Another Newbie

[Echo]

Hello from Southern Ontario! I was diagnosed June 2012 with a 1.8cm acoustic neuroma (right side, mostly within the CPA, lightly touching but not indenting the brain stem). I have spent many hours learning about these tumors and the experiences of those who live with them through this amazing website and forum. I thank everyone of you who have without knowing it, helped me along this journey.

I am a 58 year old female and had my initial MRI without die May 2012. My followup MRI with die was Dec. 2012 and showed a possible 1mm change. I've been told my next MRI scheduled for this Nov. with die, will give a better idea of any growth. Initial symptoms included some loss of hearing in the AN ear, most notable when on the phone, tinnitus and weird headaches at the base of my skull and upper neck that would wake me when sleeping or bother me when first waking. By Sept. I noticed balance problems that increased over the fall and into winter. Darkness intensified the balance problems and made for a wobbly winter, especially when walking my two retrievers at night. I now struggle to take the long walks we used to take without becoming uncomfortable. I tend to walk a bit slower and end up quite tired and wonky headed afterwards. I've had the Vestibular testing and a Sclereal Coil test. The otolaryngologist reported I've lost 30% of my balance on my AN side and here's the interesting part - the balance on my good side is "abnormal" and considered "mildly dysfunctional". No explanation could be given for this abnormality. I was told I may have always been this way, and there is no way of knowing if it will stay as is or if it will get worse. It will however compromise my recovery after treatment and vestibular rehab will absolutely be required.

Weather changes contribute to my wonkiness and on particularly bad days I notice my right eye seems to look and feel more tired (more narrow) than my left eye. Another strange thing I've noticed is that when typing (which I do a lot) I seem to frequently transpose letters! I hope this is simply the result of a tired brain.

During the past year I have met with two Otolaryngologists, two Neurosurgeons (one who also specializes in Gamma Knife) and I have met the Associate Director of the Gamma Knife Center in Toronto. According to all of these specialists I am an excellent candidate for either Gamma Knife or Retrosigmoid surgery as my hearing is considered salvageable. Surgery offers the comfort of knowing the tumor has been removed, but the number and type of complications you risk developing frighten me. Gamma Knife offers a non invasive option which is very appealing but I worry about the problems than can develop up to two years post treatment or beyond and I have a fear of the small but real risk of a malignant growth occurring. Given my symptoms I'm not entirely sure wait and watch is a realistic option. I have a history of migraine and tension headaches.  I have read that Retrosigmoid can cause more post op headache issues than Translabyrinthine. Do I want to attempt to preserve some hearing at the risk of increased headaches? Is there really that big a difference between the two types of surgery regarding headaches? Are there any members within this forum who have gone through treatment knowing the balance on their good side is not 100% and how have they made out? I am truly stuck with how I feel about treatment options.  Any words of wisdom will be greatly appreciated and I thank you all.

Cathie

[kmr1969]

Cathie,

Sorry to hear about your diagnosis, but welcome to our very exclusive club.

It sounds like you are doing a great job at researching the options.

My tumor was larger and I am a few years younger than you.  While I really wanted GK to be my decision the more I talked to doctors the more I knew that surgery was the best option for me.  It was a very difficult decision because the surgery really scared me, but it was the right choice for me.

Knowing that surgery rids you of most of the tumor is comforting, but no one gets 100% certainty that the tumor will not regrow.  I believe it is getting more and more common for doctors to purposefully leave microscopic scraps of the tumor behind if doing so increases your chances of having a good outcome with your facial nerves.

Keep doing your research.  If you have not already done so, it may help if you get the ANA's 'Willing To Talk' and call some people.  I spoke to 4-5 people and I felt better after each conversation.

Best wishes for a very successful treatment and an uneventful recovery,

Ken

[CHD63]

Hi Cathie and welcome to this forum of new caring and supportive friends, who have been through what you are going through now.

