ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: redleg25 on September 12, 2019, 03:19:57 pm
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Hello All,
I'm new to the "club" with my 1.1 cm AN and I'm 41 years old. I have some of the usual symptoms, including hearing loss, tinnitus, and mild vertigo. I also have developed a troublesome sensitivity to some high pitched sounds. I'm currently in W&W mode and have my second MRI in a couple of months. My doctors seem to be pushing surgery, but that doesn't sound like a great option to me, especially when compared to Gamma Knife. I've been reading through the forums for a while now, and I still have a million questions. However, in the interest of brevity, I'll just hit the highlights...
1). It seems that no matter what I do, it's about 50/50 that I'll lose all hearing in my AN ear. Is that about right? I know everyone is different, but it seems that between surgery, radiation, or W&W that my odds are about even. Preserving my hearing is my top priority.
As I am leaning towards radiation, is there anyone here that has had Gamma Knife and preserved their remaining hearing?
2). After doing lots of reading, I don't see many people complaining about noise sensitivity. Is that an unusual symptom? High pitched sounds (like my infant daughter screaming) are piercing and almost force me out of the room.
3). Has anyone noticed a correlation between blood sugar and AN? I have been dieting recently, trying to keep the dad bod in check. By lunchtime most days I am really hungry and I've started getting the shakes, which never used to happen when hungry. Anyway, on those days, about an hour after eating a reasonable meal, my vertigo kicks in. That's really the only time it happens. I haven't seen much discussion about food/blood sugar affecting symptoms, so I was just wondering if I missed those topics. Obviously, I've altered my diet to keep this from happening, but I find the possible correlation interesting.
Thanks to anyone who takes the time to read this and offer any answers.
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Hi redleg25 :-)
I am also kind of a newbie, having been diagnosed this past May with a small AN. I'm sure other veterna posters will chime in but I wanted to at least say hello. :-)
I went to an initial ENt appointment in my city with THE guy who everyone refers to, and he said to do watch and wait for six months, get a followup MRI, and then we would discuss treatment. Meanwhile, he referred me to this site, and to a zillion other physicians for various things, which I have taken no action on.
I got a second opinion from a center of excellence for ANs out of state,a dn they don't even operate on small ANs, because they believe the risks outweigh the benefits at this stage. So, different physicians have different approaches. I like this second one better.
My symptoms are very mild--tinnitus in the affected ear, a feeling of fullness, and mild balance issues mostly when I am over-tired or when I've been driving for a while and I just get out of the car. It always takes several seconds for me to get my bearings. About the noise sensitivity--I definitely have it, but it is hard to describe. I just get edgy when confronted with high-pitched sounds or when stuck in a loud, crowded room with bad acoustics.
I, too, have a response to sugar. If I have a blood sugar spike or eat a candy bar, I immeditately get a higher-pitched, different kind of ringing than I typically live with. It lasts anywhere from a few seconds to part of the day. I noticed that connection early on.
I wish you the best and this is a great place to come and read and learn. It can also be overwhelming, so pace yourself. :-)
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Redleg25 -
Welcome to the club no one wants to join.
Everyone's AN journey is different. That being said, here is what I can tell you about my journey that may be reassuring?
I had definite sensitivity to certain pitch sounds. I practice yoga once a week as one of my challenges to my balance. At one class, the instructor had on music, and at once point (during shavasana), it became so intolerable that it brought tears to my eyes. I basically had to run out of the class to get away from that pitch. So you are not alone. Unfortunately (or maybe fortunately!) my tumor had a growth spurt and now I am left with no serviceable hearing in the AN ear.
As far as hearing outcomes with Gamma Knife, I found this medical study.
Outcome of hearing preservation related to tumor morphologic analysis in acoustic neuromas treated by gamma knife radiosurgery
https://ro-journal.biomedcentral.com/articles/10.1186/s13014-017-0875-z
I had Gamma Knife in July, but my hearing was already gone at that point. In 5 months it grew 2mm in one dimension and 1mm in another. I am kind of dreading what will happen in January when the dying tumor swelling hits. Steroids are not fun, but I also need to be able to walk around!
I wish you success on your journey. You have a great resource here with all our collective experiences.
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My thanks to both of you, Sharky and bfoley. It sounds like you both have it pretty rough with balance issues. Fortunately, I have been spared that part, so far anyway.
Thanks for the link! Very interesting read. I was already leaning towards Gamma Knife, and this article definitely supports that direction. Sounds like I have a good shot at hearing preservation if I nuke this thing while it's still small and I still have some hearing intact. I also really like the part about possibly decreased tinnitus. To me, that is probably the biggest kick in the pants about this whole thing - even if you lose all hearing, you still have the tinnitus! Thanks nature. :-\
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Hi redleg. Sorry you had to join our club. This site can be helpful, but remember its always anecdotal and never substitutes for a doctor's advice. I'll respond to a few things you mentioned:
I'm not sure about the 50/50 chance. It can depend on tumor location and size and surgical approach. For example, a middle fossa surgical approach is usually the best for hearing preservation. I think you and I might be pretty similar. I was 40 Y.o. and had a 1.2 cm tumor. My Dr. said I had maybe a 60 - 65% chance to save my hearing. He did and I'm elated that I chose to have surgery. The problem with middle fossa is that a lot of places to not do it very often, but I'd definitely ask your doctor about it.
I also have a lot of problems with sound distortion and discomfort. My family is big into classical music and when we go to a concert, the flutes kill me! I also have a lot of sounds that are distorted.
Finally, diet can definitely effect balance. It amazing how many things go into the vestibular system: eyes, legs, feet, light/dark, terrain, etc. I often feel the most dizzy after a long day of teaching and only a light lunch. I'm real dizzy before I get my dinner.
Good luck. Feel fee to DM me if you want to converse more about this, especially since it seems our tumors/age/symptoms might be pretty similar.
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Welcome to the club. The important thing is to find what you are comfortable with. I chose surgery, retrosigmoid. I had surgery nov 2016. My symptoms post-surgery are about the same as before. That is to say, about the same level of hearing loss and tinnitus.
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I guess my concern regarding surgery is that my doctor said he basically guarantees full hearing loss. I had to prod him about doing the middle fossa approach. He basically couldn’t care less about it. Sadly, there aren’t a lot of doctors near me to choose from, but I do have a second opinion scheduled in about a month.
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Hi Greece Lover~
Could I hijack the thread just to ask you why you say doctors don't do middle fossa that often?
That is the approach my original surgeon recommended for my small AN.
Thank you!
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Hi - my understanding is that the tumor needs to be fairly small as there is less room to get it that way, and also harder to protect the facial nerve. It may be less common since there are more options available to patients while the tumor is still small.
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Hi - my understanding is that the tumor needs to be fairly small as there is less room to get it that way, and also harder to protect the facial nerve. It may be less common since there are more options available to patients while the tumor is still small.
I ended up going with the translab for that reason and was glad I did. The situation with its placement relative to the facial nerve was really bad. So it sucks that I can't hear in my left ear, but I like that my facial nerve was intact and I have full motion with my facial muscles.
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Wow guys. Well, preserving my facial nerve is my #1 priority...
Thank you for replying.
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My doctors haven’t discussed facial paralysis much. They made it sound extremely remote. Are they sugar coating the odds? Either way, Gamma Knife still seems safest.
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I had two surgeons, an ENT and a neurologist. ENT said 'only 10% chance of a problem' (well, they are pretty good odds). He also said 'you've essentially lost any useful hearing already, so choosing non-translab to try to save it is not wise. Neurologist certainly didn't sugar coat anything. 'You might have facial paralysis, it probably won't be permanent though, might last a few months. We can put this weight thing on your eyelid to help you out if it won't close.' He was the one who pointed out via that translab (and due to specifics of my case, YMMV) there'd probably be better visibility and workability, although he wouldn't really suggest one over the other. Translab did mean a longer procedure. Anyhow I was quite pleased after surgery when my facial nerve was OK.
Doctors sometimes like to do a hero thing: 'yours was the worst case of X I've ever seen'! This is something I've observed over the years with friends and family who've had surgery. Maybe 9 out of 10 times the doctor will tell them that. I don't think this was going on, but can't be certain. I was fortunate to have 2 very excellent surgeons, at any rate.
Mark Ruffalo had facial paralysis, in his case obviously he eventually got over it (after a few months). The prospect was still pretty scary, though.
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Whether you choose surgery or radiation, it is important to find someone that handles AN cases frequently.
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I had two surgeons, an ENT and a neurologist. ENT said 'only 10% chance of a problem' (well, they are pretty good odds). He also said 'you've essentially lost any useful hearing already, so choosing non-translab to try to save it is not wise. Neurologist certainly didn't sugar coat anything. 'You might have facial paralysis, it probably won't be permanent though, might last a few months. We can put this weight thing on your eyelid to help you out if it won't close.' He was the one who pointed out via that translab (and due to specifics of my case, YMMV) there'd probably be better visibility and workability, although he wouldn't really suggest one over the other. Translab did mean a longer procedure. Anyhow I was quite pleased after surgery when my facial nerve was OK.
Doctors sometimes like to do a hero thing: 'yours was the worst case of X I've ever seen'! This is something I've observed over the years with friends and family who've had surgery. Maybe 9 out of 10 times the doctor will tell them that. I don't think this was going on, but can't be certain. I was fortunate to have 2 very excellent surgeons, at any rate.
Mark Ruffalo had facial paralysis, in his case obviously he eventually got over it (after a few months). The prospect was still pretty scary, though.
Ha! My doctor said the same thing about “useful hearing”. Pretty easy for him to say. I’ll go ahead and try to save whatever I can, thank you very much. Comments like that are why i’m getting a second opinion. If I lose the fight, so be it, but i’m going down swinging.
Changing the subject, what does the research say about increased symptoms during W&W? If I do nothing and the tumor doesn’t grow, what are the odds of increasing symptoms?
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My neurosurgeon said that if it doesn't grow, there's no need to do anything.
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I got a second opinion and the other surgeon said the same thing. Everybody's situation is different, but I would say the combination of barely being able to hear in that ear, plus increasingly bad tinnitus, brought me over to the 'no useful hearing' position in my case.
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Sharky (and all),
I think the first answer to my question (about why many doctors don't do mid-fossa) was on the right track: when small, not everyone opts for mid fossa. I think it also is in some ways a little trickier, because they have to elevate part of the brain out of the way (maybe they do that for retro sig, I'm not sure). The numbers I was quoted were not that different on facial nerve outcomes for mid fossa than others.
Where I had my surgery, Iowa City, they specialize also in Cochlear implants, which means they do a lot of mid fossa work, I think.
All decisions entail different types of risk. my understanding is that with W&W or some type of radiation, there is still risk, if not eventual likelihood, of hearing loss. With surgery, you incur initial risk with the chance for better long term outcome with regard to hearing. I had some facial paralysis a few days after surgery, but it went away quickly. That's the risk I took and I'm glad I did, but others obviously make different calculations. For what its worth, Mid fossa also has much lower rates of headache problems after surgery.
the "hero surgeon" point is an interesting one. I'd not thought about that before. But I think it does suggest the importance of a doc/surgeon who deals with these things a lot.
Good luck!
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I had only 50% word recognition in the affected ear. My doctor agreed with me that it was worth preserving so we opted for retrosigmoid rather than translab. I do not remember where I saw it or heard it, but I recall something about the tumor affecting the chemistry of the nerve even if it does not grow.
