Author Topic: A new member in the club nobody wants to be in....  (Read 7146 times)

wyhaines

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A new member in the club nobody wants to be in....
« on: February 10, 2014, 01:20:48 pm »
So, almost exactly one month ago, at the end of my work day, I was walking through my office, and turned a corner, and all of a sudden, I felt funny.  Dizzy!  It came like someone turned on a switch, and while not bad, was unpleasant.  I drove home, and by the next morning, I couldn't move 10 feet without having to just lay down and not move because of the nausea from the motion sickness.

After an ER visit which included a CT scan (that showed nothing abnormal), I was diagnosed with a sinus infection, given some antibiotics and told to take meclizine and vallium to see if it helped, and sent home.

I had been dealing with some long term "weirdness" in my right ear.  tinnitus, hearing loss, a sense of pressure, and audio distortions.  This had been ongoing for about 4 years, but had come and gone a few times.  About a half a year ago I had seen an audiologist who basically told me, "Yeah, something weird about your hearing on that side....see an ENT."  And....I hadn't done it yet.  As a single father of four kids, life was busy, and it didn't seem like a high priority.

But, after the horrible vertigo, I got right in to see a local ENT.  His preliminary diagnosis was meniere's disease, but he ordered an MRI to be certain there was nothing unexpected going on.  In the mean time, the antibiotics killed the sinus infection, and with that, the vertigo quickly went away.  Victory!

A few days later, I had a very, very bad day that had nothing to do with my ear.  My gall bladder, which had never given me any issues that I knew of, got quite angry.  I ended up having an ultrasound on my gall bladder the same day as the MRI on my head.  The ultrasound showed that my gall bladder wasn't doing me any favors, so two days later it was removed.  During all of this time, I had no further issues with vertigo.

However, the next day, while recuperating at home from the gall bladder surgery, I got a call from my ENT's office.  "The MRI shows that you have an intralabrynthine vestibular schwannoma measuring 4mm x 3mm x 4mm."

Fast forward a few weeks.  I met with the ENT, who handled it quite well.  I've done an enormous amount of reading, and have a pile of MRI disks ready to send out for doctor/medical team auditions -- I live in SE Wyoming, quite far from most of the well established practices for dealing with this, so I am expecting to have to travel _somewhere_.  I just need to figure out where.

I have come to terms with this, as well as I can.  I'm 43, single, with 4 kids for whom I am the primary caregiver, but I am also fortunate enough to have good insurance and a job that I can do anyplace that I have an internet connection and my laptop.  My struggle now is with understanding the pros and cons of the various options that may exist for me.  The ENT commented that it appeared that my tumor sits quite close to where the vestibular nerve goes into the semicircular canals, which may explain why such a small tumor is causing me so many problems. In any event, sorting out all of the information to truly understand the implications of surgery versus radiation, and what the current accepted best practice is for when radiation makes the most sense, or what the drawbacks of it are, long term, versus surgery, has been a slow and difficult process.

Figuring out who to send my medical information to has likewise been difficult.  I have envelopes to House Clinic, Barrow Neurological Institute, Vanderbilt (I have friends who live relatively close to there whom I could stay with), and Stanford (my employer is in San Francisco, so that proximity could be helpful).  However, I am really struggling to even figure out who else I should send information to, or how many different doctors/centers I should contact.

And that's me and my situation in a nutshell.


Kirk Haines

Jim Scott

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Re: A new member in the club nobody wants to be in....
« Reply #1 on: February 10, 2014, 02:31:14 pm »
Hi, Kirk ~

Thanks for registering and posting your comprehensive explanation of how you ended up with an AN diagnosis. 

I'm sorry to learn of that diagnosis but your post makes it clear that you are handling the situation rationally with reasonable expectations.  That kind of methodical approach will serve you well as you traverse this sometimes bumpy road on your AN journey.

Although you will have to make some difficult decisions in the weeks and months to come, sending your MRI discs to well-known doctors in various locations seems like a practical approach, considering that you have already accepted the fact that you'll likely have to travel to receive the best care. 

