Minimum symptoms for a diagnose?

[Kain]

Hi all!

I am new to this forum, and I must start to say that I am very glad that I found you. I am not from the USA, and in my country I have seen no such organization as yours. I can image that anausa.org can make a difference for a person that is affected by AN!

I ask the question that bothers me, but first you should know some background. During 2006 I first told a nurse that I was troubled by a tension-type headache. During 2007 and probably until August 2008 I used exactly that word, tension-type headache. Later it was more like ‘pain in head’. I started to use the words ‘like a pressure on my face’. Late 2008 I meet an ENT, and a MRI was done (no contrast), and with that a secondary finding was made, a tumor on one of the hearing nerve. The journal says something like 'In the meatus acusticus interna there is a callus, length 10mm compatible with an Acusticus Neurinoma'.

Today, I still have no tinnitus nor dizziness, and I don’t know if the tumor is growing; I have described my symptoms not as numbness, but as pressure on my face, and also pain in those areas, pain that is affecting me seriously. Numbness is often used, as I see it when diagnosing AN, but still it is not my best word. Still, ‘pressure on my face’ is a better word, just as you several times in each day was hit by a soccer ball on your face, or as you run into a barn wall a few times.

Now come my question, can AN develop with hearing loss or dizziness symptoms so small that they are not noticeably? I have read somewhere, that in about 90% of all AN diagnoses the hearing loss/dizziness is well known, but what about the remaining 10%? Or, do always the hearing loss/dizziness come together when diagnosing AN? In other words, must I wait for hearing problems or dizziness, before I (or the docs) know for sure what my problem is?

Kain

[epc1970]

Kain
I had no symptoms until my tumor was 3.8 cm-the only way to diagnose an AN for certain is to have a MRI w/contrast. I would suggest you ask you Dr to set one up-the smaller your AN at diagnosis, the more treatment options you have open to you.
Erin

[Kain]

Kain
I had no symptoms until my tumor was 3.8 cm-the only way to diagnose an AN for certain is to have a MRI w/contrast. I would suggest you ask you Dr to set one up-the smaller your AN at diagnosis, the more treatment options you have open to you.
Erin

Thanks Erin!
I have a question for you. 'with contrast', does it mean that the patient do receive a via injection or syringe something that makes the MRI more reliable? I had no such thing into me, when the MRI was done. I only was put on a bed, and into the fantastic machine. Is a MRI w/contrast a 'must' to diagnose AN for sure, or could it be done without contrast? btw Erin, did you have any problem with the hearing or dizziness just before the MRI, ie what was the reason for you to enter the MRI?

[Sue]

Hello,

I had pressure, and the only way I described it was that "my ear needed to be popped", rather like going up in altitude and having that constant pressure with no relief.  It was in the ear area however only.  That, thank goodness, went away.  But my AN is involved with my trigeminal nerve and I have numbness on my face, on the AN side.  It really is just the skin, but it does have a very weird feeling.  

Correct me if I'm wrong, but it sounds like you got a diagnosis.  Wouldn't that be the "callus, length 10mm compatible with an Acusticus Neurinoma".   Acoustic Neuroma/Vestibular Schwannoma starts out, as with any tumor growth, one cell at a time.  I realize now that I did have some vestibular issues long before I knew I had an AN.  But it was very subtle.  Mine grew quietly for about 15 years before it finally caused enough trouble that I noticed it.  Tinnitus was the first symptom I had.  Some people have very small AN's but they cause trouble quickly, probably because of location or that particular person's sensitivity, or for whatever unknown reason, so they find out about it sooner.  Other people have no symptoms until the AN is middle sized, like mine, or huge, as in over 4cm.

Yes, you need to do the MRI with contrast.That is given as an IV solution into your arm.  That will make any AN tumor glow like a lightbulb in your head!  And then, everybody will know for certain and you can figure out a course of treatment.  Since it is probably small,  you may decide to pursue radiation as an option.  Also, the doctors may suggest watch and wait and they will monitor your AN for a couple of years to see it's growth rate and to just keep an eye on it.  Or you can do the microsurgical route.  Please make sure that you have a very qualified, experienced team of doctors.  

Wishing you all the best,

Sue in Vancouver, Washington USA

[lori67]

Hi Kain.

