Serendipity or Symptoms?

[Isla247]

Hi, I am a newbie and was diagnosed around April 2019 with a small AN roughly 6-7mm on my left side. My doctor said that finding my tumour was serendipitous because the symptoms I had aren't "normal". I presented to my GP with pulsatile tinnitus that I had tried ignoring for 6 months until it was becoming hard to ignore and earaches that were becoming more frequent and more painful to the point where it could no longer be ignored and I resigned myself to getting checked out. Long story short, they found the tumour after an MRI. No hearing loss.
 
On my first visit to the specialist, he said I shouldn't be feeling an earache and that symptom must be caused by some other problem - perhaps my jaw. He also said that the tinnitus couldn't be explained. It really put me off because it was these symptoms on the left side that led to the diagnosis. I was told that the best treatment for me was to watch and wait and get a second MRI in 6 months to see if there was any growth.

So in October 2019 I went in for my scan with a positive attitude, thinking all would be well as the earaches had all but disappeared and so had the tinnitus but weirdly I had some tingling around my face. However when I visited the specialist, the tumour had grown another 2mm larger and they can now tell that the facial nerve is involved. They aren't sure whether its growing from the facial nerve or whether the tumour is touching the facial nerve. Still no discernible hearing loss.

The specialist asked me about symptoms and the only thing I had noticed was a burning tingling sensation around the left side of my face nearer to my eye and cheekbone and it was so faint that it really wasn't bothering me. Again, I was told, it can't be the tumour causing that, it must be something else. By this stage, I am starting to get a complex that I am imagining these symptoms!

I was again told that the best thing to do as it is still small and it really wasn't annoying me, would be watch and wait. So here I am in Jan 2020 and I am getting further symptoms and now I am wondering are they real or are they imagined? My next MRI will be in April again to see if the growth has continued. He said I could return earlier if I noticed new symptoms but I now don't trust myself as all my symptoms have been dismissed so far and I personally feel like a fool.

So, if I can run these new symptoms by others who have what I have, I would love to hear if they resonate and I can have confidence in what I am actually experiencing.

*  I have what I can only explain as feeling tipsy drunk (without the drinking) and sometimes I stumble a little but not dangerously so. It comes and goes and is worse some days and other days I barely acknowledge it. I seem to get nausea that co-incides with the tipsiness and the past few days has been the worst I have experienced.

* I have my earaches back again and I have full/pressure feeling in my ear and I am getting headaches in my left temple that comes and goes.

* I still have that tingle/burning sensation on the left side of my face, however I feel it more acutely. It doesn't bother me too much I am just aware that it is there - but completely doubt myself as the dr said it was impossible as it wasn't touching some other nerve that was in a completely different location from where my tumour is.

* Tiredness!! I am so very tired and I just don't know why and I certainly don't feel like telling my specialist because that probably is not caused by the tumour either!

Sigh....

If anyone could let me know if the above mimic's their symptoms I would love to hear from you as I have had my self confidence dashed at this stage.

[MarlaB]

All of the symptoms you have mentioned are common symptoms of an AN....

Have you seen a specialist who has treated MANY acoustic neuromas?

Marla B.

[Isla247]

Hi Marla,

I went to seek a second opinion and the person I was going to be sent to was the exact same specialist. I asked if there was anyone else and was told that "this is the man I would send my children to if they had AN". He is a surgical ENT and looks like he's the only one in my city that people get sent to with AN and comes highly recommended by two other well respected ENTs.

I feel like when I speak with him that if my symptom cant be explained by science then it can't be caused by the tumour and I then question if its real or am I going mad and making things up in my head? He said it doesn't cause pain because those nerves don't cause pain. He said it doesn't cause headaches. He said the facial feeling I get must be from something else because again the facial nerve it is on doesn't cause sensations.

I came across this forum because I was trying to find out if my symptoms are "normal".

I am so confused and am beginning to question my sanity.

Thanks xo

[MarlaB]

If I have learned anything in the past 30 years of symptoms and the past ten years+ since I was diagnosed and treated....

You want to find a treating physician/surgeon/otolaryngologist with A LOT of diagnostic/surgical experience as well as a great reputation in the vestibular schwannoma/acoustic neuroma treatment.

There was no one in my entire county who had a lot of experience with ANs. I did not travel out of state for treatment for a number of reasons.  I did drive almost 100 miles to a bigger city. I personally interviewed 8 surgeons with excellent references at multiple hospitals and surgical facilities (I paid for the second/third opinions out of pocket. It was the best money I ever spent.)

