Author Topic: Recently Diagnosed - 38 year-old, 1.3 cm AN  (Read 1864 times)

Walkos

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Recently Diagnosed - 38 year-old, 1.3 cm AN
« on: February 19, 2018, 01:53:40 pm »
Hello everyone, I am 38 years old and recently diagnosed with a left-side AN measuring 1.3 cm.  I experienced sudden hearing loss after a bout with a cold / ear congestion.  Fortunately, the Predisone worked well and I regained 90% of my hearing (I have 100% word recognition).  My current symptoms are mild tinnitus and mild hearing loss.  All very tolerable.

After a few consultations, radiation and surgery are both options.  One neurosurgeon was very clear that he would advise radiation given that I have mild symptoms and believed it was the best chance to maintain my hearing and quality of life.  The other said both are options but leaned more towards surgery because I was 'young'.

I recently spoke to a family friend who is a neurosurgeon (practiced for ~25 years).  He admitted that he only saw ANs about 1-2 per year, but did say that he recommended radiation.  He believes the outcomes are very good (particularly regarding tumor control) and has a general perspective that it is often better to avoid surgery when possible.

I've read a significant amount of the literature for both radiation and surgery.  I understand the long-term chance for hearing loss with radiation.  I've gotten two quotes regarding hearing preservation with surgery (one surgeon said 50% chance of hearing preservation, other said 70% chance).  I might be naive, but I am not particularly concerned with the long-term impact of radiation.  This technology has been used since 1969 and the level of Gy used in this situation seems much less than other conditions.  My biggest concern is the long-term chance of hearing deterioration. 

The neurosurgeon I saw recommended that I shouldn't wait too much (he has treated over 600 AN patients, so seemed to have sufficient experience).  He gave it a 100% chance that I will loss my hearing if I do nothing.  His advise was to move forward with radiation (Gamma Knife) sooner than later.  I have to say, this surgeon was wonderful and he spent 1 hour with my wife and I talking through his logic, the data, and walking us through the details of the MRI.  He was really wonderful.

I wanted to reach out to this group to get any thoughts before I take the next step.  I am getting ready to schedule the appoint for the radiation (which will be fractionated radiation over 5 days), but I wanted to reach out because I am nervous.  While I understand these are benign (and frankly, I am sure most that sit in a neurosurgeon's waiting room would like to trade places with me), I am scared.  I have two young kids and a great wife - I want to get back to enjoying my time with them...

Any thoughts / advice? 
« Last Edit: February 19, 2018, 06:41:12 pm by Walkos »

rupert

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #1 on: February 19, 2018, 06:22:15 pm »
It's just my opinion but, I think you are making a very wise choice.  You've done research and feel comfortable with your decision.  As far as hearing goes, it may or may not be gone at least in the short term.  I think waiting, surgery or radiation,  long term chances are you might lose hearing. I know a lot of people stress a lot over it as did I but,  that's why we have two ears!  The chance of any major complications with radiation are very small compared to surgery.  I know some doctors say that surgery is best because you're young but,  what happens if you are in that percentage with permanent problems.  Facial paralysis, eye problems, headaches, balance?  That's just longer you have to live with them.  You are very lucky that you have all options available to you,  some don't have a choice. You also have a very high probability of successful treatment.
   I had very few symptoms with a 2.6CM AN.  My hearing was mostly gone at diagnosis as it had probably been growing over 10 years.  I'm sure you will do fine and good luck to you.

Walkos

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #2 on: February 19, 2018, 08:30:59 pm »
Thanks for taking the time to respond. It made me feel better.

notaclone13

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #3 on: February 19, 2018, 11:04:43 pm »
Walkos, it sounds like you will be having Cyberknife treatment. Gamma Knife is a one time treatment and you mention that you will have 5 treatments.  Would you mind mentioning which state you live in and what medical facility you will be using?  If your neurosurgeon has treated 600 ANs he is extremely experienced in this area and I would trust his judgement. I am in the watch and wait mode at present, but if I have to get treatment, cyberknife will be my choice. I think you are making the correct decision for you.

