Author Topic: what can I do?  (Read 8169 times)

Ellie

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what can I do?
« on: March 03, 2009, 01:29:41 pm »
Hello everyone,
Im new.  Ill tell you my story.

Im from england.  My partner was diagnosed in october 08 with AN after hearing loss gradually over a year or two and tests showed nothing he was sent for an MRI.  He was referred to a Neurosurgeon and was advised to watch and wait.  After getting headaches over a few months, and told by our family doctor that it was possibly sinus problems he was sent for another MRI "to be sure".

Today we had the appointment for the results.

Im in shock a bit,  it has grown we were told by a "team of surgeons". since the last mri 4 months ago.  so he was asked what he wanted to do.  We were told that the chances of facial paralysis and total hearing loss would be greater the bigger it got, so the sooner he had it out the less risk.  It is still small about 1 and half cm.  we were sat looking at the screen and didnt really know what to do.  He just said take it out!  we are going on holidayon May 1st and back 8th and they sat looking through their diaries and booked it for 22 \May.  he is in shock but wants to do it although he is really nervous about paralysis he said and I can tell he is more worried than he is letting on.

What can I do, what experiences have others had and what advice can anyone give me to help him, what can I say and do to make him feel better?

i came straight home to look on the internet and found this website i have had a bit read and it seems a huge decision and we have just made it in about 10 minutes as we felt to wait would make it worse!  please help.  he does not know I am on here!

thanks

ppearl214

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Re: what can I do?
« Reply #1 on: March 03, 2009, 01:58:51 pm »
Hi Ellie and welcome to you (and your partner). I'm sorry to hear you all are enduring this, but know that you are doing the right thing... research, research, research.

(BTW, my bloke of a husband is originally from the Darlington area but his family is now in Shaftesbury.... I am 'Merican of Yorkie stock/heritage)

I have had the honor of meeting many AN patients (and speaking to many) during recent trips to the UK. I am not sure where in the UK/England you are located.  I know of many terrific AN treating physicains that have been noted to me in C. London.  I know of some treated up in Leeds... please let us know where you are.

I know you all are in "shock" right now, but did the dr's elaborate on what they deemed as "growth" since the baseline MRI vs. today's read?  Head MRI's have a total margin of error of approx 2mm.... so, was there a difference of much more than 2mm?  Since your partner's AN is still deemed small to medium, you may not need to act that quickly.  He also has an option for radiation instead of surgery (based on the size,..... but other factors still have to be taken into consideration.... ie: pressing on brainstem, etc).....so, radiation may be an option (Gammaknife is traditionally used in the UK, although there is a new Cyberknife Center on Harley Street in C. London as well).

There is much info available here for you all... please try to take a deep breath (I know, easier said then done). I'm also hoping many of our users here from the UK will chime in (where's Tony and Derek and others when we need them? :)  ) to help with additional, UK-based info.

It's going to be ok... you came to the right place to help out... for many of us here (myself included) are walking in the same shoes... hang in there.

Again, welcome!
Cheers!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellie

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Re: what can I do?
« Reply #2 on: March 03, 2009, 02:32:35 pm »
Hi Phyl,
thank youfor replying.

We weren't told exactly how much the growth was you could tell just by looking that it had grown and he has now made his mind up he is going to have it done. 

Im from the north of England a place called Sunderland, near Newcastle.  The Newcastle General Hospital, specialises in neurosurgery and that will be where he is having it done.

x i just need to know how to help him deal with it.  He has just text me to say all he is thinking about is the operation! 

Pooter

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Re: what can I do?
« Reply #3 on: March 03, 2009, 03:58:43 pm »
Ellie,

Welcome to the forum.  It's normal to be scared about now.  We all have been.  I'm with Phyl in thinking you should get a second opinion from a radiation specialist if you can because your mate is well within the size range to be considered a possible candidate for radiation.

If you're deadset on having surgery done (which is possible), then read my blog (address below in my signature).  I had surgery in May last year.  There have been bumps in the road, but after its all said and done I think I'm a "success story".  I'm upper-30's with 2 small children.  Not yet 6 months after surgery, I was going camping again with my daughter. 

The best advise that I can give you as a caretaker for one having surgery is to be patient with them.  They will likely be dealing with balance issues, taste issues, facial weakness, etc..  Be patient with your mate and be there to help him adjust and get through it.  My mate was my ROCK during and after surgery.  She went with me to every appointment, stayed in the hospital with me after surgery, generally let me heal after surgery by taking away all of the external stress from me. 

Read my story for more..  It's pretty detailed and long, but it gives you a good understanding of what a patient will possibly be dealing with both before and after surgery.

You've come to the right place for answers..Welcome aboard!

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Ellie

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Re: what can I do?
« Reply #4 on: March 03, 2009, 04:16:45 pm »
brian thanks,
its all new to me.  we were told that it had grown since the last scan and that radiation would only halt the growth and that eventually he would need to have it out and that sooner would be better than later as there would be less risk of facial paralysis which is his greatest fear.   

he is only 41.  wont it be more risky the longer he waits?  its his desicion although we have discussed it together and its what he has decided.  i always go to all his appointments.  i myself, am a medical secretary although not at this hospital and not in this speciality.  I support him all I can.  he is only just recovering from a hernia op 4 weeks ago, and just back on his feet.  I have said I will be with him throughout and he wont get rid of me. 

lori67

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Re: what can I do?
« Reply #5 on: March 03, 2009, 04:38:38 pm »
Ellie,

Welcome!  Glad you found us.

I think when you are first diagnosed with something like this, it's hard to think of anything else.  It's all new and scary.  I know that's how I felt.  But the more research I did  and the more time I had to get used to the idea, the more I could focus on other things a little better.

I can't imagine how hard it much be for the caregivers in this case.  I know the whole thing was probably much harder on my husband than it was on me. He would vary from being really overprotective and treating me like I was deathly ill to acting like I was perfectly fine.  Both of those made me mad, so I think somewhere in the middle would be most helpful to your partner.  And the fact that you are obviously very supportive has got to make him feel better.  Try not to take it personally if he isn't always pleasant during this time - I know a few times I snapped at my family and it wasn't really directed towards them - just frustration with the whole situation that needed to be vented somewhere, I guess.  We always hurt the ones we love!

There is a lot of information on the forum about all aspects of surgery, so maybe when he's ready he might read through it a little and see that there are a lot of us that made it through this just fine.

Good luck to both of you!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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Re: what can I do?
« Reply #6 on: March 03, 2009, 04:39:08 pm »
Greetings, Ellie:

I'm sorry you and your partner have to deal with an acoustic neuroma, but I'm pleased you've discovered the ANA website and these forums.

As Phyl ('Ppearl214') stated: with the relatively small size of your partner's AN, there is no need for undue haste in making a decision on treatment.  However, we can understand his emotions (and yours) at this time because we've all experienced them after receiving the AN diagnosis.  That being the case, although we're not physicians, we can offer practical suggestions  - and lots of support for both of you.  You asked about experiences so I'll take the liberty of offering mine, with the hope that it will be an encouragement to both of you.

I was 63, in good health - and concerned about facial paralysis after receiving my diagnosis of a large AN pressing on my brainstem (not good).  Even though my symptoms were not severe, my surgeon was quite alarmed.  So much so that he scheduled my surgery to take place within a fortnight.  It ended up being three weeks, and I went through the usual angst, even though I knew that the tumor was benign and that I had a better chance of winning the lottery than having the surgery kill me.  Much like your partner, I searched the internet for information about acoustic neuromas and their treatment and came to the conclusion that facial paralysis was the biggest possible adverse effect of the upcoming surgery.  That, naturally, concerned me.  My neurosurgeon, a man with decades of surgical experience removing acoustic neuromas, assured me that, although he couldn't absolutely guarantee anything (which I understood), he would employ facial nerve monitoring during the surgery and do all that he possibly could to spare the 7th cranial nerve (the 'facial' nerve).  His plan was to 'de-bulk' the large AN (4.5 cm) that is, to reduce it's size by basically hollowing it out and cutting off it's blood supply.  Then, after a period of cranial healing (three months), to have the remaining tumor treated with irradiation (FSR- fractionated stereotactic radiotherapy) intended to destroy the tumor's DNA, thus, effectively killing it.  I wholeheartedly agreed with this 2-step approach, even though it involved surgery plus radiation, because my trusted neurosurgeon and the bright young radiation oncologist he worked with on 'plotting' my FSR treatments, were highly confident of success, meaning a desiccated tumor. 

Long story short - the retrosigmoid approach surgery went smoothly with no permanent post-operative complications (i.e. facial paralysis).  With the exception of being deaf in the affected ear, as I was prior to my diagnosis, my symptoms disappeared.  Three months later, I began a tedious but painless series of FSR treatments; 26 in all, one a day (about 25 minutes), five days a week for five weeks - and one day.  I had no ill effects from the 'low-dose' radiation.  My last MRI scan (August, 2008) showed definite tumor necrosis (cell death) and shrinkage.  I was elated.   

Today, some 33 months later, I've basically resumed my life.  I'm a Deacon in my church, I enjoy getting out and my wife and I will celebrate our 39th wedding anniversary in August.  Granted, as a retiree, I don't have the stress of work, but I'm active and have a full life, including the time I give to this website with the intention of helping others with this somewhat rare condition.   

My best advice to help assuage your partner's fears is to reassure him that this is not only a benign tumor but that post-surgical facial paralysis can be avoided.  Even if it occurs, it's often temporary.  If not, there are various surgical procedures available to address this situation.  In addition, as Phyl stated, (non-invasive) radiation is another possibility and surgery does not have to assumed to be the sole option available to him.  Be aware that radiation isn't a panacea and also carries risks but remains an option for small ANs.  Unfortunately, my AN was too large to consider radiation, but had it been smaller upon discovery, I would have seriously considered it. 

I sure you'll receive many other replies and suggestions on this thread.  I trust they'll be of some help to you.  Meanwhile, know that many will be thinking of you and your partner and that we stand ready to offer whatever help we can give along with our full support.  Please consider this website a resource.  We want to help.  :)

Jim

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Pooter

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Re: what can I do?
« Reply #7 on: March 03, 2009, 04:50:43 pm »
brian thanks,
its all new to me.  we were told that it had grown since the last scan and that radiation would only halt the growth and that eventually he would need to have it out and that sooner would be better than later as there would be less risk of facial paralysis which is his greatest fear.   

he is only 41.  wont it be more risky the longer he waits?  its his desicion although we have discussed it together and its what he has decided.  i always go to all his appointments.  i myself, am a medical secretary although not at this hospital and not in this speciality.  I support him all I can.  he is only just recovering from a hernia op 4 weeks ago, and just back on his feet.  I have said I will be with him throughout and he wont get rid of me. 

For what it's worth, I think you've gotten a surgeon's opinion about radiation.  True, waiting longer can increase the risk of symptoms, but we're talking in terms of months or years later not days..  It sounds as if you are being bullied into thinking that the ONLY option is surgery.  While I don't know the specifics of your case, you certainly appear to have that option to go the radiation route.  Find a radiation oncologist with experience in Cyper Knife, Gamma Knife and specifically with treating AN's and seek out there opinion.

Where this thing grows is right near 3 nerves (balance, hearing and facial).  The most important is the facial nerve.  That's why you see a higher risk if you wait.. however, it really depends on the exact location of HIS tumor which will dictate symptoms.  The fact that he has an AN in and of itself doesn't necessarily raise or lower the risk of facial problems.

Heck, mine was 33mm (3cm) and I had only temporary weakness after surgery.  That was because of the location of my tumor..

I think you have some time to seek out the opinions of other surgeons and radiation oncologist..  His is less than half the size of mine.. at a typical growth of 1-2 mm per year, I think you have some time to consider ALL options available to you...

Food for thought..

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Sue

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Re: what can I do?
« Reply #8 on: March 03, 2009, 05:41:50 pm »
I like what Pooter said, that you got a surgeon's view of radiation.  Right on, Pooter!!   Most radiation patients have good results and this results in the death of the tumor and it quits growing and sometimes shrinks, but it never melts away.  This does not mean that you have to have surgery later to remove the "remains" of the tumor.  It just is rendered - well....dead.  It is a viable option for many patients, if that is what they want.

Best of luck to the guy in your life and I hope that all goes well in his treatment and recovery.  Please read this article on how the balance system works and the various ramifications of having it damaged. He should read this too, of course.  It's very interesting and will help explain some symptoms that he might not even be aware of, or might have down the road.  Knowledge is power.  ;)

http://www.hearinglosshelp.com/articles/balancesystem.htm


Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

moe

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Re: what can I do?
« Reply #9 on: March 03, 2009, 11:44:50 pm »
Docs say if you're going to get a tumor, this is the one to get. Benign, small growing. Surgery most likely will be successful since it is a small size. Still wouldn't hurt to get a second opinion. Unless it is pressing the brain stem, alternate treatment is worth looking into.
Brain surgery is a big deal.... The doc needs to go over all options, and why he says "take it out now.!"
Hang in there- it is small, slow growing. When they said it grew, how much? How many mm's? That's  miniscule. If he said it grew a cm  then that is another story.
Good luck,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

ppearl214

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Re: what can I do?
« Reply #10 on: March 04, 2009, 06:47:42 am »
Hi ellie,

Hope you got some sleep last night and both of you are hanging in there. I knew others would chime in with wonderful suggestions/thoughts as they always do.... and hoping it is of help.

From your standpoint, as the "caregiver", please take a moment to check out the "Caregivers" Forum.... some wonderful thoughts/experiences there for you as to how to deal with this......many that participate on  this site are not AN patients but family/friends/loved ones of AN patients, so they share much here..... just a thought.

As for your partner.... I mentioned this to my bloke and since you are in Sunderland, he said the care at Newcastle is good.  I don't personally know of other AN patients that were treated at Newcastle General but hoping the UK gang here chime in with any/all experiences up that way.

The texts may be flying and the nerves on edge.... so please remember for both of you to take that perverbial "deep breath" to be able to step back, allow clarity of thought and then, forge forward.  You are doing everything right by sharing and asking here.... and seeking out answers to help you both.  Please hang in there and know we are here, as best as we can be, to help you all through this.  Maybe a soak in a good Radox "Relax" helps... I live for it! :)

Hang in there Ellie (and to your partner as well)..... hoping today is a little better for you.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

RichardS

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Re: what can I do?
« Reply #11 on: March 04, 2009, 09:11:40 am »
Hi Ellie and Partner,

I'm in Manchester in the UK, waiting for a sensible diagnosis of my symptoms. I have started doing some research, and would recommend you have a look at the web site for the Gamma Knife centre in Sheffield.

http://www.shef.ac.uk/~ns/web/GammaKnifeHome.htm

It is an excellent site with short videos explaining the procedure. Worth taking a look if you are not wholly sure about your decision.

Hope it all goes well for you both

Regards

Richard

Ellie

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Re: what can I do?
« Reply #12 on: March 04, 2009, 01:48:44 pm »
Hello everyone
thank you so much for all your messages of support.  I will go onto the carers forum as well phyl thank you, you are right about how confused i am x x x   :-\  & I have more questions that I need answering now from people like yourselves who are going through or have been through what he is going through now. there is a time difference here but I have read through all the replies and been thinking and read them all again tonight.

Thank you all,

Jim, in our consultation yesterday we were not even told exactly which nerve the tumour is on ?  We dont know the location of the AN ~ balance hearing or facial I think he is not that bothered about hearing as he has almost no hearing anyway in that ear. In reading the posts that seems to be a crucial part of the decision making process as to whether to have surgery now or later or at all.

We weren't told whether it was on the brainstem or not.  So I am assuming it is not?????? or would we not have been given any options? or moe, we were not told exactly how much it had actually grown but you could see it on screen.

Richard in England  hi ~ is it different over here as to in the US? we are having treatment on the NHS but I do know Newcastle is a good hospital that specialises in neurosurgery, i would love to hear from anyone out there who has had treatment there.
are you going private??  what is your thoughts about radiation treatment here i dont think we were encouraged to have it but may be on his unique AN ?

