Just Diagnosed and Advised to Wait

[Obita]

Brucifer:

Hi - I'm Kathy and I didn't have the option of waiting.  Mine was 2.5cm when I was diagnosed.  The AN was just touching my brainstem so I couldn't wait very long before treatment.  I decided on Translab and don't regret the decision one bit.  My recovery after surgery was pretty much a carbon copy of Dale's.  What I do often wonder is if my AN had been a little smaller maybe I could have saved what hearing I did have.  Maybe that little bit would help locating sounds.  That is my MAJOR complaint........SSD is no big deal but spinning around in circles to find who is calling me drives me nuts. 

Good luck,  Kathy

[Mark]

Bruce,

I think there have been a lot of good comments in response to your initial post, but I wanted to address Dale's "magic number" of 2 cm as I'm not sure what that is based on, but I'll assume it's one of two scenarios

In terms of having the option of radiosurgery in addition to surgery the generally accepted size limit is around 3 cm. My AN was 2 cm and that is typically considered of medium size by most docs. There are a significant number of posters in the archives here who were successfully treated by radiosurgery for AN's between 2-3 cm

If the 2 cm number refers to a threshhold where surgical results begin to diminish, that is probably a fair statement. Surgical outcomes, beyond the obvious skill of the surgeon issue, tend to be very size dependent in that the larger the AN the worse the probability of a good outcome with minimal deficits. Radiosurgical results do not vary much by size with a 2.5 cm having the same "risk / reward" potential as a 1 cm, etc.

As a rule of thumb, I think outcomes tend to be very similar in tumors less than 1 cm for both treatments, although I also believe invasive surgery always creates more risk than non invasive treatments. Between 1-3 cm , my observations of studies tends to be that radiosurgery has much better facial and hearing nerve preservation results than surgery. If you read through the archives here I think its a pretty safe bet that those who post about great results from surgery with minimal deficits typically had small AN's, so their experience is not very relevant to someone with a medium to large AN. On the other hand, the size correlation for outcomes for those having radiosurgery is less apparent.

My 2 cents

Mark

[Sheryl]

Brucifer - Yes, from what I understand, having a schwannoma on the 9th cranial nerve is uncommon (leave it to me!!).  It is so much like and so close to the 8th cranial nerve that I joined this "club" and have received tons of help and information.  Please continue to keep us all posted.
Sheryl

[antoinette]

Hi Bruce,  I have started with the full AN's list of symptoms after a car accident in 1990, but the tinnitus was intermittent, to become full time 2 years after after another fall, hitting my head, as vertigo was quite bad. off course doctors (I saw many) all attributed these symptoms to the car accident sequel until a scan showed the AN.  Size 1.8 cm x 1 cm, with perhaps a small extension towards the exit in the cerebellopontis angle.
The surgeon, like yours advised e to wait, checking first in 3 months with MRI, then revising decision at each check-up. I had convinced myself that it would shrink as this is a possibility, (I know personaly one case).  the symptoms, after the next 2 years (they increased badly then) started to fade and become so unobtrusive  that  I was happy not to have opt for treatment  The AN has found a way to decompress from the inner canal by growing in the cpa, but slowly enough to warrant check-up every 2 years now.
I would have preferred the "involution", off course.
A few personal facts are important in your choice of decision. Your age, your sex (as maternity does change the hormone level and promote growth of the tumor) (not applicable here, Bruce!}, and off course, the exact location of your AN in the IAC.
But it is possible, YES, that this tumor stop growing for years or for good, and, meanwhile, the treatments are becoming better. I saw a video of the "minimum intrusion" endoscopic surgery and, if this become the norm, that is the way i would choose. Unfortunately, i am aging besides all this. There is no cure for that.
Good luck, Bruce, you are in good hands.
antoinette

[antoinette]

