acoustic neuroma

katmumof3
katmumof3 Member Posts: 1
edited June 2023 in Brain Cancer #1
i was recently diagnosed with an acoustic neuroma, I have no hearing loss or tinittus, no facial paralysis, only slight vertigo. my tumor is 1.8 cm long, so not large yet, but it's touching the brain stem already. What are the risks connected with the tumor touching the brain stem? Does anyone know what the chances are of it being malignant? i've been told they're usually benign, but statistics wise i have no idea how to interpret that, lol. Does anyone know if they're a rare tumor? If anyone has some information i would be very appreciative, I feel somewhat in the dark about it.

Comments

  • Waving
    Waving Member Posts: 43
    #2
    Yes - "usually benign" - I'm not sure it has an exact statistical interpretation - let's hope it means "most are benign"! I can't help you with any ansers to your questions, but if you also go to this webpage www.cancergen.com/brain you can find links to other sources of info and support.
  • betty.masure
    betty.masure Member Posts: 1
    #3
    I had an acoustic neuroma removed in 1994. I am alive and well, and can answer your questions. I have been involved with the Acoustic Neuroma Society since mine was removed, and have never heard of this type of tumor being anything other than benign. There are several surgical procedures, some with more lasting effects than others. Be careful who removes it, and which procedure they use! Do your homework!
    As for the risks with the tumor itself, if you don't have it removed, it will eventually kill you. Usually, people just quit breathing.
    There are options, it depends on where you live.
    email me for more info.
    Betty
  • Christine123
    Christine123 Member Posts: 1
    #4
    betty.masure said:

    I had an acoustic neuroma removed in 1994. I am alive and well, and can answer your questions. I have been involved with the Acoustic Neuroma Society since mine was removed, and have never heard of this type of tumor being anything other than benign. There are several surgical procedures, some with more lasting effects than others. Be careful who removes it, and which procedure they use! Do your homework!
    As for the risks with the tumor itself, if you don't have it removed, it will eventually kill you. Usually, people just quit breathing.
    There are options, it depends on where you live.
    email me for more info.
    Betty

    Hi, I'm a new member here and my doc thinks that I have acoustic neuroma. I go for my MRI Tues. and I'm terrified. I've been reading online for days and I have ALL of the symptoms including facial tingling, pulsing, mild confusion at times...etc.
    Do you think it's possible to have all of the symptoms and not actually have a turmor?
    Any help is GREATLY appreciated.
  • laurarose
    laurarose Member Posts: 4
    #5
    Christine123 said:

    Hi, I'm a new member here and my doc thinks that I have acoustic neuroma. I go for my MRI Tues. and I'm terrified. I've been reading online for days and I have ALL of the symptoms including facial tingling, pulsing, mild confusion at times...etc.
    Do you think it's possible to have all of the symptoms and not actually have a turmor?
    Any help is GREATLY appreciated.

    My dad had this 8 yrs ago
    My dad had this 8 yrs ago and other than hearing loss on that side. He's fine. He reaserched and found that the best doctors on the east coast were right here at his local hosptial. Dr. Seminoff did his surgery at Albany medical center. yeaterday Dr. Seminoff removed a medulloblastoma from my 17 sister. We are numb but hopeful.
  • gregAN2000
    gregAN2000 Member Posts: 1
    #6
    Acoustic Neuroma
    hey there, I had a 2.8 cm removed in 2000, and have no permanant facial paralysis; just loss of hearing and balance on the left.

    These tumors actually form from a Mylan Sheath cell on the Vestibular nerve, which runs cojoined with the Auditory or Acoustic Nerve. Proper name is probably Vestibular Schawnoma or something similar.

    1.8 CM is moderate size, and yes, they do grow, but slowly. I had a 14 hour surgery and every complication associated with the surgery. I would get in very good shape prior to surgery so you are strong for recovery. I had major neck surgery 3 months prior and that was probably too soon.

    It is very important that you decide on the right type of doctor or team, and the right doctor or team. The basic debate seems to be the neurosurgeon approach vs the otolaryngologist approach. do they access the tumor from over the ear or from behind the ear (called trans lab approach). I have seen a number of people who chose or were talked into the Neurosurgeon approach that have permanant facial paralysis. cannot blink their eye and mouth drooping. with trans lab, you will lose hearing, but that is on the way out anyway.

    I would say that if you get an Otolaryngologist to recommend the neuro approach, you may consider it. problem is access to the facial nerve to remove tumor without damage to the facial nerve.

    vast majority of these tumors are not malignant, but they all are in a bad location; without much room to expand without soft tissue compression. Yes, they do push against the medulla oblongota when they grow, and this can be tolerated in older people who will die of other stuff before the medulla is compressed to a level to cause serious harm. Mine was pushed to the right, but did not seem to cause problems.

    I did have facial tingle and lots of hearing loss prior to surgery, but my balance was fine. very strange how and what neuro matter is damaged. lots of straw breaking camel backs with these things.

    At a 1.8, I think removal is probably advised, especially if most of your hearing is already gone. Mine was 9 years ago with recent MRI showing no re-occurence. If the neuro approach, which is intended to save hearing has progressed, that may be a consideration. if not, I would tend to sacrifice the hearing and one side balance to keep facial function.

    careful about internet research, very scary reading, and not always in perspective. get the right surgical team and you get a good result. Be willing to travel for that. I would not just go with any neurosurgeon unless he has lots of experience with THESE tumors.

    We have a great Oto Dr. in Norfolk Va, Barry Strasnick (google him); and he is the type of guy you want; along with a neuro.

    I guess that is all for now. These are not good news but they are not cancer ;>)
  • rsr8727
    rsr8727 Member Posts: 1
    #7
    betty.masure said:

    I had an acoustic neuroma removed in 1994. I am alive and well, and can answer your questions. I have been involved with the Acoustic Neuroma Society since mine was removed, and have never heard of this type of tumor being anything other than benign. There are several surgical procedures, some with more lasting effects than others. Be careful who removes it, and which procedure they use! Do your homework!
    As for the risks with the tumor itself, if you don't have it removed, it will eventually kill you. Usually, people just quit breathing.
    There are options, it depends on where you live.
    email me for more info.
    Betty

    acoustic neuroma recovery
    I had my tumor removed on 5/28/10. Mine was around 3.5 centimeters . I guess I am very frustrated with the recovery. I am only 38 and it really knocked me down I get better day by day its just I have constant ringing in my right ear (some days worse than others) even though I lost all the hearing. Does the ringing go away eventually? I also have good and bad days with the balance and the "dizziness". I know they keep saying it could take up to 6 months but I am scared of being off work to long and not having a job when I heal. I know I am inpatient I had no medical problems prior to this and the tumor was found accidently (I had a concussion), I am glad they found it and it was removed because of the size and I do have children. The doctors are pleased with my recovery considering the size of the tumor. I know how far I have come in a month and I need to be patient its just frustrating.
  • Rainbow12
    Rainbow12 Member Posts: 2
    #8
    rsr8727 said:

    acoustic neuroma recovery
    I had my tumor removed on 5/28/10. Mine was around 3.5 centimeters . I guess I am very frustrated with the recovery. I am only 38 and it really knocked me down I get better day by day its just I have constant ringing in my right ear (some days worse than others) even though I lost all the hearing. Does the ringing go away eventually? I also have good and bad days with the balance and the "dizziness". I know they keep saying it could take up to 6 months but I am scared of being off work to long and not having a job when I heal. I know I am inpatient I had no medical problems prior to this and the tumor was found accidently (I had a concussion), I am glad they found it and it was removed because of the size and I do have children. The doctors are pleased with my recovery considering the size of the tumor. I know how far I have come in a month and I need to be patient its just frustrating.

    Hi , i am 32yrs old female
    Hi , i am 32yrs old female living in Australia.
    I was just recently diagnosed with Large AN = 3.4cm
    AN didnt really affect my life and so to found that it was large was quite shocking.. my specialist think because i am a fit person.. ( I think it was more God's grace that I was spared to know this illness before it's too late)..
    I have met with the best Neuro-Otology in Australia.. and he said he will try to save my facial nerve during operation... but he wont be able to save my hearing.. :(
    I am due to meet a Neurosurgeon for second opinion this coming tuesday and meeting back my Neuro-Otology on Wednesday to let him know about my surgery decision..
    I am very interested to know how you are surviving know, Rsr8727? As we have almost the same size of tumour.....Have you permanently lost your hearing ?
  • Rainbow12
    Rainbow12 Member Posts: 2
    #9
    rsr8727 said:

    acoustic neuroma recovery
    I had my tumor removed on 5/28/10. Mine was around 3.5 centimeters . I guess I am very frustrated with the recovery. I am only 38 and it really knocked me down I get better day by day its just I have constant ringing in my right ear (some days worse than others) even though I lost all the hearing. Does the ringing go away eventually? I also have good and bad days with the balance and the "dizziness". I know they keep saying it could take up to 6 months but I am scared of being off work to long and not having a job when I heal. I know I am inpatient I had no medical problems prior to this and the tumor was found accidently (I had a concussion), I am glad they found it and it was removed because of the size and I do have children. The doctors are pleased with my recovery considering the size of the tumor. I know how far I have come in a month and I need to be patient its just frustrating.

    Hi , i am 32yrs old female living in Australia.
    I was just recently diagnosed with Large AN = 3.4cm
    AN didnt really affect my life and so to found that it was large was quite shocking.. my specialist think because i am a fit person.. ( I think it was more God's grace that I was spared to know this illness before it's too late)..
    I have met with the best Neuro-Otology in Australia.. and he said he will try to save my facial nerve during operation... but he wont be able to save my hearing.. :(
    I am due to meet a Neurosurgeon for second opinion this coming tuesday and meeting back my Neuro-Otology on Wednesday to let him know about my surgery decision..
    I am very interested to know how you are surviving know, Rsr8727? As we have almost the same size of tumour.....Have you permanently lost your hearing ?
  • stevie111
    stevie111 Member Posts: 1
    #10
    Rainbow12 said:

    Hi , i am 32yrs old female living in Australia.
    I was just recently diagnosed with Large AN = 3.4cm
    AN didnt really affect my life and so to found that it was large was quite shocking.. my specialist think because i am a fit person.. ( I think it was more God's grace that I was spared to know this illness before it's too late)..
    I have met with the best Neuro-Otology in Australia.. and he said he will try to save my facial nerve during operation... but he wont be able to save my hearing.. :(
    I am due to meet a Neurosurgeon for second opinion this coming tuesday and meeting back my Neuro-Otology on Wednesday to let him know about my surgery decision..
    I am very interested to know how you are surviving know, Rsr8727? As we have almost the same size of tumour.....Have you permanently lost your hearing ?

    i just wanted to let you
    i just wanted to let you know my partner only 21 was diagnosed with one on these over 4cm big one of the largest they ever removed in australia.. They said when he was diagnosed and we got to sydney was was lucky to be alive with a ;ife expectancy of 6 months tops. They removed it with minimal damage. He has had a long recovery though was in sydney for 4 weeks at st vincents and now he is back in hospital with an infection and will eventually be needing to go back to sydney as he has brain fluid leaking.
    Its not as bad as it sounds! your very lucky your is small ! they are unlikely to have cancer! they are generally a quick operation though my partners was so large and taking uo most of his brain stem his was a 12 hr operation!
    Dont worry! I am sure by now you have already been treated but if you would like support or someone to talk to please contact me!
    What dr are you seeing? I do highly recomend Dr Winder.
  • 3rdrodeo
    3rdrodeo Member Posts: 1 *
    #11

    I have a recent diagnosis of a vestibular schwannoma/acoustic neuroma R. ear with ringing in the ear and some hearing loss. Neurosurgical consult and one with a radiology consult are pending. Two years ago, I had a 1 cm. rare type of breast cancer that was small enough to quality for cryotherapy rather than the classic surgery for such a cancer. Sentinel nodes were negative for any metastasis. No chemo or radiation following it either, due to age. No further cancer there so far.

    Under anesthesia, this technique simply freezes the rogue tumor. They wait 'til it thaws to a certain temperature then they freeze it again, and also some of the tissue surrounding it to capture any CA tenacles that may be metastasizing. It was simple as an outpatient procedure, and my recovery was little more than letting the tiny 2 suture site heal over the sentinel node site, and enter a follow-up program, still in progress.

    The idea of have neuro-surgery is mind-blowing, with the Cyber-Knife or Gamma Knife looking more attractive, but because of the success with cryotherapy for my breast cancer...

    I am going to pursue the possibility of going to the Mayo Clinic in Phoenix, Arizona or Rochester, MN for cryosurgery/therapy on my vestibular schwannoma. Apparently, it is an accepted method for certain size tumors, and Medicare will pay for it too.

    Has anyone had experience with the Mayo Clinic and this approach to destroying such a tiny 3mm size vestibular schwannoma? If so, please offer some input about it, and who is the best doctor?

    Thanks,

    3rd Rodeo🙃

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