Author Topic: Husband in NY newly diagnosed with AN and need help!!  (Read 5639 times)

jcm

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Husband in NY newly diagnosed with AN and need help!!
« on: January 14, 2008, 02:00:39 pm »
Hi,
I am new to this site and so happy to see that it exists.  My husband was just diagnosed last week with AN.  I hope
it is ok for family members to post their concerns or questions.  The size of the AN is 10x5 mm which from reading,
is considered small.  We are in the search process for as much information on the options; surgery, radiosurgery
or wait and see. We would love to have some advice.  At this time, we have obtained one opinion.  The Dr. was
so informative and reassuring that he had plenty of time to wait and see and gather all the information. 
We are still in shock and totally confused.

He has suffered 30% hearing loss in his left ear.  In addition, he has problems with his balance and feels clumsy and lightheaded at times.
For the past two months he has been living with awful noise and confusion.  We would love any information that can be
helpful in the beginning stages of this 1st opinion.  It is overwhelming and discouraging to hear and read that the symptoms might
not get better with surgery or radiosurgery.  If anyone has seen a specialist that performs both types of surgeries,
please let us know. 

We are dazed and confused for the moment and relieved to know we are not alone.





candtlaw

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #1 on: January 14, 2008, 02:24:19 pm »
first, HUGS. I know that it can be tough on the spouse. My husband and I cried for days after my diagnosis. However, upon my first meeting with my neurosurgeon we were much relived to hear that this kind of brain tumor is benign and CAN be treated and I didn't need to run into surgery right away. For that we are forever greatful. This is a great site and there should be a ton of info for you to read through. Also, there is a site I will link below for CK. I am sure there is the same for other treatments however this is just hte one I know most about. The surgeon basically told me that he delt with "orange" sized tumors and sent me on to the next dr. Of course he explained, w and w, conventional surgery and then the radiosurgery. I was greatful to have a CK machine in the city where I live and all the Drs I saw reccomended thiis as my best treatment option. I always finished my first apt up with "If I were your wife, mother, daughter, which would you do?" All 3 said CK............ so here I am. GL to you on your hunt for info and there are PLENTY of kind people ready to help in anyway we can here.......... take care

http://www.cyberknifesupport.org/
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

jerseygirl

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #2 on: January 14, 2008, 02:32:17 pm »
Hi,

Your husband is very lucky to have you at his side! It is awful, of course, to have the symptoms of AN but a small tumor that is not pressing on the brain tissue is much easier to treat than a big one. In a way he is fortunate that his tumor is discovered at a small stage and probably allows for the hearing preservation.

There are a lot of neurosurgeons in NY who can handle your husband's tumor. Here is the list I visited:

Dr Sisti (Columbia Presbyterian) - does both micro- and radio-
Dr. Golfinos (NYU) - does both
Dr. Sen (Roosevelt?) - does micro- only.

Others that I have not visited are Dr. Post (Mount Sinai) and Dr. Stieg (Cornell). There are others, I am sure. If I can give you only  one advice, that is : research, research and research. Know where the tumor is located and how it grows. Visit a number of doctors because each one can explain different things and look at the situation differently. Good luck to you and your husband!

                        Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

hendi51

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #3 on: January 14, 2008, 02:44:03 pm »
JCM, so sorry that you had to find us. It's my husband who has the tumor. It is small, about the same size as your husbands. He has lost 82% of his hearing, has the balance issues and everything he see's is bouncing up and down. It is not a life threatening event but it sure is life changing. We are in the watch and wait mode right now. We will see the neurosurgeon Feb. 25. I know this is scary but hopefully you will gather all the information and make the decision that is right for you. Lots of luck to you.
My husband had translab 3/15/2011 for 1.5 cm x 1.5 cm left side AN at
Methodist University Hospital in
Memphis, Tn

Sue

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #4 on: January 14, 2008, 06:08:30 pm »
Hi JCM, and welcome.

First of all, no, you are not alone with this.  Second of all, any and everybody is welcome to post on here that have concerns with this thing that we all have in common.  And thirdly, almost everyone who post here have a million questions, are scared or confused, and don't know which way to turn.  Mostly our major advice to you is to do your homework, find a really good doctor who knows what he/she is talking about, preferably one who is very experienced with AN's, and to find the treatment that best fits with what YOU (that would be your husband!) want, not necessarily what your doctor wants.  For some people surgery is the only option or the one that they prefer.   For most people with a smaller AN, you have the option of radio-surgery, which is what I had.  Or your husband might be advised and feel comfortable with watching and waiting to see how fast the AN is growing.  He would have another MRI in a year or so, and then go from there.  Some people are on W/W for years. Know that many people have their treatment of choice and go on with their lives, some with little impact.  They post here a few times, and then off they go.  I can relate to the light headed feeling!  You kinda feel like your in a fog.  That's the vestibular nerve not being particularly happy with it's situation. Most of the time, that usually resolves itself and goes away. The nerve on the other side will compensate in the balance department and that takes a little time.

It is hard, I think, to try to take control of a medical situation which most people don't know anything about previous to their diagnosis.  I know I'd never heard of it.  Most who come on here don't.  But, Acoustic Neuroma, although regarded as "rare", is one of the most studied of the "brain tumors".  Technically it is a skull based tumor, because it does not grow "in the brain", but it is connected to all those nerves that travel to the brain...so it often is called a brain tumor.  There is a lot of information out on the Internet about this condition/disease and lots of information right here on the ANA site.  And there are a lot of good folks on here who will be more than happy to talk with you on this site, or privately, if you desire.

Don't despair.  But I certainly know how you both are feeling.  I sort of pictured those Roadrunner cartoons.  You know when he looks both ways down that railroad track and nothing is coming for miles and miles and so he steps out to cross the track and BOOM, he gets hit with a speeding train.  That's how I felt.  Minding my own business, nothing coming that I could see and then BOOM!. :o  Sort of sets you back on your heels. 

Take care and best of luck in your husband's treatment and eventual recovery,

Sue in Vancouver
« Last Edit: January 14, 2008, 06:13:00 pm by Sue »
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

jcm

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #5 on: January 14, 2008, 10:54:29 pm »
Thanks to those who responded to my first posting.  We are so grateful to have found this site.  It has is a wealth of
information and kind people.  From reading certain forums today, we had never heard about Cyber Knife surgery. 
I wonder why the first Doctor did not mention this as an option.  We will research and find out more information.

If anyone has used CK as an option, please share your experiences with us.  We do live close to Connecticut, and
wonder if there are specialists that are well known for the GK or CK surgeries? 

The information journey continues......






ppearl214

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #6 on: January 15, 2008, 06:51:03 am »
Hi jcm and welcome. Glad you are finding the site helpful.... everyone here certainly understands and we help as best as we can.

In regards to your question, I had my 1 cm AN treated by Cyberknife at Beth Israel Hosp in Boston (currently, the only one in New England although Brigham/Woman's in Boston does have a purchase req in place for a Cyberknife).  GK is mostly done down in Providence by Dr. Noren, who is also top notch.  GK is also offered at Tufts University in Boston however, I do not know much about their GK backround in treating AN's.

If you do decide to check radiation treatment options, please see the "Radiosurgery/Radiation" dicussion forum here... as well as "Archives". There is a wealth of info available. Using the "Search" option will be helpful as well.

Again, welcome to you... and please hang in there!

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

CarrollMoore

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #7 on: January 15, 2008, 07:45:22 am »
Good morning,
With films in hand I am off to the Neurotologist for a review.  Will post results upon my return.  I have researched other possible causes of symptoms (given that the two spots that appear to be tumors on films) are something else.  My digging turned up MS as the only other possibility and I'm not sure if that would be a blessing or not.  Will know something soon.  It has been a long wait since Dec 20, 2007.
CVarroll

candtlaw

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Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

fbarbera

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #9 on: January 15, 2008, 12:41:30 pm »
Dear jcm,

I underwent CK treatment for much larger AN (about 2.5 cm) in August 2007.  Although it is becoming an increasingly common option, my sense is CK is still somewhat novel to many doctors, which probably is why you didn't hear about it in your initial consults.  It took a number of consultations and independent investigation for me to finally get comfortable with the decision to go with CK.  I had different doctors recommending Gamma Knife, Cyberknife and Surgery, so my process involved a serious consideration of all options.  I think any one of the options would have been reasonable for my condition and I feel fortunate to have had the options.  The good news is that your husband will have the full range of options available to him as well.   

For me, the main factors leading to my CK decision were hearing preservation (I had lost just a little bit of hearing in my tumor side ear and so far have managed to preserve it since treatment), avoiding facial nerve damage (a meaningful risk in my case due to the size of my tumor), a general aversion to the idea of brain surgery, and a general fear that post-surgical symptoms (which seem fairly unpredictable) were more likely to hurt my quality of life.   I am still just a few months out of treatment and am still experiencing post-treatment symptoms, so I can't speak much to long term outcomes.  But I am happy to discuss my decision-making process with you further, the consultations I had, etc., if you think that will help.

