Where do I go from here?

[StarryNights123]

Hi everyone! Firstly, I'd like to thank you very much for making this forum a reality. It helped me understand many things with regards to my diagnosis.

I'm a 23 year old male. I've been having left ear problems for about three years now, and each time it has been disregarded as "wax buildup", so all they did was kept washing it out.

To clarify, I have hearing in my left ear and the audiometry shows normal levels of hearing. However, with regards to my migraines that occur every 2-3 months, I did an MRI just to be sure nothing was wrong, and boy did I come up with something.

I've been called in the room by the radiologist and was told that I have an acoustic neuroma. Immediately after he told me I had a tumor, I fainted, so I didn't have much time to consult with him.

Scheduled to see a neurosurgeon next week. Based on what I've been told, it's non cancerous and there are various treatment methods, of which gamma ray treatment seems to be the best in having less complications.

I'd really like to preserve my hearing and balance. I'm only 23 and I don't feel I'm ready to deal with this stuff. Do you guys have any advice on what to consult with my neurosurgeon, and is there anyone with similar MRI results to me that can provide their experience?

The MRI analysis follows:

An MRI examination of the endocranium was performed in the axial plane using T1W/FLAIR, DWI with ADC mapping, SWI, axial and sagittal planes using T2W/TSE, 3D T2W/FLAIR, in the PC region using 3D T2W/CISS sequences, post-contrast in 3D T1MPRAGE, and at the level of the skull base in 3D T1W/vibe. An MR angiography of the head was done using 3D TOF sequences.

In the left pontocerebellar cistern, a tumor lesion is observed at the level of the internal auditory canal, with a cystic component extending into the canal. The solid part of the tumor measures 20x24x18 mm (APxLLxKK), while the cystic intracanicular part measures 8.5x7.5 mm (APxKK). The solid part of the tumor shows a markedly heterogeneous T2W signal, increased T1W signal with numerous areas of increased susceptibility due to hemorrhage characteristics, and shows heterogeneous enhancement post-contrast.

Consequently, there is a pronounced compressive effect on the pons and middle cerebellar peduncle with their displacement to the contralateral side and a discretely increased T2W/FLAIR signal in the cerebellar peduncle. A moderate compressive effect on the fourth ventricle is observed due to obstruction of the cerebrospinal fluid flow. The compressive effect is also present on the left trigeminal nerve, which extends over the upper side of the tumor. The roots of the seventh and eighth cranial nerves in the internal auditory canal and cistern are visualized, extending over the anterior and posterior sides of the tumor. Post-contrast, no pathologically increased signal intensities are seen in the brain parenchyma or pathological enhancement of the viability of the meninges.

No other pathological changes in the brain parenchyma are observed. The remaining sulci over the convexities and subarachnoid spaces at the skull base correspond to the patient's age, without pathological content. The remaining part of the ventricular system is in normal position, symmetrical, and of adequate shape and width. A retention cyst in the right maxillary sinus with an AP diameter of 16 mm. The cranio-cervical junction and paranasal sinuses show no gross pathological changes. The foramen magnum is wide.

MR Angiography of the Head:
The main blood vessels of the brain show the signal intensity of flowing blood, normal contours, no stenosis, aneurysms, or vascular malformations. Slight widening of the lateral wall of the cavernous segment of the left internal carotid artery.

Thanks very much! This has been a lot of stress for me today.

[mwatto]

Try not to stress - hard I know. Chat to neurosuregon and a radiologist (both should be experienced with AN management). Out of interest mine was same size and also cystic.  The cystic component disappeared after radiation with CK anyway.

 My advice is to watch a few of the excellent videos we have in the webinar library- they are all informative and actually reassuring! As you are young your options may be different. Take time to explore them. You will be ok! I am 5 years out and no issues at all so far.

[UkulelesAreAwesome]

Hi StarryNights. I sure understand your comment about not being ready to deal with this stuff. I was diagnosed 2 years ago at age 54 and felt exactly like that. My tumor is a little smaller than yours and I had the option of surgery or gamma knife. I chose gamma knife. It was really a 1 day outpatient procedure. Recovery was not too bad. Minor balance problem temporarily. My hearing in the left ear was gone before gamma knife.  The tumor can swell up for a few years and that's the point I'm at now. It's touching the brain and brain stem but I really don't notice that. A new symptom I developed is similar to yours in regards to cerebrospinal fluid and the 4th ventricle. My understanding of that is if it does not resolve, a permanent shunt is surgically inserted to assist with drainage. One thing I did not realize in the beginning is that the stress, fear, and anxiety we feel at diagnosis tends to stay with us but we learn to manage it better. Fear increases when we need the annual MRI. I think many people have a successful procedure and move on from it. I'm still in the time period where I don't know if it was a success. You'll be surprised at how much there is to learn. You'll also learn how strong you are on the good days and the bad days. I don't know yet if GK was the right choice but I wanted to try it. I respect those who choose to have it removed surgically. I was not ready for that option though. You've had your world turned upside down but one day you'll feel like you've got a bit of control over things and it'll just be your new normal. When I was diagnosed I wondered what will my life be like with this brain tumor. Life is still good. We make adjustments and learn to be comfortable with a new life even if it's not what we had imagined for ourselves.

