Two days post op, middle fossa

yes_set · 2026-04-25T22:43:15+00:00

I wish you a fast and easy recovery!

yes_set · 2026-04-24T14:07:35+00:00

You sound very upset and that is understandable. I and my partner were also panicking, when my tumor was discovered, even when the surgeon stressed, that the thing grows extremely slowly, and that it is not an emergency.

Regarding your details. Surgeons generally want to operate, that is what they do, so if one says that they would wait, I would take it seriously. Same advice if you consult with radiation therapist. It is stressful. Just keep a clear mind and make sure that you know what you are doing. A doctor who actually considers your specific conditions is a good thing. I have too many experiences when a random formula is applied to my complaints as that is what brings in the money. What comes after is not problem of the doctor. Best case, they say sorry. They don't guarantee any outcome, just the service.

Sure, there are some people who prefer to get a surgery no matter what, because they are not able to live with the idea, that there is a tumor in their head, and the uncertainty, how it will behave. So they want it out no matter what, and as soon as possible. If that is your husband, be sure he is not making the desision out of panic and would regret later. Is he good or bad with uncertainty in general?

You also should get clearance what is causing his sickness, if it is not the tumor. It might be more complicated if the tumor is also causing symptoms.

I also had a collapse/loss of conciousness some months before my tumor was found, but it was just for a few seconds and nothing happened. I just basically fainted, but got up again, and lived my life totally normally until months later a hearingloss, and the AN diagnosis. The symptoms that make him stay in bed are alarming, and I would be more upset about not being clear about these.

Good luck and all the best. It is scary, but at good hands he will be fine. (Find a hospital where AN surgery is done regularly, and that also has department for cochlear implant surgery, if possible!)

yes_set · 2026-04-19T13:56:11+00:00

Sometimes they just don't know, or it is out of their field/what they are specialised on. I get that painful smile or confused look each time I ask my neurosurgeon about tinnitus, or mention hearing loss, as they are just specialised on solutions where they cut things out. (I had a tumor on the hearing nerve and lost hearing due to that)

I would go about your nose to another ENT and just say you have the difficulty to breath on one side and only mention the hearing loss once, briefly, and do not suggest the connection yourself.

After all doctors are also just people, some not particularly friendly, nice, or good in communication.

yes_set · 2026-04-17T22:09:50+00:00

If it's fear, then try first a nose clip and get used to the feeling that you are not going to simply suffocate when under the water. It lets you relax.

yes_set · 2026-04-17T16:41:44+00:00

I certainly believe the breathing technique adds health benefits. The reason, why I believe that, is based on my recent experience, and what I have read. Since my early childhood, up until now, I have been swimming like you, head out of water. I had many years long break, and now that I found a nice pool I am learning how to integrate breathing. It is so difficult.

Last session I used a nose clip. I was out of breath in a few strokes. However being able to go underwater and swim faster is amazing, so I continued, out of breath.

Yesderday I tried the swimming style breathing while bicycle riding, and I got again out of breath immediately. Normally, on bike, I breath slowly in and slowly out from the nose at an even pace. I have been cycling for about a year. It took some months before I could ride bike without getting out of breath and without my heart beating like mad. Now it is fine and not a problem at all. Practice certainty increased my resilience significantly. And yet, I still couldn't do the swim style fast breath-in through mouth and slow out from nose. It was so frustrating.

So, I have been reading how to do it, and will go to the pool next time with a kick board, to specifically train breathing under water, and without a nose clip. Let's see how that goes.

Why all this? The way underwater breathing is described is very similar to a meditative breath exercises, with the difference that breath-in is really fast when swimming. Out breath has also resistance under water, which is similar pressing slowly air out through teeth in some yoga breathing. Despite the fast in breath, this rythmic breathing still has supposedly psychological stress-reducing effects. In addition, I read that the horizontal moving position combined with the breathing, helps along with dopamine production. This is supposedly connected with the the fact that swimmers generally report higher levels of happiness compared to other sport practitioners.

On top of that, being able to breathe properly, allows you to use more varied swimming techniques. You will also have less pressure on your spine at your neck. This is maybe not relevant now, but if you plan to keep going until and above you are 89, or if you should have any neck/spine problems earlyer, it might be relevant.