I'm glad you found the forum.  I'm sure you'll find it very helpful.

I didn't have any hearing loss or dizziness prior to my diagnosis of AN.  The only symptoms I had were headaches that felt like sinus headaches with a lot of pressure and then I got a numb feeling one one side of my face.  I'd say it was like novacaine you get at the dentist when it starts to wear off.  It wasn't completely numb but it was completely normal either.

The contrast they use during the MRI with contrast is put in via a needle - just a little one in your arm and it doesn't take long.  Some AN's do show up without the contrast being used, but they show up a lot better and more accurately with the contrast, so if you can, I would see if you can get one of those done.  That would tell you definitely if there is an AN present.  You don't have to wait until your symptoms get worse.  The earlier they make the diagnosis, the more options for treatment will be available to you.

Good luck!
Lori

[Kain]

...
I had pressure, and the only way I described it was that "my ear needed to be popped"
...
Correct me if I'm wrong, but it sounds like you got a diagnosis.  Wouldn't that be the "callus, length 10mm compatible with an Acusticus Neurinoma".  
...

Hi Sue, and thanks for reply!

The problem I have had for a long period, is that the docs have not connected my symptoms with the results of the MRI. According to them, they still need some more proof. Btw, they have blamed my diabetes, and also another mechanical accident and I have not been satisfied with those explanations. I guess, what they have done is they have put me on 'wait and see', but I have never really realized why. I am now referred to a neurosurgeon, but still waiting for him or her. None has until today, confirmed that my problems is caused by the AN, and that bothers me. I must stress clearly that the lack of knowledge for me, is worse than knowing that I may suffer of side effects AN for a long time. I have in fact suffered a quite long time already!

I love your way of describing your symptoms, Sue, it really wants me to fly again, curiously, but, as I said, I feel on pressure on the front side of me face, never in the ear area.

Kain

[Kain]

Hi Kain.

...
The only symptoms I had were headaches that felt like sinus headaches with a lot of pressure and then I got a numb feeling one one side of my face.  I'd say it was like novacaine you get at the dentist when it starts to wear off.  It wasn't completely numb but it was completely normal either.

...
You don't have to wait until your symptoms get worse.  T

Hi Lori, and thanks for reply!

I have never had a sinusitis, or a sinus headaches, which I think is the same. I do observe that you use the word 'pressure', that is the exact same word I have used. I guess my next MRI is with contrast, and I want it to be done NOW!

I see I have atleast two positive replies out of 20 reading of this thread, which maybe indicates that atleast 10% of all diagnosed AN dont have bad hearing or dizziness. I am still curious of that number.

Kain

[Jim Scott]

Hi, Kain ~

Welcome - and thanks for posting your questions. 

As others have previously indicated, you can certainly have an acoustic neuroma without hearing loss.  An MRI - with the Gadolinium injection for 'contrast' - is essential.  I understand that the physicians you've consulted have not wished to make a clinical diagnosis but the enhanced MRI should make the presence of an acoustic neuroma quite obvious and then, you can talk about your options for treatment.  I hope you don't have an acoustic neuroma but if it turns out that you do, we're here for information, advice and, most of all, support. 

Jim

[Pooter]

Like Erin, I didn't have any noticeable symptoms until mine was around 3cm and causing more than just hearing loss.  Had there been a reason to do an MRI with/without contrast prior to then, then it likely would have been spotted.  While many AN's can be seen without a Gadolinium contrast, the contrast leaves no doubt what you're dealing with..

As an example, here's my diagnosis MRI with contrast:



Can you pick out the AN?  I'll bet dollars to donuts that even all of the non-Dr's in the house can pick it out..  It just make it THAT much simpler to see.

I hope that you get a definitive diagnosis from the doctors and then you can begin to discuss your options with them..  Although, I'll tell you the fact that they're aren't experienced enough with AN's to know that an MRI with contrast is in order, I'd be very leery of using those same doctors to treat the AN if you're diagnosed with one.  But, that's me..

Regards,
Brian

[epc1970]

Kain
Just to answer your question: I had no symptoms until I had a sudden hearing loss w/tinnutus-literally woke up one morning with it and did not have it the night before. Based on that hearing loss after it was confirmed thru hearing testing, I was sent for the MRI w/contrast and a 3.8 cm AN was diagnosed.
Erin

[opp2]

Hello Kain, and a sad welcome to the forum.