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Hey redleg,
Welcome. It sounds like others have got your questions covered - just thought I'd add my experience with noise sensitivity.
I have had some really strange and evolving noise sensitivity. For the first 6 months of my hearing loss (which started years after my imbalance first showed up), high frequency noises sounded very strange - almost painful. That has subsided a bit (now I just can't hear them at all; lol). Then, for a couple of months late last year I had some episodes of sound-induced nystagmus. Dogs barking loudly inside a confined area would make my eyes jump. That was not awesome. My tinnitus during this time was also changing - I had some high frequency and then added some low frequency, then developed an addition of a pulsatile type tinnitus.
I'm still W&W due to my particular situation but one thing that's been true for me in the 3+ years I've had this is that the symptoms tend to change. I haven't noticed a diet characteristic myself, but I'll pay attention to that going forward.
Good luck!
Liam
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Hi Liam,
Oh, I still have a million questions. I guess I just need to be patient until my second opinion. The problem is that it takes months (at least for me) to get into see these doctors, so waiting is hard.
I've never even heard of low frequency tinnitus, as mine is very high pitched, similar to a dog whistle. What is high and low together like? Is it two competing sounds? I definitely had never heard of pulsatile. I had to Google it. That sounds awful!! Is it actually a rhythmic? That must be really tough to tune out.
Would you say you're comfortable in W&W? What I mean is, is living with this current range of symptoms preferable to the risks associated with various treatment options?
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Hey redleg.
I totally get that "million questions" thing. When I was first definitively diagnosed with an AN I really indulged my "researcher" aspect and went super deep into everything I could read. I've had consults with man, many of the specialists in the US who are mentioned on this site. In total I've seen more than a half-dozen different neurotologists at as many different clinics. They almost universally agree, which has really helped settle on my course of action. I do think a more normal person would be just fine with a couple consults in most cases.
As for my tinnitus -
It's sort of layered: there's an ever-present very high pitch "eeeeee" which I think is pretty common for us. In addition, then there's a pretty loud "whoosh" in time with my heartbeat: like my own personal sonogram. Sometimes there's a really nasty "siren" type effect - like a "waaahhh" on the leading edge of the pulse. I read somewhere that pulsatile tinnitus is sometimes actually audible to others, and had an ENT try to listen to it with a stethoscope. One looked at me like I had two heads and was then blown away when she said she thinks she could hear it. She brought in a couple other residents who tried; a few said they think they can hear it and others couldn't. Good times. Beyond those two types, there's also an intermittent low tone which comes and goes.
All in all, it's pretty freaking annoying. I listen to a lot of music to try and drown it out. A couple of ENTs have suggested that a cochlear implant, should I be a candidate when it's time, may be effective in reducing the tinnitus. However, since my AN is in a rare spot, few people have ever dealt with more than a handful ANs inside the vestibule, so I get a lot of "I really can't predict" answers.
That said: yeah I'm very comfortable in W&W status right now. Nobody is willing to give me any reassurance that the vestibular symptoms I experience or the tinnitus will improve with treatment, and they are universally certain that, for me, any treatment will completely deafen me on that side: the cochlea is simply too close to my tumor to survive treatment (this applies to both the various radiosurgery and traditional surgical options). Beyond that, though, my own research shows that "doing nothing" has by far the best long term outcomes in terms of hearing preservation, which is my main focus. My AN is outside the IAC and relatively distant from the facial nerve so the usual AN concerns about pressure on the brain or facial nerve symptoms aren't on the radar (fingers crossed). So, for me the plan is to continue to wait & scan and should the AN eventually take out the hearing such that there's no audiological downside I'll probably get it removed and something like a BAHA or CI inserted.
One final thing: I was pretty freaked out and depressed when this all went down last year. I'm much, much better mentally now. I think any of these major medical adventures tend to be shocking, but with time we get pretty good at adaptation.
Hope that's helpful and good luck with your AN.
Liam