to my recovery and the re-training of my brain.

Next week I go in for my pre-op testing.  Not sure what all that will entail yet but they mentioned an EKG and meeting with an anesthesiologist.  Pre-op appointment is at the actual hospital where I will have my surgery.  Glad Mom will be back up here in time to go with me to that.  Hopefully I won’t be a complete mess.

I have to attend a meeting in Frisco on Wednesday, so that will be my last day at work before I start my medical leave.  For once, I am thankful for the lack of projects right now.  Not as many loose ends to tie up or hand off before I’m out.  Best guess right now is I will be out roughly 6 weeks for recovery…back to work in early January.

Not exactly the way I would’ve chosen to celebrate the holidays and my 40th birthday, but if the surgery goes well, the tumor is gone, and my recovery goes smoothly, that will be an excellent birthday present indeed.

Surgery Date Set

Just over a month later, we finally have a surgery date:  November 25, 2014.  The Tuesday before Thanksgiving.

Kind of relieved, but freaked out even more now because that means this is really happening.  The only time I’ve ever been in the hospital or had any type of surgery is when I was 18 and got my tonsils out.  So to jump from that to brain surgery….I do it big!

I’m ok if I just don’t think about it.  If I start thinking about going to the hospital, getting wheeled into the OR, what they are actually going to be doing, etc, then the waterworks start.  “Scared” doesn’t even scratch the surface of what I feel.  I’m not looking forward to this at all.

I keep trying to remind myself what another AN patient said:  On surgery day, I have the easy part.  All I have to do is show up and go to sleep.

Still trying to schedule…

I heard from Dr Mickey’s nurse (Mike) earlier this week (Dr Kutz’s scheduler has still never contacted me the first time).  He apologized for not getting back to me sooner (he just got the message from Kutz’s person on Friday….he called me Monday.  Perfectly acceptable….unlike the woman who never once acknowledged me or returned my calls…grrr…still irritated about that).

Anyway, he indicated that Kutz’s scheduler was apparently out of the office this week (lovely) but that so far, it looked like January would be the first available dates for surgery.

WHAT?!?!

All this time the discussion has been within “4 to 6 weeks” and “definitely before Thanksgiving”.  Now we just jumped to next year?!  I think Mike could tell I was getting upset/emotional and told me to hang in there, that when Kutz’s scheduler is back, they will try to find something better and reminded me “these tumors don’t grow very fast.”  Generally, no, but if you’re the one with it in your head, and you’ve decided to get surgery, having to wait another 3 months (so almost 6 total since diagnosis) feels like an eternity!

I ended up sending a message back to Dr Kutz’s nurse through their online chart thing asking for him to call me because he had been very confident that the surgery could be done sooner rather than later, and especially this type of surgery because one of the goals is to try and preserve the remaining hearing….waiting just increases the odds that that hearing might go before then.

Dr Kutz called me the next day and said he agreed…did NOT like January as an option so he and Dr Mickey had talked and they could do October 28.

WHAT?!?!

Ok, now time for a freak out in the other direction.  lol  That’s barely a week and a half away.  I have stuff to take care of at work, clients to hand off, disability paperwork, etc, stuff to get cleared out at home, my parents have to have some notice (since they are essentially moving to Dallas to help me through the surgery and recovery).  Told him I would talk to my family /work and let him know by the next day but that I would REALLY rather something in November.

After soaking on it overnight, I just didn’t feel like I could get myself in the right frame of mind for sugery that quickly.  AND they had been very clear that I needed to stop smoking at least 4 weeks prior (this date would just barely be 3 weeks).  So I called back and asked them to look for another date.

We’ll see what happens….hopefully this doesn’t mean January.

Is it really that hard to DO YOUR JOB?!

So, on September 29, I let Dr Kutz know I was ready to move forward with surgery.  He said his scheduler would contact me to discuss dates (knowing that, at the time, I was waiting to find out that exact date to back into my quit smoking date….4 weeks prior to surgery).

I waited a few days but didn’t hear from anyone, so called his office and asked.  I was told to give them 7 to 10 days.  If I hadn’t heard from them by middle of the following week, to call back.

So….I waited again.  By October 8, I still hadn’t heard a peep from anyone, so I called Dr Kutz’s office again.  Explained that I was waiting to hear from the scheduler and that it had been a week and a half.  They transferred me to the scheduler (Robbie?) and I got her voicemail (of course).  I left a message explaining who I was and that I had not heard from anyone in 1.5 weeks regarding scheduling surgery and asked (very politely) for her to please call me and let me know the status of this.

