Author Topic: questions  (Read 5550 times)

MikeSmith

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Re: questions
« Reply #15 on: February 20, 2008, 10:02:20 am »
Tamara,

My name is Mike Smith and I have been where you are.  My AN was considerably larger than yours... (5cm x 5cm) and my prognosis was considerably grim because of its size.  The outlook in my case was shall we say not good....!  The outcome however was considerably different.  NOTHING that they predicted took place!  No eye problems, no speech problems, no walking problems nothing other than being deaf on my right side because it was a Trans Lab approach.

Now I am not telling you this to make light of the predictions or possible outcomes.  I was very fortunate.  I will not say I was lucky because I do not personally believe in Luck.  I was prayed up is what I was!  Now.... I want to be completely honest and open because this site is MONITORED and other people scan and police what is said on here... (read my other posts)  

My situation is not typical especially for the size that I had.  There were many people in the hospital with me that had all sorts of things going on.  From the minor to the major.  However, almost all had tumors that were larger than yours.   As you will read on here you will find that WE ALL HEAL AND REACT DIFFERENTLY !!  This is very true.

In my opinion the first thing that you should do is ASK QUESTIONS!!  I dont care if you think the question is silly or stupid!! ASK!!  Especially ask your doctor... "How many of these things have you PERSONALLY done Doc"?   "How many of these tumors have YOU and YOUR NEUROSURGEON actually performed and what was the outcome"!?

Most doctors that I have run across will answer the question however reluctantly because usually the number is not that high.  So ASK!  ok?   Also ask about the BAHA.

I do not know if you know anything about the BAHA (Bone Anchored Hearing Aid) or not but I am going to assume you do not and say.... Although it will in no way replace the hearing on your deaf side that it will help a great deal.  I have a BAHA and I have learned that even though  I know that all sound is being heard through my left ear, I can tell the difference in the sounds and my brain has learned to tell where things are coming from now.   I would say that I have developed directional hearing to about a 50% mark.  In loud and noisy situations???   NO WAY!!  IT WONT WORK AT ALL!!   It will just amplify all of the noise!  However, in quiet situations ... one on one or in a car while driving or in the house and your husband says "HERE"!! :)  It may help you quite a bit.

ASK QUESTIONS TAMARA!!  Do not be afraid to question those who are wanting to perform the surgery.  All to often we just sit back and let people just dictate to us "How its going to be".  This is YOUR tumor and the procedure is going to be performed on YOU... not anyone else.

I am not very popular on here because I am not afraid to ASK QUESTIONS!!  I am here to HELP people that need help.  I am here to talk to people that actually need to talk to someone that has BEEN THERE... and I am not talking about via email.  I got "policed" by this site because I posted my personal phone number on here so people could call me and hear it from someone that has been through it....  I was told that is violated their safety concerns and was asked not to do it again.  I will comply for now.. however if you click on the little WORLD icon next to my name it will take you to my web site.  On there go to my contact us page and my cell phone number is POSTED !!!  Call me if you need to actaully talk to someone!!

Hope I can be of assistance.

G. Michael Smith
- Mike

lori67

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Re: questions
« Reply #16 on: February 20, 2008, 10:59:56 am »
I may be totally off here, but I thought that the 8th nerve was hearing AND balance...
K

Not sure if anyone answered this yet or not, but the 8th cranial nerve is hearing and balance.  Kind of 2 nerves bundled as one - like an extension cord with the orange insulating stuff around the outside.  I think sometimes the tumor can be more on one side than the other.  In my case, it was on the balance portion of the nerve, which is why I hadn't lost any of my hearing prior to the surgery.  I guess it depends where it actually grows that may affect one sense more than the other.

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.

Charlotte Lady

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Re: questions
« Reply #17 on: February 20, 2008, 12:55:18 pm »
hmmm...maybe that's why my hearing went but I don't have that much balance issue?  Just before surgery though, I had to plan my moves in advance to offset lurching and staggering.  Reminded me of college days when I'd somehow end up so drunk I'd have to have walk with a finger on hte wall so I didn't run into the wall...I'm still not sure how I ended up so drunk though.  I swear I only drank one or two beers <wink wink>.

