Newly Diagnosed 30 years old, 3 cm meatball

[pswift00]

Folks,

Hello, this is my first post.  I was diagnosed about two weeks ago with a 2.9 cm AN on my left side.  I am a 30 year old male. The tumor was discovered quite by accident-  I had the flu for 5 days straight, and went to see my PCP complaining of fevers, night sweats, headaches, and a stiff neck.  He immediately sent me to George Washington University Hospital to rule out meningitis.  Once I got to the ER, my headache had subsided a bit and I was joking around with the hospital staff, so they quickly ruled out meningitis without having to do a spinal tap, which was all good.  However, the doctors decided to do a CT scan to rule out an anuerysm 'while they had me there.'  So, long story short, they find a big meatball in my brain, admit me to the ICU overnight, do the MRI, and make the diagnosis.  Currently I have absolutely no symptoms whatsoever- zero hearing loss, no balance problems, vertigo, facial numbness, etc.  My consulting neurosurgeon, Dr. Caputy, told me that, given the size of the tumor, I still have the option for radiosurgery.  He also laid out all of the depressing statistics with regards to hearing retention, facial paralysis, etc related to microsurgery.  We were warned in advance that the guy had no bedside manner whatsoever, but what he was telling us came as no less a kick in the stomach.  My wife has a friend who is a neuro-oncologist down at Mayo in Jacksonville, FL, and she sent a copy of my MRI's down to him and he had his staff take a look and he presented each of them with the question- if this were your son or daughter, what form of treatment would you opt for?  Both of them opted for microsurgical recision.  Quite frankly, I'm completely confused as to why they would prefer this option over radiosurgery given everything I've read about microsurgery the possible side effects, consequences, and outcomes.  They say the tumor is pressing on my brain stem, so I'm guessing that, along with my age, is why they're leaning towards that approach.  After all, if I can expect to live another 60 years, and given the size of the tumor right now, maybe the best approach is to remove it all together, and given my age maybe they expect my recovery process to go a bit more smoothly than someone who's a bit older.

But really, I'm just hoping someone here can shed a little light on this for me- if I'm looking at a 4-5 week minimum recovery time for microsurgery, plus the hearing loss, high risk of long-term, if not permanant facial paralysis, balance problems, etc., then why on Earth would anyone choose such an option over radiosurgery or FSR?

Thanks in advance for taking the time to read this and your support.  I've always been a 'stop crying and start finding a solution' kind of guy, and I'm really trying to approach this issue in the same manner, but it's still pretty hard not to get overwhelmed sometimes when I think that my quality of life may be forever diminished by this.

[Debbi]

Good morning!

Well, m aybe not "good."  So sorry to hear about your diagnosis, but glad you found this forum.  So, here are my thoughts...

First, know that most ANs are very slow growing, so you have some time to research and consult with medical experts.

Second, it is very important that you find a treatment team that has experience with ANs.  This would be true no matter which aproach you choose.  Your risk of after effects is less with an experienced treatment team.  You'll find folks on this forum who have had all different types of treatment from Gamma Knife to Cyber Knife to microsurgery (me).  I think we'd all tell you that you need to have total confidence in your doctors - regardless of the approach you chose, someone is going to be messing around by your brain!

As for why some may be recommending mcrosurgery - I can only speculate on that, but I would guess that your young age may be one of the reasons.  A bigger reason may be the placement of the AN - if it is pressing into your cerebellum, post radiation swelling may be more of an issue.

I will also say that facial paralysis is not a given with microsurgery, although the risk is certainly there.  I am almost 7 weeks post translab surgery and have some temporary paralysis.  It is frustrating, but I am confident it will resolve in time.  This particular after affect depends on how close the tumor is to your facial nerve - in my case the facial nerve was stretched across the top of the tumor and that is what caused the palsy.

I am guessing you are on the East Coast?  If so, you are close to some excellent treatment options.  If you'd let us know where you are located, I am sure you can get some names of specific doctors who specialize in ANs.

I now you will get a of other responses to this.  Meantime, read through some of the other threads - MaryBKArix posted a recent very detailed thread on her cyber knife experience; I have posted details on my translab; and many others have shared their own experiences.  Many of us are very willing to talk with you on the phone, if you'd like - in my case, if you would liek to talk at any point, just send me a PM and we'll exchange phone info.

One final suggestion - request the AN brochures from the ANASUA (this website) as they contain some great basic information.  And, lastly, try not to get overwhelmed - there is a lot to learn and it can all feel like a bit much at times.  Give yourself time.

Debbi - New Jersey

[Sam Rush]

Sorry about your diagnosis.

In re: to microsurgery, there is a GOOD chance, that in EXPERIENCED hands, you could preserve some hearing and avoid facial paralysis. Where do you live?? The people on this forum can recc. treatment centers with the best results.