I'll let the medical professionals help you decide on surgery versus radiation but I sense that you are well organized and will make the best decision for you.  As you know, AN surgery can be daunting but at 43, some doctors may be adverse to using radiation to address your tumor, due to unknown long-term effects.  That's a conversation you'll have to have with the doctors you talk to but for now, I simply wish you the best and remind you that this is a support site for AN patients and we stand ready to help in whatever way we can.  Please try to keep us updated as things proceed.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

arizonajack

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Re: A new member in the club nobody wants to be in....
« Reply #2 on: February 10, 2014, 02:45:52 pm »
Welcome Kirk.

You've probably got 4 of the best places on Earth to send your MRIs too.

But I would caution you that having too many choices is just as bad as having too few choices.

At this point your choices are basically going to be either some form of surgery or some form of radiation. Once you've chosen one or the other it becomes a matter of picking the place.

I'm pleased to see Barrow on your list as I had my GK by a team from Barrow. However, Barrow does both surgery and radiation and isn't biased in favor of either.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

TexasSprinter

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Re: A new member in the club nobody wants to be in....
« Reply #3 on: February 12, 2014, 11:20:59 pm »
Kirk--sorry to hear about your diagnosis.  We are approximately the same age, with the same number of small kids, and I elected surgery over radiation for my AN. (But as you probably know from reading posts on this forum, each person makes the choice that best suits him/her.)  If you elect surgery, I hope you have a good support system in Wyoming to watch the kids while you're out of commission for a bit.  I live in Dallas, which has a great facility with great surgeons (UTSW), and I sent my materials to House for a second opinion.  From everything I have heard and read, House and the other facilities you have identified are all excellent.  I agree with ArizonaJack that too many second opinions could become overwhelming.  Best of luck with your decision, and keep us posted.
Scott 

v357139

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Re: A new member in the club nobody wants to be in....
« Reply #4 on: February 13, 2014, 08:39:38 pm »
The places you listed are excellent places, and may be enough.  Since you will be getting phone consults, I suggest writing up a list of questions and write down the answers.  Stick to the big questions.  I got bogged down in too much detail, and that did not help me.

In a nutshell, surgery is for those who just want it out.  Radiation avoids/lessens some surgical complications like CSF leaks, and is not invasive.  You have to decide if you have the patience for radiation.  It takes time to know if it worked.  If doctors propose radiation, ask them if it will relieve your symptoms - it does not always.

BEst of luck and let us know if you have specfic questions.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

TSS

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Re: A new member in the club nobody wants to be in....
« Reply #5 on: February 14, 2014, 02:27:37 pm »
Hi Kirk,

I went through the journey last year and agree with many here that you need to cast out a net for the options and consultations and then you will zero in on the right choice.  Each of us probably can tell you the magical moment.  For me, it was when I visited a highly respected neurosurgeon who has performed hundreds of related procedures and told me today he would recommend to a family member radiotherapy.  I elected CK at Baylor in Dallas last Summer and everything has been mostly fine since.  I will have a 9 mos MRI in April.

Best of luck.

Todd

leapyrtwins

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Re: A new member in the club nobody wants to be in....
« Reply #6 on: February 16, 2014, 01:07:01 pm »
I'm pleased to see Barrow on your list as I had my GK by a team from Barrow. However, Barrow does both surgery and radiation and isn't biased in favor of either.

Excellent place; and excellent point - don't just consult with places that are biased towards surgery.  You may decide that radiation is the best choice for you.

Kirk,

there are worse things in life to be diagnosed with; the first and probably most important point, 99.9% of ANs are benign.  That was what I chose to focus on when I was diagnosed.  Like you, I'm a single parent (in my case 24/7 - sole physical and legal custody) and my twins were 11 at the time I found out I had an AN.  All I could think was "thank God it's not cancer; thank God it's not terminal".

I was given the choice of surgery or radiation and opted for surgery.  I was 45 1/2 and had a great outcome.  You should decide what is best for YOU - after you gather all the info you can about ANs and your AN in particular.  Making your treatment decision is oftentimes the hardest part of the AN Journey.  In making your decision, you should follow your head, your heart, and your gut.  Find a doctor or doctors you trust and have utter faith and confidence in, but don't take anything they say as gospel - no one, not even the best doctor can guarantee you anything 100%. 

Barrow is a great place to start; I'd also suggest Stanford.  House is obviously another good choice, but they tend to say surgery since that's what they do.  Your AN is small so (depending on location) radiation might be an excellent choice for you.  I'd also ask if the mid-fossa surgical approach is a possibility for you.  Not all docs do mid-fossa, but it might be your best bet if you are eligible; it gives the best odds of saving your hearing.

Good luck and keep us posted,

Jan

 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

kcarloy

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Re: A new member in the club nobody wants to be in....
« Reply #7 on: February 16, 2014, 09:37:56 pm »
Take your time and sort out which option is best for you. It really is your decision. I live in Idaho and also traveled to get treatment. Rural America is a great place to live, but inconvenient when you have a rare tumor. I found traveling for treatment worked out very well and was less complicate than I expected! Good luck

wyhaines

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Re: A new member in the club nobody wants to be in....
« Reply #8 on: February 19, 2014, 04:12:19 pm »
Thanks everyone for the replies.  I finally got around to mailing my MRI discs out, so now I am just waiting for the responses.

I have no idea how long this process takes, but I am assuming that it will take a few months to get my course of action laid out, whether it ends up being radiation or surgery.


Thanks again,

Kirk Haines

v357139

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Re: A new member in the club nobody wants to be in....
« Reply #9 on: February 19, 2014, 07:46:20 pm »
Let us know how it goes.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

wyhaines

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Re: A new member in the club nobody wants to be in....
« Reply #10 on: March 01, 2014, 01:22:02 pm »
So, I have heard back from Dr. Goddard at House, Dr. Friedman as USC, and Dr. Rivas at Vanderbilt.

The good news, such as it is, is that my tumor is in a very unusual location.  It is growing from one of the terminal ends of the vestibular nerve, INSIDE the labyrinth. Collectively, the above guys have only seen tumors in that location a handful of times in their careers, so there is a lot of speculation about the future behavior of the tumor and what should be done.

The general consensus is that they expect it to grow at the same rate as it would if it were sitting on the other side of the labyrinth wall, in the auditory canal -- i.e. approximately 1mm/year.  It will eventually wipe out all balance function on that side, and will probably eventually wipe out the hearing.  There is some disagreement over the risk that is posed by doing nothing.  IF the impacts to my balance can be handled through medication and coping skills, it is possible that as it grows, it'll move towards the middle ear space, which gives it plenty of room to simply be ignored.

On the other hand, there is a risk that it will break through into the auditory canal, which then becomes a more serious issue to deal with. As it sits right now, there is very little risk to my facial nerve if it were removed.  It'd essentially be a translab surgery, but because of the tumor location, there should be no interaction with the facial nerve at all.

Nobody seemed to think that radiation was a good choice, though, given the location of the tumor. I may have to investigate that more before I make a final decision.

In any event, all seemed to be in agreement that if my hearing on my right side is good enough to be aided by a hearing aide (which it may or may not be....it was classified as a moderate-severe hearing loss 11 months ago, and is worse now), and if the balance effects are manageable, I should just monitor it with an MRI this summer, and plans for an additional MRI on a yearly basis.  On the other hand, if my hearing is already compromised beyond any real utility, there are few downsides to having it removed as, given the location, the surgery is very low risk.

If my hearing still has some utility with a hearing aide, but the balance/vertigo effects become difficult to manage (they are very intermittent right now, with some days being completely symptom free, and other days requiring me to take a diazepam and just lay still in order to cope), then gentamicin perfusion is an option that could buy some time.  It would have a 30% change of wiping out the remaining hearing, but would kill enough vestibular function to eliminate the dizziness problems emanating from that side. The tumor would continue to grow, though, and there would remain the very real possibility that I would need surgery later, anyway, to remove it, to gentamicin perfusion is just a symptomatic treatment to buy time.