I found the team who made me feel HEARD, BELIEVED, NOT CONDESCENDED TO, and SAFE. I'm not yelling, but seriously, I'm so happy being one of those people who can honestly say there was never a time I felt like my doctor of choice made me feel crazy.

I wish you the best.

[ANSydney]

I feel like when I speak with him that if my symptom cant be explained by science then it can't be caused by the tumour and I then question if its real or am I going mad and making things up in my head? He said it doesn't cause pain because those nerves don't cause pain. He said it doesn't cause headaches. He said the facial feeling I get must be from something else because again the facial nerve it is on doesn't cause sensations.

I would trust your doctor. We on the forum are not doctors.

[notaclone13]

Isla,
The initial symptom that led to the discovery of a 7 mm AN was pulsatile tinnitus. I had noticed the pulsatile tinnitus on and off for several months and attributed it to high blood pressure, but decided to go to the ENT when it became a daily occurrence.   When the hearing test indicated some mild hearing loss in my right ear (which I hadn’t noticed) the ENT ordered an MRI.  In retrospect I had other symptoms such as balance issues and dizziness, but I had attributed them to another cause. I am now 2 years past diagnosis and have significant hearing loss and tumor growth. I have decided to seek stereotactic radiosurgery in the near future. I am now weighing various options regarding where to get treatment.

[Patti]

I have experienced every one of those symptoms and finally the headaches were so bad that I would wake up vomiting. I have heard this stupidity about no headaches, but they are so wrong. Keep searching for an answer!

[Isla247]

Thank you all for your care and taking the time to respond to me. It is really appreciated so very much.

To ANSydney, thank you I do understand what you are saying but I am now starting to wonder that if a doctor hasn't had an AN then can they fully understand all the sensations - not all of these tumours are text book and from having had the time now to read through some of these forums I can see that everyones journey is unique.

I think I confounded him because on my second appointment with him, he said that there are reports of earaches with this tumour but he has no idea why anyone would feel that. I think I have a doctor who sees things very black and white.

Patti, Thank you so much for sharing and letting me know that you have experienced every sensation that I have. I cannot thank you enough as you have restored my faith in myself.

Notaclone13, I am sorry to hear of your predicament and I wish you all the very best with your treatment. I think this is the hardest part of AN. Knowing when is the right time to stop W&W and take action. I am very happy to hear that you were diagnosed with some similar symptoms to mine that gives me relief. I have had a hearing test done and both ears are the same - no hearing loss from about 6 months ago. I don't feel any decline in my hearing but just that full feeling in my ear.

MarlaB, you have definitely given me food for thought. I will have to travel to another state for another doctor as I am in the biggest city in the state and its not that big (I live in Australia). Massive costs to do so and being a single mum of 3 it is not a decision I will take lightly. The doctor said that he works alongside a neurosurgeon when performing these operations so when/if it gets to the time when treatment is required, I will suss out the neurosurgeon as well and see if I feel as though I am in good hands.

Thank you all

[BigJoeBass48]

Hi Sara, I am also a newbie and also feel like a fool for arguing with brain surgeons. Do you mean your AN is 6-7 MM or 0.6 to 0.7 AN? Mine was diagnosed in January 2017 after numerous x-rays on a skull cap machine that had to be from the 1930s at a "specialist" dentist office. They said mine was a fly speck of 0.8 and the MRI a year ago showed it went to 1.2 and they're practically in a panic. The tinnitus is overwhelming at times.

[Isla247]

Hi BigJoe, my tumour is 6-7mm in size. Things are getting worse for me symptom-wise I was having a conversation with a friend and in the middle of the conversation she told me my left eye had drooped. I am also getting extremely dizzy and nauseous. I rang up the doctor to let him know that I have had these new symptoms - as he told me to call if anything new came on - only to be told its not related to the tumour!!! Seems like nothing I have is related to the tumour at all! I am so frustrated right now.

[jami]

One more suggestion, it might be worth trying a phone call vs travel to another city to consult, if you can find someone to provide a second opinion.

[Jean11]

So I am new to this forum and was just diagnosed this month (May 2020) with a 1.4 cm by 1.2 cm acoustic neuroma. Unfortunately my AN was missed nine months earlier because the MRI was done without contrast, therefore, it was never reported by the radiologist and I am now being told that an accurate measurement of the AN on that MRI cannot be made. Therefore, the growth of the AN cannot be determined and the most recent MRI will be used for the basis of monitoring future growth.

