Author Topic: Having 2nd thoughts about my decision....  (Read 9515 times)

susierg

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Having 2nd thoughts about my decision....
« on: June 22, 2012, 07:01:58 am »
After 5 yrs of w&w my tiny AN has begun to grow (now 6mm).  My docs recommend surgery (middle fossa).  I'm scheduled for July 24th, but after reading some of the posts here, I'm wondering if surgery is the right choice for me.  My hearing is 100% and am having little to no other symptoms.  My docs say that if I have radiation and the tumor begins to grow again, that the surgery will be much more difficult.  I had my mind made up....but the thought of having my head cut open and the long recovery period...now I'm not sure.  With GK, is there good results with hearing preservation? Also, what risks for facial paralysis?  I know everyone here says "go with your gut"...but my gut can't make up its mind and I only have a few weeks left before my shceduled sugery.  Any advice, info, ect would be greatly appreciated.
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

FlyersFan68

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Re: Having 2nd thoughts about my decision....
« Reply #1 on: June 22, 2012, 12:58:38 pm »
The sooner you address the better the reults especially with mid-fossa and hearing preservation. If you waited until it grew to 9mm you may not get the same results. Same goes for radiation. You can still lose hearing at any time doing nothing at all. Some small tumors can create big problems (vertigo, hearing loss). Just like mid-fossa, radiation has higher success rates on the smaller tumors. You already have years of wait and watch experience. You might want to postpone and further think this through (surgery, medical team, cyberknife, gammaknife). Sooner or later you will definitely need surgery or radiation but until you can comfortably figure out which option suits you best then I would continue waiting and watching.

leapyrtwins

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Re: Having 2nd thoughts about my decision....
« Reply #2 on: June 22, 2012, 02:27:04 pm »
IMO, you shouldn't have any type of treatment unless you are 100% sure you want to have it.  You should also be 100% sure of the doctor(s) you choose to treat you.

This is not something you want to second guess yourself on - or look back at with regrets.

No one can tell you what is right for you - it's a decision you have to make yourself.  Some people have no treatment choice available to them and then it's a no-brainer (no pun intended) but unless yours is a clear cut case of having to have one treatment over another you should take the time to decide what is right for you.

The majority of ANs are very slow growing, so you have time to figure this out.  If you ultimately decide you want to have surgery, you can always reschedule it.

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

It is what it is

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Re: Having 2nd thoughts about my decision....
« Reply #3 on: July 10, 2012, 07:47:07 pm »
Hi,  all I can offer is the decision I made for myself to have surgery after I began to have more symptoms soon after diagnosis. All the options have pros and cons but this is the decision I felt was right for me.  I wish you peace in your ultimate decision.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

jaylogs

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Re: Having 2nd thoughts about my decision....
« Reply #4 on: July 11, 2012, 12:00:08 am »
Jan echoed my thoughts exactly...you should never go into something unless if feels right. You even made that comment yourself, to an extent.  So if you need to step back for a bit, and weigh your options that's totally ok.  You seem to be in a good position right now to do that so why not?  Again, no one can tell you what you need to do, it's you who does! :)  Let us know what happens, ok? Take care!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Tumbleweed

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Re: Having 2nd thoughts about my decision....
« Reply #5 on: July 11, 2012, 01:09:27 am »
Susie, I agree with what everyone else before me has said. This is a major decision with lifelong consequences, so you want to be really certain you're making the best choice for you, before you seek any type of treatment.

In answer to your questions, radiation -- whether GK or CK -- almost always offers far lower risk of facial paralysis compared to surgical resection. For a small tumor such as yours, however, and with the good hearing you still have, it's probably not so clear-cut whether radiation or surgery offers you the best chance of hearing preservation. In cases where the tumor is medium to large size and the hearing nerve is already very weak (not your situation), radiation generally offers a better chance of hearing preservation compared to microsurgery. (The result of an ABR test -- which indicates the electrical continuity of the hearing nerve -- is regarded as a good indicator as to whether or not a significantly damaged hearing nerve can withstand the further trauma of surgical resection or not; you might ask your surgeon for an ABR test if you haven't had one performed yet, to confirm your hearing nerve is still in robust condition.) Between GK and CK, CK offers slightly higher odds of hearing preservation (generally 75% for CK vs 65% for GK, but this is averaged across all tumor sizes and locations; for small tumors, the odds can be significantly better.)

