Author Topic: Help  (Read 10588 times)

cwilson

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Help
« on: July 11, 2007, 07:20:56 am »
I have a 2mm acoustic neuroma.  I'm going to meet my Doctor on July 26.  I don't know what type of treatment I want to have.  Can anyone tell me about the surgical treatment.  Have surgical treatment been improve over time?  I would love to have your information.  Can someone tell me about GK treatment and long term effects. I thank you in advance for your help.

leapyrtwins

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Re: Help
« Reply #1 on: July 11, 2007, 11:35:49 am »
Hi, and welcome.

I had retrosigmoid surgery for a 1.5 cm AN on 5/31/07; my other option was GK.  I chose surgery because I wanted to have the AN removed; I didn't want to wait to see if the radiation stopped the growth nor did I want to deal with lots of followup MRI's.  I also wanted to know what side effects I would encounter up front and I'd heard that side effects from the GK can take anywhere from 6-18 months to surface.  That said, my neurotologist stressed that everyone is different, has different objectives, responds differently, and that surgery vs radiation is a personal choice in some cases.  He feels that if you have a choice, the choice is best left up to you.  So he told me about each procedure, side-effects, etc.  In the end, I just wanted the AN gone, so I chose surgery.

I have no idea if surgerical procedures have improved over time or not, but I do know that the most important thing is to make sure your doctor has done numerous AN surgeries - you definitely want someone with experience.  In my opinion, you also want someone who can answer your questions, put your mind at ease, relate to what you're going through, and is confident he or she can perform the procedure.

The ANA has some excellent literature on ANs that details the available options.  I found it very helpful and very informative.  It reiterated a lot of what my doctor told me, but it also described things in basic (non-technical) language that helped to clarify what my doctor said.  If you haven't read the literature yet, I encourage you to do so.

I think I made the right choice and I am fortunate to have minimal side effects.  I had some facial nerve damage for 1 - 2 days post op, but it was rectified with a dose of steroids.  My surgery was 7 1/2 hours and I did experience nausea, dizziness, double-vision, and balance issues, but am happy to say they have all cleared up.  I spent 5 nights in the hospital;  the neurosurgeon would have let me go after 4, but the neurotologist and I felt I needed another night.  Today, my biggest issues are metallic taste in mouth, dryness in my left eye (AN was on left) and tiredness (which I hear is normal since I'm still in recovery).  I returned to work part time after 2 1/2 weeks (desk job) and full time after 5 weeks.

To me the biggest shock of the surgery was the recovery process; but it's nothing you can't get through.  My neurotologist did his best to tell me what it would be like, but I thought I knew better.  I had never been hospitalized, except for the birth of my twins (no C-section) and I went home the next day.  I had never had major surgery before (only outpatient).  So, waking up in the ICU was a bigger deal than I had expected.  But, I got better each day I was in the hospital, and have continued to get better every day since then.  My scar is almost covered by my hair, which I wear short, and I'm looking forward to a BAHA implant early next year.  Although one of our goals was to save the hearing in my left ear, it unfortunately didn't happen.  However, I consider the surgery a big success and am glad I made the choice I did.  I have to do a followup MRI in 1 year, but I'm confident it won't show anything.

I can't speak for the GK, but if you do chose surgery, make sure you have family or friends to help you during your recovery.  I am a single parent, with two 11-year olds, and having my sister and parents help out was a huge asset.  For a while you can't lift heavy things, bend at the waist, drive a car, etc., plus you will be very tired.  Without the help of others, I could have never done this.

Good luck.  I'm sure whatever choice you make it will be right for you.

 
 

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

Boppie

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Re: Help
« Reply #2 on: July 11, 2007, 01:54:08 pm »
2 mm (millimeters) That is extremely small. 

ppearl214

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Re: Help
« Reply #3 on: July 11, 2007, 02:34:23 pm »
Hi and welcome.  I have to also note as Boppie.... 2mm AN is, indeed, very small.  Do you have a copy of the written MRI report that shows the exact dimensions of the growth?  That would be most helpful.

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

Mark

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Re: Help
« Reply #4 on: July 11, 2007, 04:32:10 pm »
I would very much concur with Bruce's thoughts on MRI follow ups following surgery. Stanford where I was treated has the exact same follow up protocols for both options for the first 4 years and I think most experienced AN docs would recommend something similar. The most favorable studies show surgery with a 5% regrowth rate and some show it as high as 10%. Over the past few years on this site there have been a number of folks who were told it was all removed and received the very unpleasant news that it wasn't.

The odds are that everything is fine and it's gone, but with a 5-10% possibility it might come back, it seems to me that it is just as prudent for a surgery patient to get periodic follow up MRIs as it is for a radiosurgery patient.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Betsy

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Re: Help
« Reply #5 on: July 11, 2007, 07:58:25 pm »
Hello,

I'm with Phyl and Boppie...2mm is very small (now that I have the metric system figured out).  If that measurement is right, you're fortunate to be finding out about it now, before it gets so big that the only option is surgery.  Are you experiencing symptoms or was this diagnosed when your doctor was looking for something else? 