[DanFouratt]

Starrynights123,

Sorry you joined our club but welcome.  I stayed in wait and watch for a couple of years as the damage was already done to my ear.  The I started studying my options as I did not want it to get worse.  I have no balance issues. After weighing all the plusses and minuses I went with CK.  Regardless of your decision please have the procedure at a high volume facility.  Also these tumors are slow growing so move forward but do not rush. If you want the information I pulled together when making my decision please email me at Dan4att@gmail.com and I will send it.

Good luck on your decision journey.

Dan

[donjehle]

Thank you for sharing your experience, StarryNights123, on the ANA Forums!  We occasionally have young people in their twenties and thirties share their fears, their concerns, and their experiences, but, unfortunately, many others never post what they are going through out of fear.

Please let us know how it goes after your visit with the neurosurgeon.  My personal recommendation to you would be to speak with a number of specialists.  Neurosurgeons often (but not always) think surgery is the best way to go.  Those who provide radiation treatments think that their form of care is the best.  Sometimes it is confusing when so many specialists disagree, but in the end, it is your brain, and you need to do what you believe is best for you.  Some people, on these forums, will promote the treatment which they chose as the best way to go.  But, in the end, you need to make your own decision.

I wish you the best on this difficult journey!
Don

[StarryNights123]

Thanks for the replies everyone.

I've taken the few days to do a thorough research, and everything on this website is immensely helpful, though I am saddened that most of the resources on the website relate to US doctors and facilities.

I'm from Serbia, and this country is relatively poor. This means that the healthcare system is not good either, and there are no specialized facilities to treat this, but I wanted to hear from the neurosurgeons here as well.

Went to the Gamma Knife facility a few days ago and submitted my documentation, which they took and called a consilium. They told me they would see whether I'm a good candidate for GK and inform me via the phone. I'm yet to receive a call, and unfortunately the doctor there did not provide any real information I need or give me space to ask questions. He only told me that if I did GK I'd probably go entirely deaf in the affected ear and that there's a chance of hydrocephalus.

The next day I went to a neurosurgeon at the main University hospital and we went over the MRI. I still have good hearing in that ear and until a few months ago, it was in normal range, now showing slight decrease. No other symptoms really.
He told me they see maybe 15-ish such cases per year, that he'd prefer a retrosigmoid approach, and that I can possibly as well expect possible facial paralysis, that is a lowering a bit on my lip.

The diagnosis isn't hitting me hard because of the diagnosis, but because of my future plans. I've had an immensely hard time growing up, with parents and the environment I grew up being immensely distant. I worked a lot to move to another city, finishing my uni as a top student, working at my uni and as a software engineer at a local company. Just a few days ago I was looking for jobs in the EU to move to and finally settle with life. The mere thought of having to rely on my parents and relinquish my independence again is horrifying to me.

I used to be 100kgs (220 pounds) at 13 years old. Worked a lot to be where I am today, to be "more attractive" and everything. I would say facial paralysis possibility scares me here the most. Seems like life is literally saying **** you after all these years.

I think the biggest best resource this website could've given me is to seek specialized clinics and experts that deal with this. Doctors here, and especially surgeons don't like a multidisciplinary approach, and that was the first red flag to me. I'm immensely lucky to have health insurance in Austria. I've consulted a few of the best neurosurgeons there and was referred by all of them to a specific professor who specializes in acoustic neuromas and would be able to treat me. I was told they were all looking at my MRI together, so I expect a response soon.

Right now I'm pretty depressed and angry. I was complaining of tinnitus and ear problems to 5 ENTs since 2021, and no one took me seriously (probably because I'm young) and told me I have earwax. Always the same arguments with them that it's not earwax, and none of them even ordered an audiometry. The only indication that I needed an MRI was from a neurologist report when I went to the emergency room for a bad migraine, and he couldn't schedule it because the queues are full. I have that written on paper, but they removed it from my electronic eHealth papers, probably because they don't want to be liable that an MRI was indicated. This means that no other doctor I went to afterwards couldn't see that I needed an MRI.

Glad I took my health into my own hands and paid to get it done, pretty sad that it took so long. I'll make sure to keep you guys updated.

[UkulelesAreAwesome]

Hi StarryNights. I think many of us went undiagnosed for years even though we continued to complain about things. You have a right to feel angry and depressed. We probably cycle through the 5 stages of grief for awhile (denial, anger, bargaining, depression, acceptance). Our independence is important to us too. We earned it. It's not easy to ask for help even on a temporary basis.

[mwatto]

I empathise. I actually diagnosed myself after 2 years of being told that I dont need to see an ENT its "All in your head". Yep it was.

My doctor (and another one I saw) was gobsmacked when after insisting for an MRI my google diagnosis proved correct. By which time it had grown of course. I still get angry.

Worst thing was how they delivered the news: 8 am call from a nurse at the practice: Sorry to inform you but you have a brain tumor. Me: WTF I knew it! What kind? Nurse: 'I am not allowed to discuss it please come in at 5pm and see the doctor'. I waited all day in sheer horror. When I saw her she said: 'well good news and bad news: Good news is you were right its an AN. Bad news: same. But its benign so try not to stress!' Yeah right!!