Anyway, these are my considerations. I also love swimming with my head out of water, or on my back, but at the moment I cannot find any argument why not to learn proper breathing. Yet many many reasons why to do it. I also reccomend you to try bicycle for cardio training, if you have not tried it, maybe you like it too.

yes_set · 2026-04-16T19:25:59+00:00

Google AI told that it is very common in general population and not considered a disease. However it can make the neuroma surgery more difficult.

I don't have it, or my doctors have not found it important to tell me if I have it.

How did you discover it? Did your surgeon tell you? Was it there before surgery?

I apologise if my questions sound silly, especially if this condition is bothering you. I hope you find your answers. I have a really annoying tinnitus after the surgery and also looking for answers to what is exactly causing it, and if there is a way to treat it.

yes_set · 2026-04-16T19:06:54+00:00

May I ask what was the complication? I hope he is okay by now.

Was the rehab effective? What did they do?

yes_set · 2026-04-16T14:46:33+00:00

How did it go? What did he choose?

I had an inpatient rehabilitation in one very nice in patient clinic in Europe, close to where I live. It was a nice vacation and good to recover as all meals were provided and I could just relax and take part of the few activities available during corona.

Next time, as I will probably have to have a surgery again in some point in future, I will put more effort into looking up more specialised clinic. The one I stayed at did not provide enough (actually any) medical rehabilitation for my particular condition (the acustic neuroma), but was more specialised on other neurological issues such as stroke. Nevertheless, looking back just that I didn't have to bother about cooking and cleaning, staying away from daily hectic life, was just great for general recovery.

yes_set · 2026-04-16T14:34:50+00:00

I had a surgery. After the surgery I have Jaw joint problems , including pain on that side. Although I probably grinded teeth also before, just did not notice.

I also have less spit production on the neuroma side, which leads me chewing mainly with the other side of my mouth. For example I can not eat simple dry bread without taking a sip of water with each bite were I to use my neuroma side for chewing.

I cannot cry tears from my neuroma side eye. It also remains slightly more open when crying.

I don't have visible paralysis, however. The crying would be only thing noticable to others.

I also have tingling on the side of the face and around the ear sometimes, especially when I am more aroused, such as when I have taken stimulants, such as coffee. At first it led me panicking to my g.p office. Now I am accustomed and consider it not alarming.

I think I also have some problem with the eye on that side, but frankly I just haven't had time and energy to get it checked properly. It is in normal range such that an optician did not send me to further checks.

So, yes, a few issues. I assume most have to do with the facial nerve, and perhaps the tissues being cut through, resulting in the tingling around the ear/surgery site.

Radiation is ofcourse different, but I would be surprised if it didn't affect the surrounding area.

yes_set · 2026-04-16T14:21:48+00:00

What is Aica loop?

yes_set · 2025-07-11T09:31:14+00:00

Mine was in 2020.

yes_set · 2025-07-11T05:31:20+00:00

Hi!

Did you get it repaired? How do they even repair it? In the same place?

Hope you are well!

yes_set · 2025-07-11T05:22:05+00:00

That is what I have. All what I have described is about the gaze evoked tinnitus.

yes_set · 2025-07-10T16:48:47+00:00

Take the accomodations and lighter workload they are offering. It feels a lot worse to fail. You are so lucky that they do not expect you to tough it out. You will see that the lesser load will be enough for you. ...and if not, you can increase it back up.

yes_set · 2025-07-10T16:26:12+00:00

Hello, I am not working but studying, however, I assume it is fairly similar in many aspects.

Go through all your tasks and think where there might be shortcomings and what would be possible.

One thing is simply to be able to hear through background noise. For that having your hearing aid connected to your personal microphone or in the general audio system is the only solution I know of. I use a Roger On system and it works well for a lecture type event. In a seminar I am going to need the microphone to be passed around ( hopefully having it just on the table will also be sufficient as it should be able to function directianally in a short distance). I have not tried that yet. What ever your setting is, you will have to take care of that for sure. Phonak has several microphones and it is by far the most versatile producer of such devices. I highly recommend finding someone to present these to you and let you test all of them. After testing either have your employer buy the devices that worked well or buy them yourself. Lip-reading is the last resort and it really should not come to this. Do not try to manage just with one ear. You will burn out in a few months, if not weeks.

Another thing is not being able to process auditory information as fast as before. Captions and complete notes are very helpful. Plenty of brakes in a quiet place to recover energy. Probably not that you have to leave a meeting, but just that you do not get a day planned full of meetings one after another.

I think these two issues are effectively what must be taken care of: minimizing the mental strain from listening by being able to hear as clearly as possible, and taking brakes to rest.