Jim, we were told yesterday that he could be back at work in 3 months or sooner!!! is this realistic?

sue, I also get the feeling that we were urged to take the surgery route, as the radiation was explained almost as though it was just a delying tactic. 

lori, it helped what you said about the way your husband being overprotective to pretending its okay, which is what Ive been doing over the past 24hours!!!!!  i went to see him at lunch and we spent the whole hour just hugging each other and not speaking at all. we didnt seem to need the words then. 

he is the type of person who once he has made the decision thats it.  not sure he will change his mind now, he has made the decision.  I want to be able to approach him with this info.  but i feel i need to do a massive amount of research before I can even begin to know what I am talking about and its his desicion at the end of the day.


thanks everyone
elaine xxxx









Pooter

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Re: what can I do?
« Reply #13 on: March 04, 2009, 02:20:01 pm »
Elaine,

Now that some of the intial shock has worn off.. now's the time to do your homework.  Unfortuately, a lot of your "reasearch" has to be done at the surgeon's / radiation oncologist's office with your mate (and MRI's).  I would seek out another doctor to get another opinion.  Heck, visit another surgeon and a radiation oncologist or two.  Listen to what they tell you about options.  I don't think that you're being given the full picture of options available with the current surgeon.

Generally speaking (and to get specifics about your case, a talk with multiple doctors is in order with your MRI's), radiation is considered an option up to about the 2cm point and no putting pressure on the brainstem.  The reason for this is that radiation often results in temporary swelling of the tumor and if you're already putting pressure on the brainstem, then adding more size increases the risk for complications due to compressing the brainstem more.  A good, reputable radiation oncologist with AN experience should be able to tell you if it's a problem doing radiation given the current size and location.

To answer your question to Jim, I think 3 months should be MORE than enough time to return to work.  Jim resumed a relatively normal schedule after a couple of weeks following surgery.  I went back to work about 6 weeks after surgery.  USA doctor's generally say 4-6 weeks after surgery.  Some take longer; some very short.  There is no hard and fast rules regarding this, but generally 4-6 weeks is common.

Regarding surgery vs radiation..  Radiation is definitely not a "delaying tactic".  Yes, surgery is more immediate in dealing with the AN, but radiation's goal is tumor death (and to stop it's growth) so that further symtoms don't creep up, etc..  With radiation, then tumor generally remains, but it's dead (hopefully) and not causing any further problems.  One doesn't have to do something else after radiation treatment unless it fails.

You're discussing options concerning your brain.. pretty vital organ there.  I would presume that you'd want another opinion about options that may very well be available to you (and your mate) if time allows.  It's worth investigating because based on the size you mentioned here, you have some time.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

ppearl214

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Re: what can I do?
« Reply #14 on: March 04, 2009, 02:59:18 pm »
Elaine,
...radiation is considered an option up to about the 2cm point and no putting pressure on the brainstem. 

*coff*.... avg 3cm, my Pooter! :)  :-*


Elaine, Brian has good points (but don't tell him I said that!)..... I have to ask you this... I have had some small experiences (personal and through family/friends in the UK) in trying to obtain 2nd opinions and dr appts in the UK and via NHS.. and I know the wait for these appts can be difficult .... I'm not as familiar with the Newcastle area, but as RichardS notes... can you get to Sheffield for a follow up/2nd opinion doc?  Would that have to be private pay/set up or can it be done through NHS with no worries?

Docs will preach their comfort levels... surgeons may preach surgery and stray from noting radiation because they may not be all that familiar with the radiation procedures..... radiation docs may preach radiation because that is their forte.......  I know of some neurosurgeons (stateside) that perform both (surgery and radiation) and try to clearly note out for each patient what they would deem as best.....

so, just a thought... your partner's doc may be noting surgery because... that is what he does for a living.... Maybe ask him fully about radiation and see if he deters from it... or, if like RichardS noted, check out GK in Sheffield with the link he provided.

I know.... too much to absorb..... too much to think about... take your time..... and step back if need be.

Hang tough!
Phyl

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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