Bruce and Sue.
ANs can stop growing for a long time and some seem to stop growing for good. Treated ANs can also keep on growing, and operated ANs can also regrow. Rarely, they can also shrink.
Nothing is absolutly sure about ANs and the ultimate result of what we decide and do.
If you are comfortable with your choice, keep informed, yes, but do not invest most of your life in the search of new treatments. You already know now all what is available. Get on with your life, enjoy it and forget your tumor until it gives you a warning, and go to check-up MRIs as regularely as your specialist makes it available to you.
The more you do physicaly to forget this AN, the better you will be. 2 cm is NOT a magic number, 3 cm is more likely to be. But some "huge" ANs have been discovered which were not having huge symptoms and had no bad outcomes after removal.
I will give you details if you want.
antoinette

[antoinette]

Hi Bruce,  I have started with the full AN's list of symptoms after a car accident in 1990, but the tinnitus was intermittent, to become full time 2 years after after another fall, hitting my head, as vertigo was quite bad. off course doctors (I saw many) all attributed these symptoms to the car accident sequel until a scan showed the AN.  Size 1.8 cm x 1 cm, with perhaps a small extension towards the exit in the cerebellopontis angle.
The surgeon, like yours advised e to wait, checking first in 3 months with MRI, then revising decision at each check-up. I had convinced myself that it would shrink as this is a possibility, (I know personaly one case).  the symptoms, after the next 2 years (they increased badly then) started to fade and become so unobtrusive  that  I was happy not to have opt for treatment  The AN has found a way to decompress from the inner canal by growing in the cpa, but slowly enough to warrant check-up every 2 years now.
I would have preferred the "involution", off course.
A few personal facts are important in your choice of decision. Your age, your sex (as maternity does change the hormone level and promote growth of the tumor) (not applicable here, Bruce!}, and off course, the exact location of your AN in the IAC.
But it is possible, YES, that this tumor stop growing for years or for good, and, meanwhile, the treatments are becoming better. I saw a video of the "minimum intrusion" endoscopic surgery and, if this become the norm, that is the way i would choose. Unfortunately, i am aging besides all this. There is no cure for that.
Good luck, Bruce, you are in good hands.
antoinette

[russ]

 Hello;

  Read your situation, Brucifer, and was wondering if another MRI will be performed in 6 or 12 months? It should, I believe, as well as audiogram.
  I was thinking about your peripheral neuropathy and was wondering if your diabetes is well controlled?
  Also; I note you have mild tinnitus bilaterally. Your hearing is absolutely OK in the right ear?
  Seems the tendency is for ANs to become less aggressive as one ages but not always necessarily so. I've read of rapid growth suddenly after a stable period.
  Getting back to bilateral tinnitus and peripheral neuropathy, does the Dr. offer explanation why you have tinnitus in the good ear if no hearing loss? I can understand the left ear with AN as having hearing loss produced tinnitus. Tinnitus has a variety of causes but hearing loss often accompanies.
  Re Bilateral tinnitus and peripheral neuropathy, nearly 50% of pts. who have NF-2, detected or not, have peripheral neuropathy and bilateral ear problems though another AN might not show. There is a very remote ( miniscule ) possibility of a schwannoma elsewhere in the body.
  I would watch this seemingly pretty innocent situation very closely.
  Yes; Treatment usually produces more damage than the harbored AN itself.
  Mind if I ask your age? <30 and I would really monitor the situation.
  Best wishes to you!

  Russ

Hi everyone! I was diagnosed with AN on 5/15 and have been lurking on this site for a few days, gathering information and discovering what a wonderful community you have here. After an MRI picked up my AN (1.5 cm x 1.6 cm x 1.4 cm), I was referred to a neurosurgeon and had my appointment with him on 5/23 to discuss my options. I want to thank those of you who post here because without you directly knowing it, many of you really helped me prepare for my discussion with the doctor.

