Interacochlear schwannoma discussion

[Walter-AN]

I was diagnosed on January 7th with a 2mm intracochlear schwannoma and was put on W+W.  Currently I have about 20% word recognition and tinnitus in my right ear and sometimes a little (not often) ache in the AN ear. Every now and then I feel a little dizzy or maybe dizzy isn't the right word, I just get the feeling that things just are not quite right, you know that "just got off the boat feeling" in my head.  Also getting some real light headaches (might be stress induced).
Anyone with a interacochlear schwannoma have any of these symptoms?  It's hard for me to believe that this little 2mm pain in the butt can cause all of this!


 

[TJ]

Since the cochlea is the hearing organ, anything messing with it can cause real problems.  My AN is not inside the cochlea but  was touching it.  It grew to 1.2 cm before I had it treated.  Like you my word recognition was very low before treatment.  I was not given some information from my doctor and I had CK.  The cochlea does not handle radiation very well,  so now I am basically deaf in that ear.

My advice is get all the information you can before and if you have treatment.

Best of Luck
TJ

[arizonajack]

Believe it.

Mine was 3mm x 4mm x 9mm when it took out 90% of my hearing in my right ear. Four months later 100% of my hearing was gone. 6 months of Watch and Wait and the tumor had grown 20%.

I had the same balance issues, lurching from side to side like I was on a boat. I couldn't walk a straight line from my front door to my mailbox.

I had mild tinnitus and dry eyes at night. Both started at about the same time as the balance problem.

After researching my options I selected Gamma Knife as my treatment of choice. It's been two years since GK and I'm satisfied with my recovery. Balance is back to at least 95%, tinnitus is minimal, almost imperceptible. I still have the dry eyes and take drops at night and I'm still deaf in the right ear (no hope for that, I guess). 

GK might or might not be right for you. You have to do your research and make your own decision based on all your factors. With a small tumor like yours, GK is very accurate. Another alternative is Cyber Knife, smaller repeated doses of radiation.

This may seem pessimistic but with an 80% loss of hearing it's unlikely that any hearing in that ear will remain no matter what treatment you get.

Welcome to the club that nobody wants to be a member of. You'll get lots of support and good information here.

[Walter-AN]

Thanks for the replys!  I did discuss the options with my doc at Mayo in Rochester MN and he did tell me that any form of radiation in that area would take out any hearing I have left..(which isn't much!)  I have had progressive hearing loss for the last 5 years in my right ear, an MRI 4 years ago that showed nothing.  Had another MRI in October of 2014 and located the AN.  My doc felt that W+W was the way to go for the size of my AN.   I have notice that most newly diagnosed folks have a follow up MRI in 6 months and if all is well then a year.  My doc set me up for a 2 year follow up MRI.  Has anyone had to wait that long
on a new diagnosis? Not sure if it is wise to wait that long.

[keithmac]

Thanks for the replys!  I did discuss the options with my doc at Mayo in Rochester MN and he did tell me that any form of radiation in that area would take out any hearing I have left..(which isn't much!)  I have had progressive hearing loss for the last 5 years in my right ear, an MRI 4 years ago that showed nothing.  Had another MRI in October of 2014 and located the AN.  My doc felt that W+W was the way to go for the size of my AN.   I have notice that most newly diagnosed folks have a follow up MRI in 6 months and if all is well then a year.  My doc set me up for a 2 year follow up MRI.  Has anyone had to wait that long
on a new diagnosis? Not sure if it is wise to wait that long.

I'm a UK patient and after my first anniversary MRI (12 months from diagnosis) the professor in charge of my care suggested another MRI after a further two years.  I disagreed based on what I've read here and elsewhere.  Logic, and caution, persuades me that two years is too long to leave things until several shorter-interval MRIs have revealed a pattern of no growth. 

Perhaps then a two year anniversary might be seen as appropriate but in my view it's not appropriate any earlier.  It's my head that's at risk and my views about this count more to me than even the experts' views.

[arizonajack]

 I have notice that most newly diagnosed folks have a follow up MRI in 6 months and if all is well then a year.  My doc set me up for a 2 year follow up MRI.  Has anyone had to wait that long on a new diagnosis? Not sure if it is wise to wait that long.

My opinion: It isn't.

There are three growth rates with ANs: No growth, slow growth, fast growth.

You're at the stage where you have no idea of your AN's growth rate and two years is way too long to wait to find out.

I suggest 6 months for your next MRI, depending on your symptoms. Then 6 to 9 months after that, then follow with a couple of annuals then stretch the intervals to two years.

You really have to keep a close watch on these buggers. They are referred to as benign in a sense that they are not cancerous but, in reality, they are anything but benign in the damage they do. You have only to read some of the crap that our members go through to understand that.

[Walter-AN]

Thanks for the advice.  I will follow up with another MRI in April (my 6 month MRI anniversary) and see if I have any progression and go from there.  This place has given me so much infomation!  It's great! Thanks to all!   

[keithmac]

Even though the UK and the USA have different approaches, members experiences are invaluable whatever side of the pond - or land border - we may live.     

I often recommend joining ANA to fellow Brit sufferers looking for detailed, personal experiences such as those found here.

[Walter-AN]

Following advice from several of you I sent my MRI and audiology test to House Ear Clinic for a free (that's right...free!) phone consultation on my Interacochlear schwannoma.  As I checked this site these little guys are kind of rare so I thought what the heck, I should get all the info I can. Shortly after I sent my info. I received a call from Dr. Slattery's nurse setting up a call for the next evening.
The Doc was great! Answered all of my questions and then some, sent me a follow up letter along with some balance drills. 
Interacochlear schwannomas will likely grow into and fill the cochlea. Mine is in the basal turn and he felt it would grow into the cochlea.  Out of the last 300 Interacochlear schwannomas he has seen 10 have grown out of the cochlea and required surgery.  He said these are very slow growing and suggested another MRI in a year.  He also suggested using lipoflavonoid vasodilators and the balance drills together to help with the dizziness.  He said he would be happy to discuss my next MRI with me. 
This really makes me  feel better talking one of the top guys in the field. I suggest that  if you are having doubts or even if you are not send your info. what do you have to lose? It will help you sleep better at night!

[arizonajack]

A year between MRIs is probably OK if your symptoms don't escalate.

But if they do start escalating, I suggest getting one sooner.

[AiraPaira]

I have a tiny intralabyrinthine neuroma for  two years now. First it was just a vertigo. A very strong one. But it got better in a time. But then  tullio, hyperacusis and  secondary endolymphatic hydrops started five months ago. Together with the facial and ear pain.  And hydrops are the worst.
So I I just tried Intratympanic (dexomethazone) injections from time to time.

I was required MRI scans every year, but now every 6 months as symptoms got worse.
 
So just keep an eye on your symptoms and enjoy every "normal" day that you have, because I would if someone would told  how bad it may or may not (not for everyone) be.   

[MHJ]

I also have an  intracochlear schwannoma diagnosed 12/10.  Almost the same size and position as yours, except on the left side.  For a small one it does cause problems, tinnitus, hearing loss and balance issues.  I see Dr. McKenna at Mass Eye and Ear.  Saw him last month after a 2 year watch and wait, no growth, worse hearing, next mri in three years.  He is optimistic that it will be slow growing or not at all.  Of course if symptoms get worse go back and see him.  Hope this helps, welcome to the very rare case side.  MHJ

[MHJ]

Had been going every two years, but they figure there has been no growth and with its location I would be safe to go three years. Of course I can go back sooner if any of the symptoms worsen.  I need to schedule a baha trial to see if that might help with the hearing loss.