There are other factors to consider. Perhaps most significantly, radiation poses no risk of CSF (cerebral spinal fluid) leakage and generally has a much shorter recovery period. There is generally much lower risk of chronic headaches following radiation, although middle-fossa approach poses a lower risk than retrosigmoid. Headaches after surgery are generally thought to be caused by fine bone dust getting inside the cranium when the skull is cut open to gain access to the tumor. Retrosigmoid approach carries about a 15% risk of chronic headaches post-surgery. If I remember correctly, middle-fossa -- which your surgeon is planning for you -- poses much lower risk of chronic headaches. If your surgeon has not gone over all these risks with you, I recommend you ask him/her to quantify each risk in percentage terms so you know whether you're exposing yourself to higher risk than you assumed and are willing to take on. Have them put a number on it (e.g., 15%) so you know exactly what you're getting yourself into. There's no "do over."

I always groan when I hear a surgeon say surgery would be more difficult after radiation, should the tumor grow again. The best surgeons emphatically state that this is not the case in expert hands. Personally, I would worry about any doctor that makes that statement (especially because the chance of regrowth is statistically low -- and about equal -- for both surgery and radiation).

But the main deciding factor, as others have noted, is what your gut is telling you. Especially because your tumor is so small, there is no reason to rush into having a treatment you're not completely certain is the best option for you. If it were me, I would postpone the procedure until I had more clarity and resolve. And if you haven't received a second (and possibly third) opinion, this is also something you should strongly consider before moving forward.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: Having 2nd thoughts about my decision....
« Reply #6 on: July 11, 2012, 04:45:07 am »
Agree with Jan (don't tell her I said that!) and Jaylogs and others.....

For me.... bottom line.... your gut will steer you in the right direction.  Many here (myself included) went with the gut and never questioned our decision. The decision-making process is one of the most difficult part of this journey... and typically, once the decision is made... the monkey usually comes off our backs..... it does sound like the monkey is still on your back, but not for me to say that either. 

The gut will steer you in the right direction. Never 2nd question the guts decision.... its usually the right one.... so... what does your gut tell you?  You don't have to answer it here... only to yourself.

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

JWW

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Re: Having 2nd thoughts about my decision....
« Reply #7 on: July 11, 2012, 06:25:21 am »
Susie, I too live near the Texas Medical Center. I have what is considered a small AN on the L. side
(1 cm x 6mm x?), 96% to 100% hearing. I was diagnosed on March 7, 2012 by a neurosurgeon who found my AN with a "tunning fork" and put my mild dizzines, mild balance issues, some hearing loss at times due to allergies ALL together!!! I went to see this neurosurgeon with a totally unrelated issue. The AN was confirmed with the MRI w/without contrast on March 19th.

I have consulted with several doctors here in the Texas Medical Center and decided on GK the week of July the 23rd. I am in the work up phase right now. I saw Dr. Robert A. Williamsom, assistant professor of Otology, Neurotology and Skull Based surgery (BCM/Neurosensory Center of Houston) this passed Monday. He works with Dr. Bin S. Teh, professor & Vice Chair at The Methodist Hospital.. the staff radiation oncologist. Together they work as a team to plan and map out the GK (SRS).

I learn something new each time I consult with one of these doctors. I learned from Dr. Williamsom that I had two things going for me right now, 1. I still have some fluid left in my L. AN ear (IAC) which will help cushion my nerves during the GK procedure! Once the AN starts to grow out of the IAC, no cushion. 2. My AN is considered small. 3. I am 64, 65 in Sept., radiation is the way to go for me.

