Sudden hearing loss and relation to swelling?

[Tisha]

Tumbleweed,

Do you remember any more details about hearing loss occuring several years after CK?  I wonder how many people this has happened to.  That is worrisome.

Tisha

[mk]

From the research studies that I have read it is hard to pinpoint exactly, because there are many criteria in various studies and the different definitions of serviceable hearing etc.  For example you may have some loss in db, but still retain serviceable hearing (which is the most desirable), in terms of voice recognition. Or the opposite, you might lose voice recognition but still be able to hear.
My ENT seems to think that as long as voice recognition is retained, any other reduction in intensity can be easily fixed with conventional hearing aids.

There are two type of hearing loss: Gradual loss, which is due to long term damage to the nerve that can happen over the course of years. It is irreversible, and nothing can be done about it, but the good news is that it can usually stabilize to some level (hopefully still serviceable). The more hearing you have going into treatment, the more likely it is that you can retain a level of serviceable hearing. People with severe loss prior to treatment are most likely to end up SSD.

The sudden loss which is due to swelling cutting off the blood supply to the nerve can be usually treated with steroids and can resolve if taken care of promptly.

Tumbleweed, regarding distortion I have had it for months, even prior to GK. It comes and goes (some days it is worse than others, especially if I am fighting a bug and then it disappears). To be honest, I don't really mind it in the grand scheme of things, I am so happy that I can still hear the way I do.

Marianna

[Nancy Drew]

Marianna,

You are an honorary AN doc in my opinion.  All of that stuff you said about hearing is exactly what my doc said, and it was good to get a review.  Thanks for your insight.

Nancy

[mk]

Wow thanks!

I guess I have been reading too much 

I totally understand how it feels to "be on guard" as you mentioned in another thread. I was like that for the first 3 months (my major concern was the possibility of serious swelling) - as I approached the 3 months and nothing bad happened, I started to be more confident and I kept telling myself that everything will be allright.

It was great that your hearing test was so good. Keep being positive! Even with a few bumps here and there, everything will turn out just fine.

Marianna

[Tumbleweed]

Tisha:

I remember a couple things. First of all, one of the neurosurgeons (who also does GK) I consulted prior to choosing Stanford for my treatment said that his research indicates that 40% of GK patients have their hearing preserved past the 6-year mark post-GK. The other 60% lose their hearing sometime during the six years post-GK. Paraphrasing what he told me, the curve on the graphs (showing those patients who suffer hearing loss after either surgery or GK) "catch up with each other" after about six years, thereby showing no long-term benefit with GK versus surgery for hearing preservation. HOWEVER... the literature this doctor gave me was rife with cheerleading comments for surgery and cited severely outdated data that was decades old, AND this particular doctor did way more surgeries than GK treatments (only about 6 per year for the latter). So, I personally found his perspective to be both biased and questionable.

The second thing I remember about the studies I read on hearing preservation with different treatments was that they weren't terribly specific with regard to exactly when within the study period (usually 5 or 6 years) each patient in the study groups lost their hearing. Any given patient cited in the studies may have lost their hearing in 1 year or in 6; the reports simply lumped everyone who lost their hearing -- regardless of how soon -- in the same category.

It's important to realize that some of the people who lost their hearing may have lost it for reasons other than GK or CK treatment: 1. very elderly patients may have lost their hearing due to normal aging or opportunistic infections, and 2.since radiosurgery doesn't kill a tumor immediately (necrosis can take many months to occur), the tumor itself may have destroyed the hearing nerve after treatment and before the tumor died.

Best wishes,
Tumbleweed

[mk]

Just to add something else on the issue of statistics on GK: When looking at research studies it is very important to check what is the radiation dose they refer to. Generally research studies from the '90s referred to radiation doses of 14-16 Gy or even higher, which resulted in high rates of nerve damage. The standard doses nowadays are much lower, 12-13Gy or even lower. One more reason why it is very hard to draw any conclusions.

Marianna

[sgerrard]

The other 60% lose their hearing sometime during the six years post-GK... thereby showing no long-term benefit with GK versus surgery for hearing preservation.

I would argue that six years of hearing is better than none, and would count as a significant benefit to me.

In addition to the adjustment of the GK dose Marianna mentioned, and other refinements of the procedures, there has been a bias in patient selection over the years. In the days when they only did radiation on the elderly, the rate of hearing preservation would have been understandably lower than it is today.