Betsy
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

leapyrtwins

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Re: Help
« Reply #6 on: July 11, 2007, 09:40:09 pm »
Brucifer and Mark, thanks for the great advice.  Guess I didn't listen closely enough to the doctor's speech.  I heard him say that with GK, I'd have MRI's every 6 months for the 1st 5 years and every 12 months for the 2nd 5 years.  I was under the impression that after surgery and my 1st annual MRI, that I would be off the hook.   Thanks for setting me straight.  You guys seem to be very experienced at this stuff; I'm still a newbie :)
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

Jim Scott

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Re: Help
« Reply #7 on: July 13, 2007, 03:47:24 pm »
I can only suggest that the poster cwilson do more research before deciding on what surgical approach to take, as this is a highly personal decision.  Although surgeons can offer informed opinions on which approach is 'best', I really can't. 

As for MRIs: I had two pre-op; the original scan (May, 2006) that 'discovered' my AN and another just prior to surgery a month later.  I then had one in the hospital immediately following my surgery, another three months later for evaluation prior to my FSR treatments.  My neurosurgeon was skeptical about a follow-up MRI that I had in April.  He thought the tumor had grown.  I politely disagreed, as my symptoms were gone and I whizzed through all the neurological tests he gave me.  Respecting my doctors wishes, I underwent yet another MRI in June, my 6th in 13 months.  That one clearly showed tumor shrinkage and definite necrosis, so all is well.  My neurosurgeon wants me to have another MRI in December or January, then one per year, probably 'forever'.  An hour a year?  Hey, I can live with that.   :)

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.

SharonN

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Re: Help
« Reply #8 on: July 17, 2007, 07:45:03 pm »
I'm SO glad I was able to go to the symposium in Philadelphia, as so many of my questions regarding options were answered.  First of all, it seemed most of the neurosurgeons agreed that up to 2 mm you could usually (butnot always, depending on symptoms and location) do watch and wait, and that under 2 mm was the optimum for preserving hearing. 

After hearing about the cyberknife, I was very intrigued.  It seems to combine the benefits of FSR and the Gamma Knife.  But since mine is 1.4 x 1.3 x 1.1 and I still have servicable hearing,  I still have the luxury of waiting--who knows, something even better might be developed (or I might die of something else!)

cwilson

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Re: Help
« Reply #9 on: July 25, 2007, 10:51:11 pm »
I want to thank everyone for the information that was giving to me. I will be going to the doctor on Thursday. I have not been feeling sick or anything. I still have the ringing in my hear, but that is it. I will know more when I see the doctor. Once again thank you for your information. I really need this board.

CWilson

Captain Deb

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Re: Help
« Reply #10 on: July 26, 2007, 12:28:05 pm »
CWilson--
Be sure and update us on the size--2mm is the size of a tiny seed bead and probably wouldn't be found by symptomatic diagnosis. 2 cm is another story.

Best of luck, be well and sail on,

Capt Deb
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Chronic post-op headaches
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Sam Rush

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Re: Help
« Reply #11 on: July 26, 2007, 03:49:32 pm »
I think Mark is incorrect.

In good hands, recurrance after surgery is .3%(point 3)  for small or medium sized tumors.(HEI data) It is even less with trans-lab approach.  However, if it is YOUR recurrance, then it is 100% !!! 
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Windsong

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Re: Help
« Reply #12 on: July 26, 2007, 06:12:55 pm »
Hi Chris, :)

Welcome to a good site for all kinds of information re acoustic neuromas.... sorry you had to join us but I hope your appt. went well today (it's thursday)   and that you have some answers  from that appt. to the questions you posed  here..... as you can see, lots of folks have posted and it's good to have such support and sharing of experience   and garnered knowledge.......Your An is small I see so  I figure you will be able to have  time for sure to find out what you want to know and time to make a decision as to what kind of treatment you will have.

I am kind of curious you know, as to how your An was discovered in the first place? Your size is one of the smallest I have heard about and i saw that you said the only symptom you have is tinnitus ( and, yeah, that can be a real nuisance as  some of us know.)  It might be helpful for others here to know what it was that then prompted your doc to test for an An in the first place? ( I assume you had an mri) and whether or not you had contrast too for example, to highlight the An if it should  appear? Since mri's can vary from one machine to another etc. from what I have read around 2 mm, I am really interested in how you were diagnosed. Would that we all had early diagnosis.... many get it later when the An is bigger...good that you know early.......

Thanks so much for any light you could shed on this as I see a number here are wondering too.....

All the best, take care,
windsong


Sam Rush

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Re: Help
« Reply #13 on: July 26, 2007, 11:36:39 pm »
Bruce and Mark.

 Your stats may be accurate nationwide, but as I said, in good hands, eg: Stanford, HEI, other MAJOR centers, where hundreds are done yearly, the stats are much lower.
However , in my medical practice, I have a 110% recurrance rate!!!      (just kidding!!)
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Brendalu

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Re: Help
« Reply #14 on: July 28, 2007, 08:54:27 am »
Bruce,
Thanks for the link.  Explains a lot of things my surgeons did not.  I'm glad we have very smart and knowledgeable people on this forum.  Thanks for sharing.
Brendalu
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT