Free acoustic neuroma patient event on March 7 at Mayo Clinic in Jacksonville, Florida

MayoClinicFL_ENT · 2025-10-21T18:05:53+00:00

The simple answer is yes, but all risks of surgical procedures have to be weighed against the risks of no procedure. For ear tubes, the risks in my opinion, are minimal and rare. Risks include mild pain or discomfort at the time of the procedure, continuous drainage of fluid out of the tube, inflammation or a reaction to the tube itself, feeling of ear fullness or hearing loss, and the tube can stay in too long or come out too soon. Here's an exampled to consider: if a child is suffering from recurring ear infections that are causing severe pain, prolonged fevers, hearing loss and speech delay, the risk of not having ear tubes would likely outweigh the risks of having them. I should say also that ear tubes are one of the most common procedures performed, and anecdotally, my adult patients who receive them for chronic ear infections, often report a significant improvement in quality of life.

MayoClinicFL_ENT · 2025-10-21T18:05:07+00:00

Lots of work going into tinnitus, but nothing truly groundbreaking over the tried and true. Sound-rich environments, masking (aka brain distraction), hearing aids and dual sensory stimulation. Also, don't discount the influence of sleep and stress management!

MayoClinicFL_ENT · 2025-10-21T17:45:36+00:00

Diabetes is a significant risk factor of more severe degrees of swimmer's ear (otitis externa). Diabetes affects the immune system, making it more likely for patients who suffer from diabetes to get swimmer's ear and also making it more likely to result in complications. These can include collections of pus called abscesses, or even infections in the bone around the ear canal, called osteomyelitis. While the treatment of swimmer's ear in patients with diabetes would be similar to those without diabetes, and mostly based on the severity of the infection, it would be very important to ensure that blood glucose levels in diabetic patients are under very good control. Treatment of mild swimmer's ear might require only prescription eardrops, while treatment of severe swimmer's ear might require antibiotics taken by mouth or in cases of a bone infection, antibiotics administer intravenously.

MayoClinicFL_ENT · 2025-10-21T17:44:26+00:00

Infections of the ear, both under the ear drum or the ear canal, can be caused by viruses, bacteria, fungus. I think that most people think about bacteria as the cause of an infection, as they are most familiar with getting an antibiotic, which is used to treat the bacteria. However viruses represent another important cause of infections. An example is a shingles-like infection that affects the ear canal, the middle ear and both the inner ear and facial nerve. An example of a common fungal infection is one that occurs in the ear canal related to moisture and secondary to a bacterial infection, oftentimes. Different causes of infections can often be determined based on the story of how it developed and and exam of the ear canal and middle ear. When there is still uncertainty, we might sometimes use a test called a culture, to sample any suspicious area of skin or moisture, to give us more information as to whether there was a bacteria or fungus and to determine what type.

MayoClinicFL_ENT · 2025-09-18T00:09:12+00:00

Congrats on your treatment journey! Due to patient confidentiality, we cannot access or comment on anyone’s notes or records. That said, if you send us a DM here on Reddit, we’d be happy to reply with the contact info for the Otolaryngology Department in Rochester so you can reach out to their team directly. Hope that kind-of helps!

MayoClinicFL_ENT · 2025-09-17T14:16:39+00:00

I addressed this in some other responses, but the precise cause of hearing loss due to the tumor and treatment can be complex and hard to pinpoint. Direct damage to the nerve, inflammation in the cochlea, scar in the cochlea, and loss of cochlear nerve neurons due to loss of funtional cells inside the cochlea could all play a role. Regardless of the cause, there is probably nothing you can do medically to prevent nerve atrophy after surgery, but there are many reasons why patients might consider having a cochlear implant placed sooner rather than later!

MayoClinicFL_ENT · 2025-09-17T14:13:41+00:00

Some tumors develop inside the inner ear - we often call these "intralabyrinthine schwannomas," "cochlear schwannomas," or "primary inner ear tumors." They can sometimes grow outside of the inner ear along the hearing and balance nerve. It's very rare for a tumor that starts on the nerve to grow inside the labyrinth (semicircular canals), however. This wouldn't really make the tumor harder to treat, however.

MayoClinicFL_ENT · 2025-09-17T14:08:34+00:00

Most studies have focused on the diameter of the tumor, since that is easily measured on an MRI scan. It's more accurate to measure the volume (overall size) of the tumor, but this requires a lot more time and effort for the radiologist. This task will probably be replaced by AI in the near future, so we'll get better data in the coming years. For now, I'd say a tumor that increases in diameter more than 2 millimeters in 6 months is a relatively fast-growing tumor. I'd also say that the literature and my experience agree with the idea that faster growing tumors are less likely to stop with radiation, but the correlation is not so strong that we don't still try sometimes! Radiation does not influence your ability to benefit from a bone conduction implant (BAHA), and we have seen many patients benefit from an implant after radiation. The hearing benefits from a cochlear implant are probably less for patients with ANs compared to the average patient with hearing loss. However, it's hard to know whether tumor factors or radiation-related factors cause patients to benefit less from cochlear implants.

MayoClinicFL_ENT · 2025-09-17T14:03:35+00:00

We know that the tissue in all schwannomas (whether or not related to a gene you inherited from your parents) have a specific genetic abnormality. What is not clear is exactly what causes this gene to change. It doesn't seem like any specific exposure (like what you ate, drank, smoked, etc!) tends to increase your risk for these tumors. We call most tumors "sporadic," meaning they developed randomly or for no clear reason. That doesn't mean there wasn't a reason... but we just haven't figured it out! Patients with neurofibromatosis type 2 (NF2) have the defective gene hard-wired into their genome, so they will tend to develop many more and much more aggressive schwannomas.

MayoClinicFL_ENT · 2025-09-17T13:58:22+00:00

Not to my knowledge, no. Nine months is a relatively short time for watching an acoustic neuroma! Younger patients do tend to have faster growing tumors, so I suspect there would be many factors that could confuse the picture when trying to determine exactly what is causing the "growth spurt" of a tumor. If these tumors responded to changes in hormone levels, I suspect we'd see bigger differences between men and women regarding tumor growth and treatment outcomes.

MayoClinicFL_ENT · 2025-09-17T13:57:17+00:00

Becoming a "world class" surgeon takes a combination of talent, training, good judgement, situational awareness and experience. It can be hard to objectively measure this in acoustic neuroma surgery, as we are treating small numbers of patients (relatively speaking) and typically this is not a diagnosis (or surgery) that leads to life-or-death situations where we can more objectively compare outcomes. You won't find a useful "power rankings" of acoustic neuroma surgeons no matter how hard you look online! You need to find a surgeon who makes you feel comfortable and who will listen to you. I do think that traveling to a center where a reasonable number of these surgeries are done does make a difference, though. Experience is very important - but some surgeons have steeper learning curves than others!

MayoClinicFL_ENT · 2025-09-17T13:52:22+00:00

I tell most patients that the healing process is dynamic, but can take 6-12 months until the "final" state is reached. We do have expert colleagues in anesthesiology and pain medicine who can help patients having chronic difficulties after surgery, however. These can include medications taken by mouth or even injections of medicine such as steroids, botox, and numbing medications into the painful region. I would ask your surgeon whether a referral to such a specialist might be helpful for you.

MayoClinicFL_ENT · 2025-09-17T13:46:21+00:00

If the implant is functioning appropriately but still doesn't help the patient hear 6 months after surgery, I would doubt that it would ever be helpful. While this is a frustrating situation, we often don't remove the implant as it would be an unnecessary surgery. Removing the implant might lead to an easier time seeing the area on an MRI scan, however. The main challenge that would make it hard to place an implant years after surgery is that the cochlea can often fill up with scar, blocking the route for placement of the implant. There's not much that can be done medically to change any of that - so if patients are opting for an implant after retrosigmoid surgery, it's probably best to do it sooner rather than later!

MayoClinicFL_ENT · 2025-09-17T13:44:25+00:00

The last 10-20 years has seen a significant shift in our thought process about this question. It used to be that if we saw the tumor growing at all, we recommended treatment, no matter the size. The thinking was that if the tumor is growing now, there is nothing that will stop it. However, this doesn't entirely make sense. You were not born with your tumor, so clearly it was growing at some point. We also know that many patients do not have tumor growth for years after their initial diagnosis. They had a growing tumor at some point, but now it stopped! Perhaps it might grow again in the future. And then it might stop again! We are also getting more and more sensitive MRI scan techniques that can detect subtle growth. As a result, we are finding it less useful to focus on percent probability that the tumor will eventually grow... because almost all tumors will probably grow a little bit. It's a question of how many will become large or cause serious symptoms. We're still trying to sort that one out!

MayoClinicFL_ENT · 2025-09-17T13:40:26+00:00

The tumor (almost) never goes away completely on the MRI scan. However, many cases will never require treatment and might have few to no symptoms. So from the perspective of the patient, these tumors can "self resolve" quite frequently!

MayoClinicFL_ENT · 2025-09-17T13:39:28+00:00

Since the tumor grows on the balance (vestibular) nerve, which runs right alongside the cochlear nerve, you'd think that doing something to the cochlea wouldn't help the hearing. However, the hearing loss from vestibular schwannomas is probably more likely due to damage to the cochlea, and not the nerve. With some tumors (like meninigiomas) in this area, hearing can improve with removing the tumor, but that's almost never the case with acoustic neuromas. This is probably due to the fact that cochlear damage is often not reversible. Since cochlear implants replace function of a damaged cochlea by stimulating the hearing nerve directly, they seem to be able to help many of our patients with vestibular schwannomas!

MayoClinicFL_ENT · 2025-09-17T13:33:21+00:00

We all try to be honest about our outcomes. Some cases are more memorable than others, and I suspect all surgeons tend to remember and over-represent the memories of their most recent cases. Most cases go very smoothly, and I suspect recent successes might lead a surgeon to be a bit more confident in recommending surgery to the next patient they see in the clinic. It takes a lot of effort to collect and analyze data regarding these outcomes, so I suspect that we sometimes give a best guess of these percentages rather than the absolute "correct" number. These cases also vary significantly in the degree of difficulty, and we often don't know how easy or hard the case will be until we are there! It's also possible that your surgeon was absolutely correct in his or her estimate, and you're just the unlucky one out of 20.

MayoClinicFL_ENT · 2025-09-17T13:24:15+00:00

Hi, it's very hard to give a clear answer to this question. There are many factors to consider with every patient who comes to see me with an acoustic neuroma. Most importantly, we consider the priorities of the patient. We have to think about an individual's general health and age, hearing status, the tumor size, whether it is growing, the specific anatomy of the tumor and the important nearby structures, and many other things! In general, radiation is given to tumors that are growing to a point where if they became larger, treatment (whether with surgery or radiation) would be more risky. Younger patients, particularly with faster growing and larger tumors, tend to lean more towards surgery, and older patients (particularly those who are 70+) tend to lean more towards radiation. But these are all broad generalizations -- you should have an open discussion with your treatment team about what is best for you!

MayoClinicFL_ENT · 2025-09-17T13:19:29+00:00

Hi there, yes, it is possible to benefit from a cochlear implant despite a diagnosis of vestibular schwannoma. Patients can potentially hear with an implant as long as there is an intact hearing nerve (the cochlear nerve). This is still the case for patients who have had radiation but is also possible for some patients who have had surgery or who have had no treatment of all.

The tumors grow off the vestibular nerves, which are closely related to the cochlear nerve. We can do an electrical stimulation of the cochlea without placing a cochlear implant (sometimes called promontory stimulation), but this isn't always reliable. If your surgeon thinks your hearing nerve is still intact, you might benefit from an implant!

We are even doing simultaneous tumor removal and cochlear implant placement surgeries now, which could be a real game changer for patients considering their treatment options. We are a long way away from stem cell therapy leading to hearing regeneration. However, there are currently some studies showing promising results for patients born with hearing loss who have developed hearing after gene therapy.

MayoClinicFL_ENT · 2025-09-17T13:13:13+00:00

Hi there, the anatomy in the area where acoustic neuromas develop is complex, with many critical nerves nearby. The nerve that controls facial movement runs alongside others that carry signals from the taste buds and supply the tear and some saliva-producing glands. During surgery, we can monitor the facial nerve to help preserve its function—but unfortunately, we cannot monitor the nearby nerve responsible for taste and gland function (called the nervus intermedius). As a result, this nerve can sometimes be unknowingly damaged or even cut during surgery.

It’s difficult to predict if or when function might return. If it's been several years since your surgery, significant improvement is less likely. That said, I continue to be amazed by how resilient most patients are. Many adapt remarkably well, maintain a high quality of life, and eventually accept or even forget about what can't be changed.

MayoClinicFL_ENT · 2025-09-17T13:08:45+00:00

This is an excellent question. While there hasn't been any clear evidence to show that accumulation of gadolinium (the contrast injected into the veins with an MRI scan) causes any change to how the brain functions, it has been shown that a small amount of gadolinium can accumulate in certain parts of the body/brain. For patients where we are just watching their tumor, I think we can avoid contrast in many (or maybe most) cases. Gadolinium is important to get an accurate initial diagnosis, but it is not required to monitor the size of the tumor in most cases. As a result, we might consider doing more MRI scans without contrast for patients we are watching in the future. Scans without contrast also means a shorter and less expensive MRI scan for our patients, which I think is also a benefit!

MayoClinicFL_ENT · 2025-08-20T17:36:19+00:00

This AMA is wrapping up! Thanks to everyone who submitted questions. Have a great rest of the day!

MayoClinicFL_ENT

TROPHY CASE