Author Topic: Second opinions can be confusing...  (Read 9562 times)

Ellid

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Second opinions can be confusing...
« on: January 16, 2007, 12:18:06 pm »
I saw Dr. Mason at Baystate Medical Center in Springfield today.  He's young, has a nice personality, and like Dr. McKenna, he was pleased that I'd come here and done some research.  He also didn't seem to be jealous of Dr. McKenna and said that Mass Eye and Ear was an excellent resource (I had told him I was seeing Dr. McKenna next week in case he was upset by the idea, but he seemed quite pleased that I was seeing more than one doctor).

Here's the rub...he thinks my tumor is slightly larger than Dr. McKenna did, and that watch-and-wait isn't a great idea.  He seemed more in favor of radiation than Dr. McKenna and offered to refer me to Dr. Loeffler at Mass General, who works primarily with the proton beam these days.  He also operates using the translabyrinthine approach rather than retrosigmoid, which is what Dr. McKenna would use.  He showed me a view on MRI that made it look like the tumor was absolutely huge, which I hadn't noticed when I looked at the MRI myself...also, I'm a little concerned about him thinking that my tumor was approximately 2 cm when it's actually 1.6 x 1.4 x 1.3.

I definitely would prefer him to be my regular ENT in Springfield, especially if I end up getting a BAHA or other assistive device.  However, I'm now torn - it would be nice to have a local doctor for this, but Dr. McKenna's examination was much more thorough and he seemed a bit more willing to listen to me - Dr. Mason didn't give me as much time to speak, although he was neither rude nor abrupt.


So - I'm still inclined to go with Dr. McKenna...but when it comes to surgery, what are the pros and cons of translabyrinthine v. retrosigmoid?  I'll likely lose the hearing on the right regardless but am curious....

Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

ppearl214

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Re: Second opinions can be confusing...
« Reply #1 on: January 16, 2007, 12:38:09 pm »
MEEI/MGH...well, just can't say enough about their micro-surgical team over there. As you may know, there are many on this website that have first hand experience/accounts with the MGH/McKenna team....I have met (I think) 4 of them in person and to see each one, to see how marvelous they are doing... and to look at them and say "you had brain surgery?" by not even being able to tell that anything was wrong.... well..... :)

I cannot offer anything from a micro-surgical standpoint/experience, but those here that have been treated there and have had fantastic outcomes... well, I'll let them share! :)

Hang in there and keep an eye open for the next brunch... hopefully, March/April back at Maxwell's in Worcester. Would love to have you come join us!

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

Ellid

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Re: Second opinions can be confusing...
« Reply #2 on: January 16, 2007, 02:20:43 pm »
Hi Lisa...

Don't you love it when you get mixed medical opinions?  lol! At this point, it just comes down to you weighing the risks, the reputations, , your impressions, and then going with your gut feeling. I would opt for waiting until I at least got a second MRI to compare with the first, and then going with radiotherapy if a more active form of treatment was needed. But, that's just me. You might prefer the surgery route. Nothing is wrong with either choice. The important thing is that you choose. What a tough decision, I know. You have done the research and questioned the experts, so I am confident that you will make the choice that is best for you. Whatever you decide, I hope you have a great outcome. Good luck!

Bruce

Thanks, Bruce!  I have a second MRI scheduled for early March and will be deciding then.  The major thing I'm concerned about is the difference between the translabyrinthine and retrosigmoid approaches; I know I'm probably going to lose my hearing on the right no matter what, but the idea of using an approach that will instantly deafen me because that's how the doctor was trained bugs me.  I'm still torn about about radiation versus surgery - I'm strongly considering getting a referral to Dr. Loeffler at Mass General just to see what he has to say.


Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

Jim Scott

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Re: Second opinions can be confusing...
« Reply #3 on: January 16, 2007, 03:18:41 pm »
Lisa:

As is often the case, I have to concur with Bruce's ('brucifer') comments to you - but I also have to mention that, with microsurgery, the retrosigmoid approach does have a better history of 'preserving' hearing when used on small-to-medium AN tumors.  My hearing nerve had already been pretty effectively compromised by the long-term presence of the AN tumor resting on it.  However, my neurosurgeon used the retrosigmoid surgrical approach approach only because he believed it gave him the best access to the tumor.  He made it clear that I was highly unlikely to regain any hearing that ear.  He was correct. Yet your case is different and you probably have a much better chance to preserve what hearing you have in on the AN-affected side.  No surgical procedure, even radiation, can guarantee a certain precise result, as you know.  We can only make a decision based on valid statistics, the historical (medical) record and a host of other, less tangible ifactors that eventually drive our final decision on treatment and doctors.

I wish you well as continue this 'journey'.

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.

Ellid

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Re: Second opinions can be confusing...
« Reply #4 on: January 16, 2007, 03:21:05 pm »
Lisa:

As is often the case, I have to concur with Bruce's ('brucifer') comments to you - but I also have to mention that, with microsurgery, the retrosigmoid approach does have a better history of 'preserving' hearing when used on small-to-medium AN tumors.  My hearing nerve had already been pretty effectively compromised by the long-term presence of the AN tumor resting on it.  However, my neurosurgeon used the retrosigmoid surgrical approach approach only because he believed it gave him the best access to the tumor.  He made it clear that I was highly unlikely to regain any hearing that ear.  He was correct. Yet your case is different and you probably have a much better chance to preserve what hearing you have in on the AN-affected side.  No surgical procedure, even radiation, can guarantee a certain precise result, as you know.  We can only make a decision based on valid statistics, the historical (medical) record and a host of other, less tangible ifactors that eventually drive our final decision on treatment and doctors.

I wish you well as continue this 'journey'.

Jim

That's right, you're the one who went to St. Raphael's...does Dr. Goodrich take insurance?  At this point I'm tempted to get a third opinion, and I recall you being very satisfied with Dr. Goodrich.  My main concern is that I'm in Massachusetts and he's in Connecticut...

Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

jcinma

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Re: Second opinions can be confusing...
« Reply #5 on: January 16, 2007, 06:29:51 pm »
Lisa,
Please ask Dr. Mason how many procedures he does each year and who his "team" is comprised of.  When I met with him in 2004 he was not doing very many and he also stated at the time he operated alone.  He was ready to operate on me but I chose to go to Mass General.
Jane
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

GM

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Re: Second opinions can be confusing...
« Reply #6 on: January 16, 2007, 07:27:32 pm »
Lisa,

Have you considered radiation?  Your tumor is a perfect size for radiation treatment.  I know your tumor is small...but one thing to note is that the last time I talked with Dr. Steiner (University of Virginia), he said that they are having great success with larger tumors now (over 3.5 cm), which was once thought too large for radiation.  Many times the "radiation types" on this site do not type much, so there is definitely more input from those who have had surgery.  So I just wanted to suggest that you also check into the radiation side of the house as well for your options.   Actually, I would suggest that you research your self until your exhausted and then pile up the data and then make a decision...that's the hardest part...no matter which path that you choose.  We are fortunate that these things grow slow and we're not forced into an immediate decision unless it's causing problems that we can't handle...

We can definitely relate to difference of opinions between docs.  We are forced to minor in medicine  :)  and make an educated decision for ourselves.  This is a great bunch of people here, well versed in every aspect of the  "free loader" that we all have in common. 

I will keep you in my prayers...

GM
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Ellid

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Re: Second opinions can be confusing...
« Reply #7 on: January 16, 2007, 08:28:23 pm »
Lisa,
Please ask Dr. Mason how many procedures he does each year and who his "team" is comprised of.  When I met with him in 2004 he was not doing very many and he also stated at the time he operated alone.  He was ready to operate on me but I chose to go to Mass General.
Jane

He still works alone and does exclusively translab.  He said it was because it's less invasive because the brain stem isn't affected, but it might be that he isn't comfortable with retrosigmoid or middle fossa.

Oh, news on Baystate...they're getting a gamma knife machine.  I'm not crazy about trying it (especially being one of the first patients - eek!), but they're being trained on it this spring.

Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

Ellid

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Re: Second opinions can be confusing...
« Reply #8 on: January 16, 2007, 08:30:16 pm »
Lisa,

Have you considered radiation?  Your tumor is a perfect size for radiation treatment.  I know your tumor is small...but one thing to note is that the last time I talked with Dr. Steiner (University of Virginia), he said that they are having great success with larger tumors now (over 3.5 cm), which was once thought too large for radiation.  Many times the "radiation types" on this site do not type much, so there is definitely more input from those who have had surgery.  So I just wanted to suggest that you also check into the radiation side of the house as well for your options.   Actually, I would suggest that you research your self until your exhausted and then pile up the data and then make a decision...that's the hardest part...no matter which path that you choose.  We are fortunate that these things grow slow and we're not forced into an immediate decision unless it's causing problems that we can't handle...

We can definitely relate to difference of opinions between docs.  We are forced to minor in medicine  :)  and make an educated decision for ourselves.  This is a great bunch of people here, well versed in every aspect of the  "free loader" that we all have in common. 

I will keep you in my prayers...

GM


I'm seriously considering seeing Dr. Loeffler at Mass General - he does proton beam work and has an excellent reputation.  If nothing else, I'd like to hear what *he* has to say about the "sticky AN problem."

thanks for the support and encouragement.  I'm so glad I found this board!

Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

Kathleen_Mc

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Re: Second opinions can be confusing...
« Reply #9 on: January 17, 2007, 03:27:21 am »
Ellid: My only suggestion is to research your options, seek the opinions of the professionals and do what feel right for you. I don't think I've ever heard anyone who did this say later they wish they'd gone another route. We are all individuals and what feels right for one is not right for another. I had always said if I got another tumor I would not treat it at all, when the regrowth was found I was going with the idea of gamma knife but when it was time (on my terms) to have it treated I declined the gamma knife and went with surgery again and I have no regrets.
Best of luck, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Ellid

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Re: Second opinions can be confusing...
« Reply #10 on: January 22, 2007, 08:37:53 pm »
Ellid: My only suggestion is to research your options, seek the opinions of the professionals and do what feel right for you. I don't think I've ever heard anyone who did this say later they wish they'd gone another route. We are all individuals and what feels right for one is not right for another. I had always said if I got another tumor I would not treat it at all, when the regrowth was found I was going with the idea of gamma knife but when it was time (on my terms) to have it treated I declined the gamma knife and went with surgery again and I have no regrets.
Best of luck, Kathleen

You're exactly right:  I was going over both appointments with my therapist last week, and I suddenly knew which doctor I felt most comfortable with and which treatment I would choose if the AN shows any growth after the MRIs.  So...if it grows, I'm going with Dr. McKenna.  I plan to talk to Dr. Loeffler at some point as well, but I'll definitely be treating with the MEEI/MGH team.  I felt more comfortable with them and I know I won't have any regrets.

Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

pearchica

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Re: Second opinions can be confusing...
« Reply #11 on: January 23, 2007, 10:32:15 pm »
Hey Ellid: second opinions can be confusing- remember you have time to research this is detail and come up with the best desicion that is right for you. My first guy(Sacramento ENT) said translab to debulk the tumor with gamma knife to kill the rest of the bugger.  The second guy(House Institute, Los Angeles) said tranlab all the way, no gamma knife and the third guy (Stanford) I spoke to today is for Regsmoid as he wants to peserve hearing albeit a 5 to 10% chance in my case as I have a 2.5CM Left AN and may leave a sliver in there to make sure my facial nerve isn't affected...and no cyber knife radiation. In my case I'm going with the third guy (Stanford) because I felt most comfortable in the academic environment and the other 2 guys aren't even considering hearing preservation at all- not that 5 to 10% is a big chance but as I'm going under the knife I might as well get the most bang for my buck.  Radiation may/may not be an option for you... All three surgeons felt at age 44 I was a great candidate for surgery. House and Stanford felt radiation not best option for me. Stanford (who does both) was pretty compelling that the long term outcome of radiation is not known and for someone young, why incur the risk albeit small.  And yes, they all will encourage surgery, it is the tried and true procedure.  However, if my tumor were small, I would take the wait and see approach. Unfortunately, mine is starting to affect the cerebellum so while I don't have to deal with it today, I do need to deal with it relatively soon.  Good luck, I hope this was helpful- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

 


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