Walkos

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #4 on: February 20, 2018, 06:06:32 am »
The doctor said he will use Gamma Knife Icon, which is the latest version of that technology (I believe it launched in 2016/2017).  He has Cyber Knife at his facility but recommended Gamma Knife Icon. I’ll direct message you with more specifics regarding surgeon and facility.

Kathleen_Mc

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #5 on: February 21, 2018, 03:35:46 am »
Personally I so wish I could have had radiation with my initial tumor but alas even if it was here in Canada my tumor was too large when found and I'd already lost 50 % hearing etc etc.....go for it ! I think my long term quality of life would have been much better.
Just my two cents
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Walkos

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #6 on: February 21, 2018, 05:45:03 am »
Thanks, Kathleen. This decision has been quite stressful. I was supposed to call earlier this week to schedule the treatment but I hesitated. I am not sure why - I guess I don’t want to have any doubt. There is some doubt creeping in because of my age. Based on all I’ve read, I still think it is the appropriate path for me. I just need to temper the fear of the unknown.

Thanks for your response. It helped.

KeepSmiling

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #7 on: February 22, 2018, 08:46:42 am »
Consider Proton Therapy.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Greece Lover

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #8 on: February 22, 2018, 12:12:59 pm »
Your story is quite similar to mine.  I was 1.2 cm. mild tinnitus and hearing loss. 100% wrs on hearing test.  I opted for surgery and am very happy that I did.  But everyone needs to make their own choices.  My only question based on what you posted is this:  the literature I read did not support the idea that radiation was a good strategy for long term hearing preservation. 

Best of luck with everything. 
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

Walkos

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #9 on: February 23, 2018, 09:00:36 am »
You are right.  One study I read states that long-term (7 years post-radiation) hearing preservation was ~32%.  This is my biggest concern.  Conversely, I also read a study (I believe in the Journal of Neurosurgery, Dr. Kondziolka was one of the authors) which states that if patients have a small AN,
 are <60 years old, with high level of hearing retention and high word recognition, then hearing retention after 5 years was actually quite high (~70% I believe).

This touches on a key topic -- there seems to be literature supporting a variety of treatment modalities.  Some literature states that wait and watch is appropriate b/c these tumors are slow growing and a critical number of patients experiences no tumor growth 4 years after diagnosis (I believe ~40% of patients is the number).  Conversely, there is some literature that states early intervention results in better outcomes and increased likelihood of hearing retention (i.e. wait and watch sacrifices hearing).

Then, some literature states microsurgery is better for patients that do not have any existing conditions which would make them not a candidate for surgery.  Conversely, other information leads one to believe radiation is better for certain individuals with tumors of a certain size.

And then, there is a Mayo Clinic study that states patient quality of life is approx. the same regardless of treatment modality (microsurgery vs. radiation). 

I've read a lot (like many here), probably too much.  Honestly, I've reached the point of diminishing returns (if anything, I'm getting negative returns for my time spent reading on this topic.).  This is what I've learned - I am not an expert.  I've been thrust into this world ~1 month ago.  All my reading is a drop in a bucket to the data which very experienced surgeons have on this topic.  I also know surgeons have biases -- whether it is their training, their willingness (or lack of) to change approach based on new info., or financial incentives.

Surgeon engagement is another topic.  Some are wonderful -- they spend quality time with you (30 mins or more), share detailed information about your specific situation, are compassionate, etc.  Others are not so wonderful -- spend 15 mins with you, stare mainly at their computer screen as they document the conversation, and maybe give you 4 mins of eye contact. 

ANs are an interesting heath care topic.  They are not life threatening, however, they can have a significant impact on quality of life.  The incidence is low so we may not see a robust, convincing study in the foreseeable future recommending approach X versus Y. 

So...what to do...I guess evolve the conversation with the surgeons to address 'my' specific situation.  Size of tumor, location (vs. cochlea), age, work/life, etc...  And then, make a call about the treatment modality (or lack there of) and surgeon.  Feel good about that call.  To some extent, this seems to be a probabilities game. 