Next day….still nothing, so I called again.  And again was transferred to her extension.  And again got her voicemail.  Left another message that I still had not heard from anyone even after leaving a message the day before.  Again asked for a callback.

Friday comes….still nothing.  So I use the online “my chart” thing that UTSW sends out to patients and send a message to Dr Kutz’s office that way.  His nurse responds and after several messages back and forth, I am assured that the scheduler has “just contacted” Dr Mickey’s office to find out available dates.  JUST CONTACTED?! What the hell has she been doing for the past 2 weeks?!  Or even what has she been doing for the past 3 days while ignoring my voicemails?  Seriously.  What.  The.  Eff.

This woman apparently has no clue how stressful and scary it is to make up your mind to have this surgery, then to have to sit around and wait for someone to contact you, give you ANY details, a timeframe, etc.  Add to the mix the fact that I went ahead and started my no-smoking journey on Oct 7 (because I was told to expect surgery in 4 to 6 weeks….only to find out that the first 2 of those weeks, absolutely NOTHING had been done towards scheduling it).

To say that I completely “dropped my basket” would be a huge understatement.  If one had been nearby, I’d have smoked an entire pack of cigarettes to try and calm down.  Since there wasn’t, I screamed and cried, called my mother, and basically had a nervous breakdown for well over an hour.

I don’t understand why it seems like EVERY FREAKING THING with these doctor’s offices takes an act of flipping congress to get done.  First it was all the referral nightmare crap trying to get a doctor’s office to send something to another office (and heaven forbid THEY contact each other to see why they aren’t receiving….no, apparently I need to referee that bullshit and play phone tag between them all for days until they finally get it right…or halfway right).  No something as serious as scheduling surgery for someone who has a job title of “scheduler” sits in a pile for 2 weeks, 3 phone calls, and a half-dozen emails before it gets done.

Seriously.  If I was that non-responsive at my job, I wouldn’t have that job anymore.  Ridiculous.  I am so frustrated!!!!

Decision made…I guess.

I got a callback from Dr Kutz today and was able to ask a few more questions, namely:

Q:  Does the middle fossa approach present more risk?

A:  Slightly higher risk of injury/damage to the facial nerve.  By “slightly” meaning a difference of between 7-8% chance with translab or retrosigmoid compared to 7-9% with middle fossa.  It’s slightly higher, but again, much will depend on the exact location, size, and characteristics of the individual’s tumor.

Q:  What are the chances of regrowth after surgery?

A:  Very rare in the cases were 100% of tumor was removed.  If part of the tumor is on the facial nerve and needs to be left alone, there is a slight chance of regrowth, probably around 5%.  In his experience, has only had 1 patient where this happened.

I talked through my “logic” again in terms of the way I was leaning, and he re-confirmed that that made sense.  That it really is about the patient’s preferences and tolerance for different things.  Aside from my other reasons, I just really don’t think I’d make a very good “watch and wait” patient.  Every little symptom causes panic and fear and I do NOT want to live like that.

So…..I told him I would like to move forward with surgery. The scheduler should be contacting me soon to confirm a date.

Oh, and Dr Kutz reiterated what Dr Mickey had told me, that I really should NOT smoke AT ALL (no ecigs, no patches, no nicotine, etc) for at least 2-4 weeks prior to surgery.  I’ve been waiting on a firm surgery date to figure out my official “no more smokes” date, but at this point, I probably just need to give myself a deadline.  😐

I really think I’m doing the right thing.

2nd opinion – now what?

I got through my 2nd opinions last week. The doctors at UT Southwestern seemed to lean towards either watch and wait OR go ahead with the middle fossa surgery. I have been doing lots of soul searching and praying and, while I still haven’t come to a 100% decision, my gut is telling me that I will have to do surgery eventually anyway….so why not get it over with now while the tumor is still small and there is a chance of preserving my hearing.

If I do the watch and wait approach, odds are good that the tumor will grow and I will eventually lose all hearing in that ear…..just no way of knowing whether that would be weeks, months, or years from now. And the larger it gets, it seems to me the more potential damage and complications possible with surgery.

I have gotten in touch with a couple of patients who had these same doctors (and 1 of them actually had the exact same type of surgery) so am talking with them for some more perspective before making any final decisions.