First of all, the neurosurgeon was great. He accurately discussed my three options: wait and see, microsurgery, and radiosurgery (GK). He explained the pros and cons of each and then asked me my medical history. When I told him that I had had partial hearing loss in my left ear for about six years and that I had no facial numbness or paralysis and no vertigo or balance issues, he pretty quickly zeroed in on the wait-and-see option. His rationale was that I have probably had AN for at least six years and that its growing may be contained at this stage. Since I have no symptoms that seriously effect my daily activities, he felt that the risks associated with treating the AN were not worth going ahead with surgery. He suggested that I have an MRI every six months, and only move to one of the surgery options if the AN is seen to be growing or if a more serious symptom develops. However, he left the decision up to me. I felt confident in his advice and decided to wait and see.

I was wondering though if anyone has heard about AN growth slowing after several years? I cannot recall reading about this anywhere. I know that everyone's experience is different, so I'm sure I'll find out one way or another if my AN is growing or not with the next MRI.

Just to fill in on my other symptoms, I have very low-level tinnitus in both ears, but more in my left than my right. I can tune it out very easily though. My wife Lisa says I'm good at tuning out things that I don't want to hear.  When I'm stressed or anxious, my eyelids sometimes twitch and my teeth chatter. The neurosurgeon explained that these are probably caused by the AN. I also have diabetic-onset peripheral neuropathy which I treat with Cymbalta. The reason I had the MRI is because the pain from my neurpathy was flaring up and my teeth chattering was getting worse. I was concerned that I might have an auto-immune disorder. No auto-immune disorder was discovered, but my AN was, so I'm glad I got the MRI. Anyway, I guess I'm apart of the club now.

Bruce

[russ]

Hi Bruce!

  I first want to reassure you the probability of your having NF-2 is quite minimal; Maybe 1/40,000 or more depending upon the literature read.

  What caught my attention was the bilateral tinnitus even though current MRI shows neg. that side. Also; The fact you have peripheral neuropathy even though it's felt diabetes mediated. Has there been an increase in pain or numbness during the growth period of your AN which seems odd compared to your diabetes being under control? It seems prudent to me to know what is causing the tinnitus in the good ear and really, can 'all' the neuropathy be blamed on diabetes?

  I had no opposite ( contralteral ) side symptoms when they found my first AN but an ENG with calorics test revealed a slightly abnormal reading for the good side. That was an indicator of NF-2 though back then they didn't recognize it. This was 1977 and my NF-2 wasn't diagnosed until 2000. I believe the cluster of symptoms of NF-2 ( and named such ) came in 1993 after the Human Genome Map was completed. It was the first gene cloned for study purposes. Of late, the diagnostic criteria for NF-2 has been changed to where a person no longer needs to present with bilateral ANs. Though, eventually, this is usually the case.

  I have peripheral neuropathy as mediated by NF-2. There is a proliferation of schwann cells ( same as cells which make up your AN ) in my blood stream. They are filling the normal axonal nerve receptors in my feet, legs, and other extremities ( axonal peripheral neuropathy, NF-2 mediated ). This was Dx'd by a neurologist. Entrez PubMed does have an article or two about this but I would have to do some searching.

  Best wishes

  Russ   NF-2, left post translab and subsequent 100% sensory loss that ear, right AN watch and wait and sensory losses, a small meningioma, 10 spinal tumors, watch and wait, CI candidate, and checking into Gamma Knife.

[vjharris]

Russ and Bruce,
I too am questioning the possibility of NF2. I am 46, diagnosed with a single 2.2 x 1.7 right side AN last year. I am currently in the watch and wait mode. My only symptoms are mild ringing in both ears. (Much less in the non-AN ear.)
At the end of March, I started being wakened 3-4 times a week feeling like my hands and/or feet had fallen asleep. This then progressed to (off and on) sharp tingling (skin prickling) of the hands and feet throughout the day. Is this considered neuropathy? I wouldn't say it's painful, just very irritating. The other wierd thing is that after about six weeks, the tingling has slowed faded to where I'm now only aware of it occasionally. Does your pain come and go or is it constant without medication? I've had EMGs of upper and lower limbs. They then suggested MRI of the upper spine only (with contrast) and no tumors were found. They did discover some arthritis in both upper and lower spine, which they say COULD be causing the problem, but not likely. Since my daughter also has cataracts, I'm obviously very concerned. I see a geneticist in a couple of weeks, but I'm not sure they can say for sure if I have NF2, since no one else in my family has it. I also have an appointment with a neurologist at the end of the month.
Bruce, I'll keep you posted if I learn any more about the NF2 neuropathy connection when I see the DRs.
My best to you,
vjh