I agree with Mike about asking your doctor his percentages.  Surgical recurrence in the general population of AN is about 0-2%.  However if a doctor has little or no experience in this surgery and leaves a part behind to recur, those stats don't mean much.  Does that make sense?

Anyway, by now your head must be swimming! 

Donna
1.5 cm AN removed 9/25/07.

Jim Scott

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Re: questions
« Reply #18 on: February 20, 2008, 03:27:44 pm »
Hi again, Tamara:

I just wanted to chime in on the radiation vs surgery discussion, as I had both. 

My AN was far too large (and pressing on my brainstem) to go with radiation as the primary approach so my very AN-experienced neurosurgeon opted for microsurgery to reduce the size of the tumor, cut off it's blood supply and avoid cutting or otherwise disturbing any vital nerves.  I agreed.  The surgery was successful and there were no real complications following.  After a three month 'rest period' I began low-dose, very carefully-aimed radiation treatments ('FSR') administered over 26 days.  These were 'plotted' by a radiation oncologist and my neurosurgeon, working in tandem.  The goal was to destroy the tumor's DNA, stop it's growth and eventually, shrink and ultimately 'kill'' the AN tumor.  It worked.  My last MRI scan showed tumor necrosis and shrinkage.  My neurosurgeon is delighted and so am I.  I feel great.  My equilibrium is near-normal now and I have almost no discernible effects from the AN, surgery or radiation.  I feel blessed.

As I was 63 years old when I was initially diagnosed and treated (in 2006), I believe that age should not be such a big factor for radiation or surgery, assuming general good health going in, of course.  Yes, radiation is not always effective but neither is surgery.  Following surgery, too many AN patients are confidently told: "we got it all", only to face the specter of 'regrowth' and possibly more surgery and/or radiation a few years later.   Granted, this can also occur with radiation but my point is that surgery is not a guarantee of total removal of the AN.  My surgeon now highly recommends the surgery + radiation approach for large AN tumors.  For a 7mm AN, like yours, Tamara, I suspect he would unequivocally recommend radiation.

This is simply my non-physicians opinion and certainly not anything I can debate with any degree of credibility, other than my reflexive distrust of any surgeon who flatly rules out radiation for a tiny AN tumor, based on the patients age.  That seems to be somewhat specious reasoning and smacks of a bias toward radiation on the part of a physician, but of course, I can't prove that.

This being the case, I can only offer my opinion and label it as such, giving the reasons I come to the conclusion I have.  It almost goes without saying that the final decision on treatment is yours - and yours alone - to make.  We simply try to offer more than one perspective, based on our personal experiences and whatever broader knowledge of AN tumors we may possess.  I certainly don't mean to confuse you, Tamara, and I trust that I haven't.   I just wanted to offer you my views and hope they may be of some use to you as you prepare to address the specific treatment you'll choose to eliminate your acoustic neuroma tumor.  The reality remains that whether you choose surgery or radiation, a period of recuperation will be necessary and yes, some complications could occur.  We all hope and pray that doesn't happen to any AN patient but we have to be honest and not pretend here or this site and these forums would be near-useless.  As it is, they are far from that - on many levels - but honesty remains a core tenet of our little group and I very much hope that you'll take comfort in that and know that we may not have all the answers but we don't fake it and we don't pretend but we do care. 

Again, I wish you all the best, Tamara.

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.

Tamara

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Re: questions
« Reply #19 on: February 20, 2008, 08:34:52 pm »
Again, thanks for the information and opinions.  I'm used to being on the "knowing and welcoming" end of discussion groups for my daughter's disorder - this is a change for me.  Anyhow, does anyone know where I can find data on the probability of tumor regrowth after cyberknife over time - say, after 10 years, there's a 10% chance of regrowth, after 20 years, there's a 40% chance, that sort of thing?  I seem to be medically prone to unusual things, so it wouldn't surprise me to be in the minority if I went that route.

I'm sure we'd get through any recuperation issues I might have...I'm just not used to being the one who needs help...after all, I'm the MOM!  But actually, my boys are both wonderfully helpful, and though they can be evil to each other, they both adore their sister.  The boys already cook, clean and do laundry (I want my future daughter-in-laws to not hate me), but I don't want to dump on them too much - they deserve some fun in summer, too.  I've asked my daughter's teacher if maybe one of the school aides could come and work with her 2 hours a day so that she does not regress, and I think that one of them will probably be able to do it.  And the only way I will have surgery is if I have a cleaning service for about 3 weeks.  So, if I go the surgery route, I think that will all be OK.  I had pretty much figured the radiation wasn't an option, but do want to revisit that idea after the replies I've received.  I feel better having my ducks in a row for either possibility.

Again, thanks to all you "groupies"
Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

ppearl214

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Re: questions
« Reply #20 on: February 21, 2008, 06:41:21 am »
Again, thanks for the information and opinions.  I'm used to being on the "knowing and welcoming" end of discussion groups for my daughter's disorder - this is a change for me.  Anyhow, does anyone know where I can find data on the probability of tumor regrowth after cyberknife over time - say, after 10 years, there's a 10% chance of regrowth, after 20 years, there's a 40% chance, that sort of thing?  I seem to be medically prone to unusual things, so it wouldn't surprise me to be in the minority if I went that route.


Hi Tamara,

I found this thread (amongst many here and on the CK Patient Support board).... Mark is 7 yrs post-CK, VERY well versed and respected in his knowledge of AN protocols and such.....there is further info if you do a "search" option here for "AN regrowth" as well as search the Brain Section of the CK board.   Look for Mark's comment in this thread.

http://anausa.org/forum/index.php?topic=4083.msg44131#msg44131

Out of everyone I know, Mark has been the longest time from his initial CK treatment.

As for anyone enduring an AN treatment (regardless of microsurgical or radio-treatment), regrowth can happen regardless.....for me, it's all part of this journey that we come to understand.

Phyl
« Last Edit: February 21, 2008, 06:43:39 am by ppearl214 »
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BDB

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Re: questions
« Reply #21 on: February 24, 2008, 04:37:05 pm »
Hi Tamara,Im' also new here and have a relatively small AN. I decided on Cyberknife which is what my neurosurgeon reccomended,he does many brain surgeries,but feels for small Ans this is the way to go.I decided not to watch and wait as my symptoms progressed rapidly,with hearing going from a slight loss to being almost totally deaf in about 7mos.balance is also bad,and tingling in my face.I originally was going to watch and wait,but felt some form of treatment would be necessary eventually anyway.I am very confident in my doctor,he took the time to explain pros and cons to me,and for myself I feel this is the right decision.I am in Wi. also,and would be happy to give you my neursurgeons name if you'd like a second opinion.This is truly a great site,with people who care,it makes dealing with these things much easier.Best of luck!Bruce
1.2 cm an rt.side CK MAR.08

leapyrtwins

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Re: questions
« Reply #22 on: February 24, 2008, 10:18:42 pm »
Bruce -

congratulations on making your treatment choice - never an easy task.  I had surgery myself, but I know there are many on this forum who have had CK and are very happy with their results.  I'm sure your treatment will go well.

Keep us posted,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mema

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Re: questions
« Reply #23 on: February 25, 2008, 04:40:39 pm »
Talking about the 8th nerve being both balance and hearing.  It seems most of you had said you have had issued with  one or the other.  I have both balance problems and ssd, so I guess my AN was smack in the middle.  I toiled over the options of surgery or radiation.  My AN was small too.  I wish I had waited and watched for awhile, but I think I got so anxious to take care of the little bugger.  I researched thoroughly and traveled 1100 miles, having consultations at 3 teaching hospitals(and Dr's) on the east coast.  You might want to read the posts on the wait and watch thread.  You have time yet.                                                                                                               



                                                                    mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.