I'm getting a repeat hearing test on Monday to see how much worse my hearing is on that side.  From that, I think I will have a pretty good idea about what my next course of action is.

Ruthie Mac

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Re: A new member in the club nobody wants to be in....
« Reply #11 on: March 01, 2014, 10:38:55 pm »
Have you heard back from Stanford Cyberknife? Just curious what the pro-radiation teams have to offer.The technology has improved a lot recently.  I highly recommend getting advice from some of the East Coast Radiologists... Dr. Gil Lederman (RadioSurgery New York) Dr. Jay Loeffler, Mass General Boston (proton radiation), Dr. T.J. Fitzgerald, UMass Memorial, Worcester MA ( Varian Trilogy); Yale New Haven Cyberknife; John Lipani, Princeton NJ.
I had a hard time deciding between surgery and radiation. These were the Doctors that gave me the most information about radiation, which is what I ended up choosing with Dr. Fitzgerald at UMass.
I don't think there's such a thing as too much information...I wanted to have as many doctors as possible review my MRI...
You want to feel really confident about your decision!!
Wishing you the best...
Ruth

4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

v357139

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Re: A new member in the club nobody wants to be in....
« Reply #12 on: March 03, 2014, 02:17:56 pm »
Sound like you have some options, which is good.  A six month MRI should give some idea of its growth rate and help with the decision - some grow slow and some grow fast (like mine).  It did not sound like you consulted with any radiation specialists like Dr Chang at Stanford.  You might want to just to get the full spectrum of expertise.  Sounds like you made a great start.  Keep us posted.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

wyhaines

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Re: A new member in the club nobody wants to be in....
« Reply #13 on: March 04, 2014, 06:33:37 pm »
I contacted Stanford, but they make the process significantly more difficult than some of the other medical centers do in order to get that initial consultation, so I decided to hold off on any of the "hard" ones until I had some initial contacts, and more information in general.

I had a follow up audiological exam yesterday, and it showed that I've lost about 25db of sensitivity in the bass range of frequencies, and about 20db in the treble range, with a crossover right at 1000khz.  My current perception threshold is about 85db for bass frequencies, and 65db for treble frequencies, with 1000khz sitting at 75db.

My word recognition sits at 56% at a volume level of 85db.  The interesting thing about the word recognition test, though, is that speech at 85db on my bad side came with sound explosions that made it unpleasant to listen to.  The audiologist tried testing at 90db, but 90db was actually physically painful, which is all very curious because I don't have to drop very many decibels in volume before it becomes effectively inaudible.

So, a hearing aid MAY offer some benefit, but it doesn't look like it will offer significant benefit, and there seems to be a very, very narrow band between not being able to effectively hear sounds, and perceiving them as so loud that they are painful.

Given the location of my tumor, and the relative paucity of my remaining hearing, radiation treatment is less attractive to me.  Because my tumor is contained inside of the labyrinth at this time, he risk to the facial nerve is extremely low.  Given that, and my general discomfort with having radiation sprayed in my head, I have a hard time seeing an advantage to radiation given this tumor placement.

I will see what the doctors think, but my hunch is that I will probably be getting this removed in early summer if it continues to give me disequilibrium and motion sickness issues.  I've also noticed that I sometimes experience a sensation that is almost like a very, very mild ear infection in my right ear (very mild, subtle pain), except it isn't an ear infection. My speculation is that this is being caused by the tumor irritating something in the labyrinth.  It will be unpleasant if that increases.


Thanks much,

Kirk Haines

v357139

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Re: A new member in the club nobody wants to be in....
« Reply #14 on: March 06, 2014, 04:16:35 pm »
Sounds like you have made significant progress towards your decision.  Best of luck.  I am sure it will go well.  Let us know where you decide to go.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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