I realize how silly this will sound to my non-smoking friends, but one of the really crappy things (there’s lots of them actually, but this is what I’m stuck on right now…lol) about moving forward with surgery is that I will need to quit smoking a little earlier than I was trying to talk myself into! Seems like an awfully stressful time to give up my favorite vice!! But they tell me the nicotine (not the smoke…so there goes my idea of an e-cig) does something with blood vessels constricting which could prolong or even cause issues with recovery. Damn it.

First appointments today

From a message sent to friends today:

Thank you all SO MUCH for all the texts, messages, prayers and good thoughts today. After meeting with both the neurotologist and neurosurgeon, the short of it is about what I expected….both are recommending middle cranial fossa surgery. Still processing, researching, and trying to line up appointments for 2nd opinions, etc. But I wanted to send a quick note to let you all know that I DEFINITELY felt uplifted during my appointments today.

I cried before and bawled after, but was completely calm and able to ask lots of questions and understand what the doctors were saying DURING the appointments. My mom even commented that she was surprised how calm and collected I was talking with the doctors. Your prayers worked and I can’t thank you all enough for that!! Much love to all!!!

Acoustic Neuroma Association

The last few weeks, since this dreadful tumor was discovered, I have been scavenging the internet, trying to educate myself as best I can while simultaneously avoiding too many gory details or videos that will frighten me further.  I discovered the Acoustic Neuroma Association website, which has provided me with lots of information, information on support groups, a discussion forum, and more about this uncommon condition.  It is really nice to be able to read posts from other patients who are in or have been in the same boat as me.  Admittedly, some of the stories are absolute nightmares and scare me to tears, but I think it helps to at least have a realistic idea of some of the (many) risks of treatment.  None of them are particularly appealing, none of them are guaranteed, and none of them are without risks.

One thing I have read repeatedly is that, given that this is a rare type of tumor, it is absolutely critical that you find doctors with considerable experience treating acoustic neuromas.  And that you get multiple opinions and find doctors that you are comfortable with, confident in, and that have such experience.  I’m not sure what qualifies as “considerable” experience, but a basic ballpark I’ve heard/read a few times now is that they do at least 30-50 of whichever procedure (surgery or radiation) per year.

I have my first appointments with these specialists (neurotologist and a neurosurgeon) coming up but am already thinking I should consider 2nd appointments with some different doctors.  The ANA’s website does list places / doctors that have met their defined criteria, however, it is self-reported by these doctors (and presumably, there is some cost associated), so, while I’m trying not to put TOO much stock into that list, I do see UT Southwestern as the only place listed currently in Dallas.  So I will likely look to them for my 2nd opinions.

Test Results

Rather than re-writing all the details, I thought I’d just include a copy of the message I sent to a handful of friends about it on the day I saw Dr Arviso, my new ENT, to get my test results:

I would appreciate any prayers or good thoughts you want to send my way. I’m trying not to freak the fuck out just yet.

Some of you know I have been having vertigo off and on for the past 6 months and have lost partial hearing in one ear. I finally got my ass back in to see a doctor a different ENT couple of weeks ago (see, A? I kept my promise to you!!). They did a hearing test and confirmed I have lost some high-frequency hearing in my left ear.  Since then I’ve had a VNG test and MRI of my brain. I saw the doctor today to get the results.

Long story short, they found a small tumor in the auditory canal between my ear and brain. They believe it is an acoustic neuroma, which is a generally slow-growing, benign tumor (that’s the good news).  They also found a small cyst in my pituitary gland. They’ve referred me to a neuro-something-or-other and a neurosurgeon to review my scans and see what they recommend. It could be anything from just keeping a close eye and repeat scans over a period of time to radiation to surgery. I won’t know until I see these other docs so hopefully they can see me soon.

That’s really all I know at this point, and literally just found all this out today. I’m not too proud to admit I am scared shitless right now! I’ll let you know what I find out in the coming weeks.

…They claim that no matter what, the hearing loss I have is basically permanent and will not come back….it will continue to get worse.

Mom has already said whenever they can get me in to see these other docs that she will plan to come up so Nurse Mom can remain calm and ask questions that I wouldn’t think to ask. My brain pretty much shut down when they said “tumor” and all I could think was DO NOT START CRYING IN THIS OFFICE!!! Pretty much everything after that was a blur. Then I boohooed all the way home til I could scan the results and send to Mom before I called her because I knew she would want to see exactly what they said.

I do have to say, I was pretty disappointed that, other than these 2 issues, they said the rest of my brain scan was “grossly normal” and my cerebral-something was “unremarkable”. Don’t they know brilliance when they see it?!?!!! lol