[Sue]

I read your post about arm and leg tingling and arthritis of the spine. My neighbor has that. We were exchanging stories of our visits to neurologists and she said that she has arthritis and that was causing her legs to go numb at night.  So I guess that is a valid reason. Maybe yours is something else, but just thought I'd mention it. My toes and feet get numb too, and I'm thinking it's probably arthritis for me also. I need to ask the doctor about that, next time, but after what happened the last time I went to the doctor for a checkup, I'm nervous about saying anything!!   

[russ]

Hello vjh!

  You wrote: "I started being wakened 3-4 times a week feeling like my hands and/or feet had fallen asleep. This then progressed to (off and on) sharp tingling (skin prickling) of the hands and feet throughout the day. Is this considered neuropathy?"

  I experience nearly identical symptoms ( falling asleep, tingling ) and the diagnosing neurologist said that was part of peripheral neuropathy.
  Re Pain; I was tried on Neurontin but found the side effects and amount of drug to be excessive. The severest pain comes and goes so I choose to just bear it. It consists of burning toes and aching calves and some days, other extremities.
  Dr did not order EMGs because I have the prexisting NF-2 and nothing else to contribute to neuropathy.
  This: "Since my daughter also has cataracts." 'May' be significant. But; There are 'juvenile cataracts' unrelated to NF-2.
  I understand your NF-2 concern. Unfortunately; Current blood tests for NF-2 are only about 60% accurate.
  Again; Might I reiterate? The liklehood of NF-2 being in you or family is very, very small.
  Best wishes always!

  Russ

Russ and Bruce,
I too am questioning the possibility of NF2. I am 46, diagnosed with a single 2.2 x 1.7 right side AN last year. I am currently in the watch and wait mode. My only symptoms are mild ringing in both ears. (Much less in the non-AN ear.)
At the end of March, I started being wakened 3-4 times a week feeling like my hands and/or feet had fallen asleep. This then progressed to (off and on) sharp tingling (skin prickling) of the hands and feet throughout the day. Is this considered neuropathy? I wouldn't say it's painful, just very irritating. The other wierd thing is that after about six weeks, the tingling has slowed faded to where I'm now only aware of it occasionally. Does your pain come and go or is it constant without medication? I've had EMGs of upper and lower limbs. They then suggested MRI of the upper spine only (with contrast) and no tumors were found. They did discover some arthritis in both upper and lower spine, which they say COULD be causing the problem, but not likely. Since my daughter also has cataracts, I'm obviously very concerned. I see a geneticist in a couple of weeks, but I'm not sure they can say for sure if I have NF2, since no one else in my family has it. I also have an appointment with a neurologist at the end of the month.
Bruce, I'll keep you posted if I learn any more about the NF2 neuropathy connection when I see the DRs.
My best to you,
vjh

[vjharris]

Thanks Russ and Sue,
I guess I'm probably the only patient my spine Dr. will have who HOPES their arthritis is severe enough to cause problems. 
My brain neurosurgeon (Cleveland Clinic) does have experience with NF2, and he's the one who recommended a genecist, so I'm sure he is somewhat concerned. He did say that if I have it, it would be a mild form, since I don't have any other tumors or problems yet. I realize the chance is small, but my real concern is for my daughter.
I'll keep my fingers crossed and appreciate every day without symptoms.
Thanks for the support!
vjh