Dr. Williamson said, if I was in my 20, 30, or 40's he might push for surgery because no one really knows in a younger person what the side effects of radiation woud be 30-40 years down the road.

Hope this is helpful. I too, looked at M.D. Anderson but went with Methodist/BCM.
PM if you like.

JW

btw: Every doctor I have seen is impressed that the neurosurgeon I saw diagnosed my AN with a "tunning fork!!!"

pjb

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Re: Having 2nd thoughts about my decision....
« Reply #8 on: July 11, 2012, 06:55:02 am »
I should have went with my gut and run and didn't so I chose the wrong path and usually do.. I know what to always do but I just seem to do the opposite a battle I have been having with myself for the longest time ... You still have time it is a small AN if you are not 100% sure you still have the option to continue with your research and the several choices you have to make a decision that you feel totally comfortable with ...

Best Wishes,
« Last Edit: July 11, 2012, 06:59:49 am by pjb »
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

susierg

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Re: Having 2nd thoughts about my decision....
« Reply #9 on: July 11, 2012, 07:26:14 am »
Thanks everyone for your comments, advice, etc.  I meet with my Neurosurgeon this friday and am scheduled for ABR test that day as well.  I will also meet with the Cardiologist at MDA, as I had open heart surgery last year.  After a couple of weeks of researching and reading posts, I'm 99% sure that surgery is what I want.  I'm hoping after Friday, that will change to 100%.  I have over the past 5 years, seen other specialist in Houston....but feel more comfortable with my docs at MDA.  As the day grows nearer, I'm getting nervous....but trust that I have made the right decision.  I have one other Pre-op day scheduled for 7/23 (the day before) for another MRI and something called "Fudicial".  Does anyone know what Fudicial is?  I plan to ask my surgeons this Friday (along with a long list of other questions), but have been curious ever since I received my appointment schedule.
Again...thank you all for responding and will let ya'll know how it goes.

Susie
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

It is what it is

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Re: Having 2nd thoughts about my decision....
« Reply #10 on: July 11, 2012, 11:31:12 am »
99% is a good place to be at this point. I respect how thoroughly you are exploring your options.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Jim Scott

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Re: Having 2nd thoughts about my decision....
« Reply #11 on: July 11, 2012, 11:47:20 am »
Hi, Susie ~

Your pre-op jitters and having 'second thoughts' are absolutely normal.  You're facing a serious surgery and there are risks involved so the outcome cannot be accurately predicted, which tends to induce nervousness in normal human beings.  However, this is a very necessary surgery and it appears as if you've managed to get re-focused on that and are moving ahead with confidence, which is the only way to go.  Of course, I join many others here in offering you my thoughts and prayers for a totally successful surgical outcome.

"Fiducial" may refer to the marking of the exact area where the MRI shows your AN is located to help guide the surgeon.  Of course, I'm not a doctor and could be wrong.  You'll find out on Friday.  :)

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.

Tumbleweed

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Re: Having 2nd thoughts about my decision....
« Reply #12 on: July 11, 2012, 02:11:03 pm »
Oh, okay. 99% certainty that you've chosen the right treatment, that's about as good as you can expect. I had doubts right up til the point they put me on the table. Like Jim said, that's normal. I felt like CK was my best option, but I didn't like any of my options.

If you're 99% okay with your decision, you've made the right choice.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

It is what it is

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Re: Having 2nd thoughts about my decision....
« Reply #13 on: July 11, 2012, 03:56:30 pm »
I agree with Jim and TW. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

leapyrtwins

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Re: Having 2nd thoughts about my decision....
« Reply #14 on: July 13, 2012, 09:05:29 pm »
99% is good.

I was 100% sure of my decision.  Went into surgery cool as a cucumber.  No hesitation or second guessing myself.

Maybe I'm unique in this.

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