I know it is a crazy time but trust me, these first few weeks are the worst.  Once you get a handle on treatment, everything will settle down and soon your life will be on track to normalcy.

Best of luck and please feel free to be in touch.

Sincerely,

Francesco







 

sgerrard

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #10 on: January 15, 2008, 09:44:15 pm »
CK? For a 1 cm-ish AN, on the left side? With 30-50% hearing loss? We've got that.  ;)

Hi, jcm. I was diagnosed last summer, and decided to act because the hearing seemed to be getting worse. The best chance for preserving it is when you still have a good amount left. Unfortunately, none of the treatments available will restore hearing that is lost before treatment.

As Sue said, the balance issues often do work out, with the good side taking over. It is worth noting that surgery usually removes balance function on the affected side, which can make adjusting easier, while radiation does not do that. I haven't had balance issues fortunately, knock on wood.

I picked CK for much the same reasons as Francesco. A good chance at hearing preservation, little chance of facial nerve damage, and none of the trauma of surgery. GK is much the same, but CK is a refinement of  the method, making it just as good only better. If I had gone with surgery, I think I would have given up the hearing and done a trans-lab, it seems like the safest approach to me.

At 1 cm, you can take some time to investigate. Visit the cyberknife support site, candtlaw posted the link. You can post questions to some CK doctors there, and possibly get an evaluation of your MRI from one them. If you are looking at surgery, there are several good places to investigate. Watch and wait is also an option, although if symptoms are showing and getting worse, my inclination would be to put a stop to it.

Best to both of you,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

candtlaw

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #11 on: January 16, 2008, 09:59:22 am »
I must ditto Steve re reasons for CK over the conventional surgeries.... also the recoup time was not a good option for me with 3 young kids..... CK over gamma, well frankly the headframe scared me and CK unit was 15min from home..... please do let us know how you both are doing.... oh yes, had my first audiogram yesterday since ck. No hearing loss b4 ck and just a teeny tiny little loss on the AN side after. Its not enough to even notice ;) I am quite pleased with my decision for ck......
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

jtd71465

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #12 on: January 16, 2008, 10:47:25 am »
I had surgery with the team from NYU (Roland and Golfinos) on January 10, 2007(3.5 hour surgery).  As of today I am 100% back to pre-surgery standards minus 60% of my hearing in the AN ear.  If you have any questions please feel free to contact me directly.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

jcm

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #13 on: January 19, 2008, 09:16:03 am »
Phyl,

Thanks for the reply to my post, I am considering the CK treatment option for my self and was wondering if you had experienced any minor balance issues or hearing loss prior to CK. I am concered about long term balance issues should I opt for the CK instead of the Translab surgical approach that one surgeon recommended.

Thanks

JCM
John

ppearl214

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Re: Husband in NY newly diagnosed with AN and need help!!
« Reply #14 on: January 21, 2008, 09:57:27 am »
Phyl,

Thanks for the reply to my post, I am considering the CK treatment option for my self and was wondering if you had experienced any minor balance issues or hearing loss prior to CK. I am concered about long term balance issues should I opt for the CK instead of the Translab surgical approach that one surgeon recommended.

Thanks

JCM
John

Hi John,

glad to help.  I have balance issues due to another medical situation that I have, but from an AN and CK standpoint, overall, my balance does not seem to be affected much.  At times, at night, slight "wonky head" (as we like to call it around here) occurs in darkness (ie: walking my dog outside at night, etc). but many here, regardless of treatment options, tend to run into it.  As for my hearing, I had over 90% serviceable hearing at the time of my Ck.  It slightly diminished between 1-6 mos post CK due to edema (swelling, which the growth tends to do just after treatment) but then it restored back to what it was at the time of treatment (when the swelling stopped), so as of today (now 22 mos post treatment), I still have all my hearing that I did at the time of CK.  For anyone enduring radio-treatment, we have seen some lose some hearing due to edema and pressure on the hearing nerve... and we have seen some have it come back post-treatment... so as you can see, "individual results may vary". 

Based on what I have heard, hearing retention and balance are more likely to be better post radio-treatment vs. microsurgical (ie: Translab, etc) but I do not have actual stats. May be worth researching further and read here to see what others have to say.

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