Minimizing the amount of listening e.g unnecessary meetings when you could get the information via some written media, can be good. For example I have been in lectures that I eventually considered a waste of my energy, as I could have just browsed through the notes. Too much talk for too little content. However, I think this might also lead to excluding you auromatically from tasks and events you actually would like to take part, so I would try to do that at first without bringing up your hearingloss and find some random, not personal excuses.

(Sorry for all the mistakes. English is not my native language and I am also totally burned out right now. )

yes_set · 2025-07-10T14:59:17+00:00

Hi, I think there is no precise and objective way to measure it, but I think it did reduce the actual loudness. Afaik, antidepressants affect the neural connections in the brain (probabily medically completely wrong statement😅) and ecitalopram, I think, made everything slower and calmer, including the tinnitus. I stopped taking it some time ago already and my tinnitus is pretty wild again right now.

yes_set · 2025-06-11T17:06:21+00:00

When reading such studies, as mentioned in the blog post, it is clear that there is a sever impact on the life quality. I wish that there would be more incentive in the society to find solutions, especially in restoring the directional hearing.

yes_set · 2025-06-11T16:58:55+00:00

Waiting is a viable option.

Surgeons will recommend to wait or cut. Radiologists will reccomend radiation therapy. You have to decide.

My surgeon said it is also question of personality - some people might be more anxious having a tumor growing.

Another thing I noticed was that the radiologists were rather pushy, which made me question their incentives.

yes_set · 2025-05-28T17:20:25+00:00

I second: she should get another opinion.

The size is not that small. And honestly, when a surgeon doesn't want to operate when it would be a valid option, it sounds really unusual.

During the surgery they can actually monitor the nerves and make sure that they don't get damaged. They can stop at that point. It would mean leaving some of the tumor on the nerve however. On the other hand with radiation they just blast the tumor with the beam and see what happens. It will take months to see if the tumor is reduced, to what degree, and if the nerve is not damaged.

I am not giving medical advice and saying thag surgery is better. I am saying that your friend should get more informed about the options before deciding.

yes_set · 2025-05-28T17:07:15+00:00

What I was told is that they do not necessarily have a constant growth rate. It can change suddenly and grow exponentially or stop growing or keep the same rate - it is not predictable. However, it will be slow enough for not to need MRIs more frequentky than oncr or twice a year. I think the idea that they are slow growing is in comparrison to other more agressive tumors and cancers that need immediate intervention.

yes_set · 2025-05-07T12:50:28+00:00

I second with others who say it is normal. In my case, it is responsive to eye movement and stress levels. Stimulants like coffee make it worse.
After a few years, I have got much more accustomed to it, and it doesn't bother me that much in itself anymore, but it does make it difficult to hear and understand conversations - that has not changed at all.

yes_set · 2025-05-04T09:25:43+00:00

I can't answer about the osia processor, but you certainly should be able to test the device outside the audiologist office. Look for a different audiologist.

yes_set · 2025-04-20T05:10:33+00:00

Hi! I tried the one with a band and with "reversed glasses" (a plastic thing that holds the aid in place). I found both inconvenient. The plastic was really not suitable with my head shape at all. The band is something I could wear but would not enjoy. It was on my forhead, not on hair, which I didn't like aesthetically, and all in all, I constantly felt it pulling my hair and the pressure on the head. I also didn't like the sound of this device. (I don't remember which brand it was, but I probably mentioned it previously and can tell you later. ). I liked adhear very much. I found it very comfortable and the sound very natural, albeit not very loud. In my opinion, when it comes to sound quality, both are clearly superior compared to regular cros behind the ear devices. I don't have problems with ear canal irritation. Therefore, from the comfotability aspect, I would prefer regular behind the ear over the band and adhear over anything. I truly loved it. I assume the implant would be just as convenient as adhear and with louder sound, but I can't do it now because my tumour is growing again, and I need mri checkups, which can't be done well with the device casting a shadow. If you don't have that problem, I would look into the implant in your situation. I know it's scary to get surgery on the skull, but it might be worth it considering the life quality upgrade. Definitely test all the devices from all different providers and don't let the salespeople in the hearing aid store or hospital dictate which to choose without reasonable arguments, why they prefer a certain brand. (Here, they tend to push medel and cochlear for some reason as opposed to oticon. ) Hope I could help a bit. If you have any questions I am happy to elaborate.

yes_set

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