I had my first neurosurgery appointment and was told that the best approach at this time is to wait and watch. My symptoms include some right side hearing loss, tinnitus, some drifting gait issues, fullness and pain in my ear and some fumbling with my balance. The surgeon asked many questions about my hearing and I answered as accurately as possible. Based on my answers and without having any hearing tests for him to view, he disclosed that my hearing loss was advanced. Unfortunately, I did not bring my last hearing test from nine months ago, the same time the previous MRI. His office never requested that I bring those prior results. Plan on getting my hearing tested again because I did not like the surgeons interpretation of how advanced my hearing loss was because he implied that no matter what (surgery or wait and watch) my hearing could not be preserved. This because he felt the hearing loss was already advanced. So, would his decision to wait and watch be different if my hearing was better and there was a chance he could preserve was was left? Again, it is not advanced. I can talk on the phone with the phone on that ear. While the persons voice is softer, I can still hear. The last hearing test said mild high pitch frequency hearing loss in both ears.

My problem is that many of the symptoms I described he disassociated with the AN. Said headaches were not related. Also, my tinnitus which is coming from both sides, but more prevalent on left is most likely not related to AN, but from a fall to the head that resulted in some left hearing loss. How can that be if it is coming from both sides, yes louder on left than right? When I asked if I should be concerned about future facial nerve issues if we wait and watch, he said there would be no worry about facial nerve being affected, even though I have read differently.

He is supposed to be the best surgeon for AN in my state and top in his field is the U.S.. So, i wonder why my symptoms were being a bit dismissed and I left feeling more stressed and confused than before I met with him. I am the type of person that likes to have things fixed and I am not a person that does well hanging in limbo. I had all my questions typed up, but because his position immediately was wait and watch, there was never any discussion about radiation or surgery.

Wants to repeat MRI in 3 months and again 3 months after that to track growth. That if AN is continuing to grow and symptoms worsen, then other treatment options would be discussed. But is it everyone’s opinion that waiting until symptoms worsen is the best approach? I believe in this surgeons capabilities and he was a kind person. His work speaks volumes. I just felt that I left with more questions than when I came and I am thoroughly confused. Reached out to another surgeon out of state and will be seeking a second opinion to put my mind to rest. I feel it is important to do the surgery in my home state because all my other specialists are here and they would be coordinating with the surgeon if surgery were needed.  I need to find a way to move forward with my life knowing that the decision to wait and watch is the right one for now. I don’t want to regret this choice, find that it has grown and I have lost more hearing when there was a potential window of opportunity to preserve what I still have left and prevent further problems. Any input would be great!

[ggc]

 I live in Seattle, WA where there we have one of the country's most experienced neurotologists in the nation. He gave me his opinion, but was not offended when I sent my scans to the U of Michigan and also to U CA at San Diego (UCSD) for second opinions (you probably already know that UCSD is considered the gold standard for AN care). All 3 of these surgeons gave me slightly different recommendations! My point is that you must seek out at least two or three opinions. Unless you have a life-threatening tumor it seems more common than not that the choice will be, as one surgeon put it, largely philosophical (treat or watch/wait).

I too have a chronic earache in my left ear and the same type of balance  issues you describe. Also intermittent taste disturbances (sour pennies). After checking these things out with my ENT, dentist and neurotologist, all agree that the symptoms are most likely tumor related. Don't doubt yourself!  That is truly toxic. Find an MD you trust.  Best of luck to you.

[Greece Lover]

This is a great thread with lots of important information and experiences in it. Thanks everyone.

I would just add: Doctors don't know what its like and usually see things through the lens of science.  That's their job.  They also don't always have the best "bedside" attitude in how they articulate what they know to patients. 

I've had face tingling and my doctor also said it's unlikely from the tumor or the surgery.  But he also said that it could be "ghost" symptoms.  And what he meant was that because we get so super sensitive because there's a tumor there, our bodies can sort of create symptoms, or we perceive them.

big picture: the mental side of managing AN is just as hard as the physical side, and doctors aren't always as good at the former.

[tar907]

I have an 8mm tumor on my left side. For me my symptoms are getting worse. I am still on watch and wait for about 10 years now. I see the top specialist at Columbia University in NY . He believes it could be on my ocular nerve and that is why I feel off all the time. I can't drive in multi lane traffic anymore the movement makes me dizzy. I feel nauseas and foggy and tired. I also noticed that my left side of my body has muscular issues but not sure if related. The tinnitus and hearing loss has increased. My left eye twitches constantly. All this time and 3 doctors later, he finally said its from the tumor. I take an Allegra D to ease the symptoms. I thought it was my sinuses but he says its not. I feel like the doctors don't want to believe what we are feeling because it doesn't match up to what they are taught but honestly the more I read comments on here I see most have the same issues.