My AN was only slightly larger than yours upon diagnosis, but for many reasons, I was not a good candidate for radiation treatment.  My first surgery was via retrosigmoid approach because my hearing was considered salvageable.  I chose my neurosurgeon very carefully for that surgery.  Immediately post-op I was waaaaaay off balance and had double vision for a couple of weeks, but no headaches.  I retained 20% of good, serviceable hearing, boosted with a normal hearing aid.

Fast forward to three years later, when it was determined my tumor had regrown to nearly the size of yours.  This time I decided to go to House Ear Clinic in Los Angeles, who, in my view, has the most experience treating acoustic neuromas, where it was removed a second time via translabyrinthine approach.  Post-op I had no new balance issues, no double vision and no headaches, but I was automatically totally deaf in my AN side ear.  I knew I would be deaf before surgery so my bone-anchored hearing aid abutment was implanted at the same time.  I love my Oticon Medical Ponto Pro hearing device!

Backing up again ..... my doctors at House feel very strongly that the radiation treatments to my head I had as a young girl had knocked out my vestibular nerve on my non-AN ear side, but I never connected that it was non-functioning (because my remaining vestibular nerve had taken over) until my AN formed on the only functioning nerve.  That's why I was so impaired following my first AN surgery.  I spent months in outpatient vestibular rehab and learned how to compensate for the missing vestibular nerve function.  I am currently taking yoga classes each week, which helps tremendously to continue making the adjustments I will always have to make.

Please keep in mind, it is still considered rare for a surgically removed tumor to regrow.  No doctor can guarantee hearing preservation with any surgery.  There are too many variables that cannot be seen until a surgeon gets into the area.  As for surgical complications, they too, are very rare, if you have an extremely competent neurosurgeon.

My advice to you is to search for the physician(s) with the most successful experience treating specifically acoustic neuromas, not just brain tumors in general.

At some point in your research, you will know what is best for you.  After making your decision you will feel much better.

Thoughts and prayers.  Clarice 

[arizonajack]

Hi Cathie.

All I can do is give you the benefit of my experience.

I had been having hearing issues for a couple of years and procrastinated. Along comes December 2011 and I discover that 90% of my hearing is gone in my right ear. I could only hear tinny, far away voices on the phone using that ear.

April 2012 MRI revealed AN about 3mm x 4mm x 9mm. I chose watch and wait and had a second MRI in October 2012. By then my hearing on that side was 100% gone and the AN had grown to 4mm x 4mm x 12mm.

I chose GK. Had it on January 22 and will have my next MRI next October.

My experience suggests that your AN should be approached with some urgency since you are already experiencing some loss of hearing.

Even if your AN doesn't grow it's still having a happy time damaging the nerve that it's wrapped around.

The longer you wait the better the possibility is that your hearing will get progressively worse until you no longer have to be concerned with saving it.

With regard to balance, you will likely have balance issues after treatment regardless but the consensus seems to be that balance improves with time.

[Echo]

Thank you all for the warm welcome to this exclusive club! 

It's encouraging to hear from people who have been through the treatment both Gamma or Surgery with good results. My hearing loss is a concern so I am trying to not let this indecision drag on to much longer.  Unfortunately the hearing in my non AN ear is not 100% so I hesitate to move forward with a hearing device for that ear until I make my decision regarding the AN.

Thanks for the yoga tip Clarice, something I should definitely look into, as long as I don't have to tip my head upside down very often (I'm laughing at the very thought).  Right now even going down stairs is unnerving if I have to look down, I always grab the railing!

Cheers!
Cathie

[james e]

Like Az Jack, I lost 85% of my hearing in my right ear. My left ear worked just like a 60 year old ear works, not the best, but a whole lot better than my right ear. I had a translab to best preserve my facial nerve. My left ear is now failing as I reach 64, and I have some interest in a Cochlear implant, and have attended a Cochlear event. I do have a BAHA, but it only works if you have a good ear. Believe me, my good ear is pretty bad, but my BAHA BP100 really helps, and I can move up to a stronger BP110.