That may swing the other way now. If radiation attracts a larger share of the small ANs with good useful hearing, it may show better statistics for that reason alone. It is actually quite difficult to control all the variables and get a true apples-to-apples comparison, since neither patients nor doctors want to do a true randomized study.

Steve

[Nancy Drew]

So much good info here.  I remember the radiation oncologist and my AN doc saying the same thing about the lower radiation dose having a more positive outcome than when they used the higher doses in the earlier years of radiation treatment.  My doc said they used 12 1/2 Gy on mine.  My AN was really tiny, and I I had good hearing pre-GK. I have high hopes that I will continue to have good hearing down the road.  I am totally impressed with all of the research you guys have done.  I know you can find so much conflicting information, but what you are reporting here looks like very up to date research.  Thanks.  Nancy

[Tumbleweed]

Great posts, Marianna and Steve. To put this all in perspective, Dr. Chang said I had a 75% chance of preserving my hearing at the current level. Dr. Gibbs (my RO) said she expected my hearing function to "slightly diminish" over time following CK treatment. There are no hard and fast rules or ways to exactly predict outcome, but the bottom line is that results are improving as doses are lowered and execution is perfected.

The general consensus among those studying the most recent data is that rates of hearing preservation with CK and GK are at least as good as that achieved with surgical resection. For medium- and large-size tumors, radiosurgery usually offers a better chance of hearing preservation than does resection. In my case (medium-size tumor), I was told by all six of the doctors who gave me their consultations that resection offered a virtually 0% chance of preserving serviceable hearing. CK and GK outcomes were predicted to offer between 50% and 75% chance of hearing preservation at the current level (which is much greater than "serviceable hearing," as my hearing is still pretty good).

Best wishes,
Tumbleweed

[Tisha]

Tumbleweed, MK and Nancy,

Thank you all so much for this information.  What a tough decision to make, isn't it.  It's such a risk to take.  Do the radiation and chance of 20% deafness or watch and wait, and then one day wake up with my hearing gone.  Mr. Medbury says I will lose my hearing if I do nothing.   That's pretty blunt and staightforward.  I'm heading down the path of radiation, but it's still scary.

What I'm researching now and trying to get my arms around, so if anyone can help me that's great.  Dr. Change does 3 treatments I understand.  JHH I believe does 5.  Another poster had 5 done with CK because her Doc said there's a better chance of hearing preservation with 5.  So, why do just 3 at Stanford.  I wish I could get my hands on some published, peer reviewed studies of this.  I think this will make my decision.

Tisha

[Tumbleweed]

Hi, Tisha:

I think you won't find any peer reviews that, as Steve put it, compares apples to apples regarding 3 vs 5 treatments, for example. Each doctor and facility has their own way of doing things. And ANs are so relatively rare that there simply isn't a one-size-fits-all, standardized treatment protocol or the patient-history data to irrefutably suggest one protocol over all the others.

Rather than try to find consensus (which doesn't exist) on what specific treatment protocol is most effective and safest, I respectfully suggest you simply search for the doctors with the most experience and greatest success record with treating ANs. It's a tall order to expect we laypersons can decide whether 3 or 5 RS treatments are the best for us, especially when our particular tumor size and location may suggest to an expert a different protocol than what any one study may generally conclude is best.

It's great that you are narrowing down your choices and starting to get a gut feeling about your general treatment preference (radiosurgery vs resection). I also think it's important to make a personal decision as to whether you're more comfortable with CK, GK or standard FSR. But once you decide which type of treatment is best for you, I suggest you just choose the medical facility and doctors you have the most confidence in and leave the details of the treatment up to them. Sure, ask them a ton of questions about how they plan to treat you and why. That'll let you know what to expect and make you more comfortable with the treatment process. But at some point, you're just going to have to trust that they know what they're doing, surrender, and place yourself in their care.

For example, I was very concerned that radiosurgery would destroy my hearing on the AN side. I felt that CK had the best track record of preserving hearing, so I was sold on CK. I was also the most impressed with Stanford and Dr. Chang. When I asked Dr. Chang why he didn't split up the treatments into more than 3 doses, he replied that he observed no benefit to fractionating any more than to 3 treatments. I wasn't about to steer away from Dr. Chang and Stanford (my first choices in my selection process) just because of some theory about more fractionation being better. I wanted to know why Dr. Chang only does 3 CK treatments and not 4 or 5 or more. But once he told me his reason, I decided to just trust him. It's no use second-guessing a guy who did around 700 successful AN treatments last year alone. That kind of experience is what matters most to me. Practice makes perfect. I had to just surrender to his direction and trust he knew what he was doing.