I have minimal hearing loss that has been associated to a traumatic hearing injury 12 years ago. My diagnosis came as a result of trying to find out why I was having headaches with associated visual disturbances. My face became numb and tingling just prior to my insistence that I have an MRI.

That being said, we are all as different in our symptoms, diagnosis, treatment and recovery as we are in our DNA.

All the best to you Kain. Good searching.

[leapyrtwins]

Kain -

although there are some common symptoms of an acoustic neuroma, not everyone has these "common" symptoms.

There also seems to be no connection between size of the AN and the number of symptoms that patients notice.  Location is generally a bigger issue when it comes to symptoms.

Some ANs are large and the patient experiences few symptoms; some ANs are small and the patient experiences lots of symptoms.

An MRI is the only way to accurately diagnose an Acoustic Neuroma, and generally they show up best when there is gadolinium contrast (injected into your arm).

However, as Lori said, some ANs do show up on MRIs without contrast.  The contrast just serves to "highlight" the tumor.

Jan

[Shelley G]

Hi Kain- my AN was diagnosed by accident- I had been doctoring for almost 2 years for facial numbness (like dental Novocaine wearing off), tastebuds not working and pressure headaches, as well as pain behind my ear- I did have some minor hearing loss, but didn't realize it.I was diagnosed with cancer (not due to any of those symptoms)- as part of my cancer treatment I had a CT scan and I insisted that one be done on my head as well-( I had concluded that I probably had brain cancer too) the AN showed up, which is unusual, and then they did an MRI with contrast, which confirmed it. The AN has caused me some difficulties- but was a better alternative!!  This was my second cancer diagnosis in 8 years- I dealt with the cancer first, then with the AN. Keep talking to your doctors and good luck.

[mk]

Hi Kain,

like everyone else has said, symptoms can vary vastly from one patient to another. I am among the percentage that didn't have any hearing loss or imbalance upon diagnosis - only numbness in the face. This is associated to the trigeminal nerve being impacted - the result can be from mild hypoesthesia (numbness), to the feeling of "pressure" that you describe, and sometimes a "burning" or "tightness" sensation. I have experienced all these from time to time. As for the imbalance, many times the destruction of the vestibular nerve is so slow, that the other side compensates without the patient ever knowing it. Generally small tumours located entirely in the Internal Auditory canal may cause more symptoms than larger ones, located on the CPA.

It does seem like your doctors have put you in W&W status. This is very common in many countries like Canada and in Europe, where they are very conservative in the choice of treatment. The logic being that if you are not experiencing serious symptoms, you are better off leaving the AN alone, because you will be probably worse off after treatment anyway. Based on this approach, the recommended course of action is to have MRIs at 6 months intervals, to establish if there is a growth pattern - if not then you don't do anything.

Also, your doctors are to some extent right when saying that they cannot for sure establish a link between the AN and your symptoms. For example headaches can be caused by many other factors, and generally they are not a typical symptom of an AN. Also the sensation in your face is a bit odd given the size of your AN - usually it happens with larger ANs, that reach the brainstem.

I would say that first of all, you need another MRI at a 6 month interval (sooner would probably be useless), to establish if there is any growth. On the issue of contrast, while it is indeed established that gadolinium contrast is the best way to diagnose an AN, sometimes in the most modern and sensitive machines it is not necessary, once the AN has been detected (which is your case). I know of many patients in Toronto that didn't have all their MRIs with contrast - just the ones that were intended for treatment planning. In the meantime, research, research, research, so that you know what is the best option for you once the time comes to decide. Your AN is still very small, so you have plenty of time.

Good luck
Marianna

[Kain]

Erin, Sue, Lori, Jim, Brian, Opp, Jan, Shelley and Marianna!

I am very glad for your kind responses of my initial questions. I have now a few things to discuss with my docs, and I think that one thing you have accomplished, is that you have armed me with some good questions. Another thing to mention, is that this thread (so far) has prepared me for what might be a hard time for me, but please remember that I had the pain now for a long time, and with every year it gets even more worse. It cannot continue forever!

In the meantime, I will browse the archives, and of course try to feel good.

Best wishes
Kain