Translab does not cut any muscle tissue. I have never had any headache due to my surgery.

My wife is a drug rep and sells migraine medicine. There are some pretty  medicines out there for migraines, but you must see a doctor to get the Rx.

James

[Echo]

Hi James,

The hearing loss in my good ear is primarily high frequency sounds and I was told it's mostly due to age (58).  I really want to focus on the my AN treatment choice first before dealing with the hearing aids.  There's only so much new info and research I can handle right now before things become overwhelming.  I do appreciate the tips though and I keep them all filed away for reference so keep them coming!  The migraine and tension headaches that I used to deal with had gotten so much better (less frequent) as I have gotten older that it's been a huge relief.  That's why I'm a really concerned over treatment options and outcomes. I know there will be issues to deal with but keeping the headaches to a minimum sure is one of my goals!

Cathie

[robinb]

Hi Cathie-

Welcome to the AN Club, where nobody wants to be a member but everyone here is grateful we have this group.

I agree w/Arizona and I had GK shortly after he did; You and I are the same age so read our posts and PM me if you want to talk.

[arizonajack]

Welcome to the AN Club, where nobody wants to be a member but everyone here is grateful we have this group.

Groucho Marx: "I wouldn't join a club that would have me as a member."

 

[Echo]

Well Jack, I haven't been around this club to long, but I've already enjoyed some of your humor!  I found the "My Shwannoma" song you posted within the AN Community, and have already downloaded it.  Makes me smile everytime I hear it!

Cathie.

[Ruber22]

Hi Cathie,

I was diagnosed a year ago when my AN was 1.8 cm I wish I could have done the surgery back then as the smaller the size of the tumor the less complications you might have after the surgery. Now my AN is 3cm and I have a surgery in 1,5 weeks. God help us all fight this disease.

[Echo]

Hi Ruber22,

Well you and I are excellent examples of how these tumors can grow!  I was hoping at my age (58) that the tumor would in fact be one that either does not grow or grows very slowly.  Every Dr. I spoke with told me at 1.8cm I had plenty of time and not to rush.  They also told me to realize that if things changed and the tumor did grow, so would my complication risk.  I opted to focus on my research and keep a close eye on my symptoms. It's a tricky route to go because things can change and you don't necessarily get symptoms to indicate a change.  In my case my symptoms did change and I requested a follow up MRI this past June instead of waiting till November.  The new MRI showed my AN to be 2.4cm so I knew it was time to get moving. 

I knew there was a risk in waiting for my next MRI, but I have no regrets in how things have fallen into place.  I needed the time it took to reach my decision regarding treatment.  Others are able to decide much sooner and some wait longer.  I have slightly less than 4 weeks until my Gamma Knife treatment.
You have 1.5 weeks till surgery.  Different choices made, but ultimately we are both going through the same process - making truly tough decisions and then moving forward with treatment and recovery. I wish you all the best for a successful surgery.  Post when you can and give us all your update.  There are many here to help you get through this difficult time.

Cathie.

[Ruber22]

Hi Cathie,
Thank you very much for your wishes, at this hard moment support is the greatest remedy for us, especially from the ones who have this disease as we all are in the same boat.
You are so right there are people that right away make a decision and go ahead for a treatment, for me it took a year to realize i have a tumor in my head which is like a time bomb that needs to be out. Right now I dont have too many bothering symptoms, just ringing in my right ear on and off, when I walk sometimes I walk like a drunk person, and occasionally I have numbness on my lips and the edges of my tongue. I just turned 30, and none of the doctors I saw recommended Gamma Knife for me, and also these tumors are tricky, after radiosurgery they continue growing which is what scared me the most, what if it grows and then surgery will be my only option, and that means i will have a scar tissue which will make things worse.
 Anyway I am m not trying to scare you off of your decision, just shared with my thoughts that i was deliberating on before making a decision for surgery. I wish you best of luck, may God lead you to a successful  treatment, i will keep in touch.
My regards to all of you in this long journey!
Elina