Considering that all treatments for ANs carry risk, I know the surrendering part is the hard part. All "posties" have been through that rough process. Just know it gets easier. You're doing a great job in weighing your options. You'll make the right choice and it will turn out okay.

Best wishes,
Tumbleweed

[Tisha]

Tumbleweed,

I have read and reread this post about a dozen times, because of my struggle with the 3 vs. 5 treatments at Stanford.   I've been trying to reach them by phone and e-mail, but nobody has responded.  I think they might be out this week.   Your post makes so much sense as far as experience.  I had some follow up questions for Dr. Chang, the difference in number of treatments being the most important.  I was hoping to get them answered this week, but i"m sure the holidays is pushing things back for them.  If his response gives me the same level of comfort as it did you, then I'm ready to proceed and give them my insurance card to get the ball rolling.  It really is nice to know that I've settled on a treatment (CK), I just have to have that final gut feeling resolved.

Anyway, thank you for this post, it has helped me put things into perspective.  For some reason the swelling is down the last few days so I'm hearing well.  Sometimes, even though it's a nice reprieve from the distortion, it makes me frightened to think I might lose it forever.  I guess I'm having one of those sudden "panic" moments that hits every so often.  I can actually hear the music from the radio today.  How nice.

Tisha

[Nancy Drew]

Hi Tisha,

You remind me so much of myself as I was trying to make my decision.  I am sure many folks can relate to your struggle as well.  I think I was convinced early on that I wanted to have GK, but I felt the need to check out every little fact and statistic.  My main worry was about the head frame, and it took a visit to the gamma knife center to talk to the nurse in detail about the whole procedure.  She let me put the head frame on, and I walked around the room looking at the gamma knife machine from all different angles.  It was just something I had to do, and it helped me get to my gut feeling..

It sounds totally reasonable that you would want to ask Dr. Chang more questions before making that final gut decision.  It is good that you have already made the choice to have CK....one less thing to worry about.  Now it is just down to the final few touches on getting what you need to make it a done deal.  It sounds like Dr. Chang is a really good doc so I am sure you are in good hands.  And, as for panic attacks, those are "normal", I think, for most people.  I am a little over a month out from GK, and I am doing really well and sometimes I forget that I even had GK.  Then when I realize how good I am doing, I will have a slight panic attack because it all seems to be to good to be true.  All that worry for nothing it seems.  Of course, with radiation we do have to play the waiting game, but I think radiation is a very good choice.

Hang in there.  You will make it through it, and it won't be long before you have it behind you and life will go on.

Nancy

[Tumbleweed]

It's no use second-guessing a guy who did around 700 successful AN treatments last year alone. Tumbleweed

Oops! I just reread this and have to correct myself: Dr. Chang had treated about 700 ANs in total as of about 11 months ago. He treated about 125 ANs in 2007 alone.

That's what I get for posting so late at night when my brain isn't firing on all 8 cylinders. 

Anyway, Dr. Chang has a ton of experience treating ANs.

Tisha, I think it's good that you're waiting to get that "gut feeling." It will come. In a medical situation like this, where there are no guarantees, you need time to process all your options and come to peace with a decision. You're on the right path and approaching the right destination for you.

Best wishes,
Tumbleweed

[Nancy Drew]

I has GK on Oct. 21st.  I have noticed that the hearing in my nonAN ear is super sensitive now.  The hearing is so magnified at times that it makes me dizzy or overwhelmed, especially in a crowd or with background noise.  I recently had lunch with two AN friends with SSD.  I was sitting in the middle since I have pretty good hearing in both ears.  One (ColoradoGal) has hearing in her right ear, and the other (Kathleen) has hearing in her left ear.  So, a good seating arrangement so to speak!!!  It seemed to me that their hearing was better than mine (maybe I should have asked).  I was wondering if their nonAN ear has learned to compensate for the SSD in their AN ear.  Before GK, the hearing in my AN ear was better than my nonAN ear.  I feel like the volume is the same in my AN ear, but word discrimination at this point seems to be a bit off.  It's like my AN ear is no longer my "good" ear.  Maybe my ears are trying to battle it out!!!  Hopefully things will settle down soon and my ears will make peace with each other.  Any ideas?  Thanks.  Nancy