Sam

[sgerrard]

Some quick comments and a link:

1. 2.9 cm is the upper end of the range for radiation. Size is an issue, especially for post treatment swelling and pressure on the brain stem.

2. You can often get a free evaluation of an MRI if you can mail it to one of the Cyberknife doctors on the CK forum: http://www.cyberknifesupport.org/ . It is well worth the time to see what they have to say, whether you just ask a question or send off an MRI.

3. The combo treatment is another option: debulk the tumor surgically, to reduce its size, while staying clear of any nerves. Then radiate the remainder. This gives the benefits of both treatments while minimizing side effects.

It will change your life in some way, but most people make it through just fine, and go on to live rich full lives despite it all. It is a chapter in your life, but not the whole book.

Steve

[Kaybo]

Hello~
Debbi had some very good points and the most important is to research & do what YOU are comfortable doing.  You must have a strong PEACE about your decision because you will have to live with it.  I don't know much about GK or CK, but isn't the size of your tumor right on the edge?  Some of the others can certainly address that more clearly.  IMO, if your wife's friend was asking the Dr.s' as a colleague about what they would do if it was their child, then I think I would put a lot of stock in their answers IF they are schooled on BOTH methods: surgery and radiation.  Does that make sense?  I'm not going to sugar coat anything - I DO have permanent facial paralysis (& have for over 12 years) but that hasn't stopped me one bit!!  Do I want to look like this?  NO, but I am choosing to make the most of life and I am not going to let a little thing like that stop me!!  I would be glad to chat with you on the phone if you want to PM me your number or you can check out my blog (address below) & see what a great life I have 12 years after surgery!
Good luck in you journey!
K

[Jim Scott]

pswift00:

Welcome to the forum and I'll hasten to add that I'm sorry you have a reason to be here but I'm glad you found us.

Granted, your AN is treatable with radiation, which seems the logical choice.  However, radiation is not a panacea and carries it's own risks, albeit, fewer than microsurgery.  The doctors you've consulted are looking at a few things, including the possibility of future regrowth and of course, at your relatively young age, the fact that you'll have reached close to the safe lifetime radiation doses your body can safely handle, which is always a factor.  The fact that the AN is pressing on your brainstem is obviously a major factor in their recommendations.  Besides, contrary to what seems to be a common belief, AN surgery, while challenging for the surgeon, does not automatically result in facial paralysis, and the other complications you've undoubtedly read about.  I had a very large AN, pressing on my brainstem.  I underwent microsurgery to 'debulk' the tumor down to about the size yours is.  Then, 3 months later, I underwent 26 FSR treatments.  I recovered completely from the surgery and had no ill effects from the radiation treatments, which ended 20 months ago.  (see my signature).  I may be fortunate (blessed, really) but I'm not the only AN patient posting here that had a successful (no complications) AN-removal surgery.  Obviously, the final treatment decision is yours, alone.  I'm simply offering my experience to give you another perspective.

The fact that you have no symptoms is very encouraging.  I would strongly advise that you have either the surgery or the radiation asap, before you suffer hearing loss, facial numbness, etc, which you likely will, if the AN grows.  Frankly, your hearing may be diminished with whatever treatment you choose but the sooner you do something, the better.  However, don't be overly hasty.  Do your research (this site is chock-full of information you can use) and choose your team - be it surgical or radiation - carefully.  Look for as much AN-related experience as possible on doctor resumes.  Others will add more advice on this subject as they respond to your post.

I wish you much success in coming to an informed decision on treatment of your AN.  We can't offer medical advice but, as AN patients, we stand ready to assist in whatever way we can.  Don't be a stranger. 

Jim

[pswift00]

Thanks, guys- I live in Alexandria, VA and work in downtown DC.  I have an appointment next week to talk to some folks at Georgetown University Hospital.  As  previously stated, I was diagnosed at George Washington UH by the head of the department, Dr. Anthony Caputy.  I'm currently getting my records together to send to Johns Hopkins, but it seems like that's one of those places where the doctors choose their patients and cases, not the other way around.  If anyone can recommend any other hospitals in the area, I'm all ears.

P.S.- I received the packet from ANAUSA yesterday and reviewed it.  The post-microsurgery expectations weren't terribly reassuring, but I know the point is to lay the WCS out there in order to be prepared for it.  The internet has also been a wealth of information. 

[leapyrtwins]

Hi and welcome.  I see I'm tuning in a little late but will give you my two cents worth.  Some of what I have to say has been said by others already.

2.9 cm is in the upper range of radiation, which is probably why the doctor suggested surgery.

Yes, surgery usually has a 6 week recovery period and possible side-effects, but there are some very positive stories out there.  IMO, I am one of them.  I had surgery approximately 1 year ago and with the exception of SSD (single-sided deafness) I have no lasting surgical side-effects.  SSD can be alleviated, not reversed, with an aid (Transear, Cros aid, or BAHA).  I opted for the BAHA - which is another story for another time.