 


Greece Lover

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #10 on: February 23, 2018, 10:31:05 am »
I couldn't agree more with everything you said. And,I think you're right about how to make a decision.  Know and understand the risks and probabilities, but you still have to decide with your gut, and a huge part of that is comfort and trust of the doctor.  I have a Ph.D. and I couldn't use all the medical studies to help me make a decision, and really, that's not what they're written for.  They're written for doctors to help advise patients, not to help patients make a decision. 

This is a terrible process, and you seem to have a great self awareness through it all.  Although I wish this had never happened to me, it also has become integrated into who I am. I can't conceive of myself without the tumor and its removal. And, in some ways, it has helped me.  I think it has made me a better teacher, a better spouse, and a better parent.  And, partly I can be positive because I had such a good outcome.

I wish you peace!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

Walkos

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #11 on: February 24, 2018, 07:00:07 am »
Thanks. I agree with you. You are very right - this has definitely made a better person (certainly more patient and aware of life’s priorities).  It has also taught me the importance of optimism.

Someone recently shared a great quote - “optimism is a force multiplier.”


SueLL

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #12 on: February 24, 2018, 08:14:04 pm »
Just one piece of advice - don't make yourself crazy with research and the statistics, as they have no bearing on what ultimately happens to YOU.  I had a small AN treated with GK at UPMC.  I lost my hearing within 6 months of the treatment.  Here I am over three years out, and I am one of the small percentage of people for whom GK did not work.  A cyst has formed out of my tumor, and the tumor itself has grown.  I am now facing surgery.  I have defied all the statistics - in the wrong way.

Good luck with the decision and whatever procedure you select, but much of the outcome is likely beyond your control!
Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

Jakey

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #13 on: May 06, 2018, 10:28:26 am »
Love your Feb 23 summation, couldn't agree more.  While a thorough understanding of one's options is critical, quite frankly, everyone's situation on this board is different, as are their objectives for recovery.  The most important thing is that you like & trust your neurologist.  I hope you've found someone you like.  In the end, it really is a probabilities game, and choosing the best treatment & doctor may win us a few percentage points, but we're still just rolling the dice. 

So it sounds like you're leaning towards fractionated GK treatment via ICON.  I'm scheduled for that same procedure on June 4 at Columbia in NYC.  It'll be five treatments over five consecutive days.  Feel like this gives me the best opportunity for preserving my hearing.  My understanding that this new approach has less of a chance of damaging your hearing due to the lower doses spread over time, which makes sense to me.

I'm 52 years-old, and my AN is only 3mm, but due to its location, it's having an outsized effect on my right ear hearing.  In just eight months since diagnosis, my hearing has gotten dramatically worse, so much so that I'm having the procedure now instead of watching & waiting for several years.  At this point, I really just want to save what hearing I have left.  I can deal with the tinnitus, although that really sucks too.  I'm hoping that maybe it'll go away with treatment, but from what I've heard, that sounds like a longshot.

Best of luck to you, and would be interested to hear your thoughts post-ICON procedure if you're willing to share.  I'll probably post my experience once it's over.  Like you, I was on this board a lot when first diagnosed, then laid off it for six-months or so, but now that I'm about to enter treatment, I'm back on.  I think it's most helpful for the newly diagnosed, so if I can help those folks feel better about their options, I'm happy to share my thoughts/experiences, but you need to be careful in just how seriously you take people's opinions in an environment like this. 

Regards,
JK   

Abetpds

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Re: Recently Diagnosed - 38 year-old, 1.3 cm AN
« Reply #14 on: May 06, 2018, 02:59:10 pm »
i am 70 years old with a tumor 29.1 mm x 28.1 mm x 29.1 mm  Thinking of surgery - but investigating the Mifepristone drug that Mass Eye and Ear did studies on saying that it will curb growth.  I have no symptoms (Praise God) other than hearing loss in left ear - inspite of the fact that its pressing on the brain stem.  Would rather not do surgery but my doc feels I should do surgery since it grew from my MRI done 3 months ago.  In a dilema as to whom to go with, where to do it at, and what my condition will be like after surgery.  I am perfectly fine now.  Appreciate any inputs.
Regina

 


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