Everyone's AN journey is different and you may or may not experience side-effects from surgery - or radiation, for that matter.  The most important thing is to find a doc with experience in treating ANs. 

I'm glad to see you got information from the ANA.  I'm assuming you received a WTT (willing to talk) list.  If so, I would recommend contacting someone in your area and ask who treated his/her AN.

Please feel free to ask us anything; we are all here to support you, regardless of your treatment decision.

Good luck,

Jan 

[Debbi]

HI again PSwift!

If you do a search for "elderbirds" on this forum, you can PM her (her name is Hope) and find out where she had her surgery.  She had surgery about several months ago in the DC area.  I'll also send her a quick email and ask her to look for your post.

And don't let us folks who ended up with temporary crooked smiles scare you - there are LOTS of people wh have zero facial problems.  As you say, best to be prepared for WCS, but your experience may be completely different.  

Steve's suggestion to send your films to the cyberknif forum is great!  You may also want to send your films to House Ear Clinic in LA - even though I think they only do surgery, they are a leader in the field and will do a free phone consult with you after receiving your MRI.

Good luck!

Debbi

[cynthianz]

Kia Ora from Auckland, NZ!  4 weeks ago, we were just diagnosed, too.  And my surgery , translab, because the bugger is so large and b/c I am young (40) my hearing will be sacrificed/gone on the left, but hopefully, any facial paralysis will be minimized.  Health system is a bit different here and they basically told me what I had and what they were going to do......while I read everywhere else about interviewing docs and getting opinions till you and your familiy were comfortable.  Well, now with time and talking, we are comfortable and all will be well, but we know recovery is going to be a toughie.   

I empathized with you at the beginning of this quest -- but urge you to have an advocate. My husband asks the questions I might be too emotional to get out, and he helps translate for the docs so I don't only hear the worst case scenrio.  Have an advocate and a safe spot or someone who will just let you scream and cry or be quiet if that is all you want to do.

Past few weeks, I've been collecting tumour sized rocks from the beach.  Early this morning my sister and I tossed them back to the ocean.  Gone.  Sounds hokey, but was theraputic.

Now, I feel like I can face the dressing gown and hair shave....and all else. 

God be with you.  Ask questions.  Cynthia

[leapyrtwins]

Past few weeks, I've been collecting tumour sized rocks from the beach.  Early this morning my sister and I tossed them back to the ocean.  Gone.  Sounds hokey, but was theraputic.

Actually Cynthia this is an excellent idea.  Wish I would have thought of it 

Your advice to have an advocate is also a good idea.  At the very least, AN patients usually find it helpful to take someone to consultations with them because some of what we are told is so overwhelming.  I think that several members of this forum have also recommended recording the consultation so you have something to refer to later since things can be such a blur.

BTW, very precious picture of your children.  They are beautiful - and so sweet 

Jan

[cynthianz]

Thanks Jan -- yes i had to have an advocate figure out the uploading hoopla to get it posted.


i am showing the docs this pic of my babies cuz they will have to bring me back to them better than ever.  no discussion.

[Debbi]

I second the advocate suggestion!  That was a life-saver for me.  it is very hard not to overload at times.

Cynthia - my translab was 7 weeks ago and I feel better each day.  I did, unforunately, end up with facial palsy, but it is slloowwwwlllyy getting better.  Love the rock idea ... 

Pswift - take a few deep breaths every now and again - you're in for a wild ride!

Debbi

[Nicole222]

Hi!  I'm sorry to hear of your diagnosis.  I'm actually from Jax, Fl, and just had a 3.5 cm removed surgically on May 9th.  I was also told that radiation was not best for me b/c I am young, 34 and because it does not get rid of the tumor--it only shrinks it.  They felt that I would deal with a lifetime of MRI's and wondering--and treatments.  They felt mine had regular "growth spurts".  They may have told you this also b/c of the location--pressing on the brainstem.  I had wonderful surgeons and a great result.  I did lose my hearing on that side, but I already had a loss to begin with.  I have no facial paralysis and I know one other girl--late 20's who had a 4+cm removed by these two surgeons and also had no facial palsy and did retain some residual hearing post surgery.  Dr. Greene was my neuro-otosurgeon and Dr. Chandler was my neurosurgeon. Best of luck with your decision on treatment   We are here for you!

[er]

I am so sorry to hear your results.
I had  microsurgery, I did have some problems but I have done a lot of healing. I did lose my hearing on my left side, I was back to work in 3 weeks I asked my doctor if I could and he couldn't see why not. Looking at me now you would not know that I had facial paralysisation, when I speak you can see that my left side of my mouth struggles to move. I have not had to use drops in a few months. So there is recovery . Then their are so many others in this forum that did not have any problems.
eve