Author Topic: Just Diagnosed -- Confused by doctors  (Read 5414 times)

Dee-dee

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Just Diagnosed -- Confused by doctors
« on: August 05, 2011, 11:19:13 am »
Hi everyone, I was recently diagnosed with a 2.3 cm AN.  I am a bit overwhelmed by all the information and all the doctors opinions.  To complicate matters, my father, brother and husband are all doctors with their own opinions, although none of them are experts in this field. They are the same guys who told me I had wax in my ear when I said I lost hearing.

 I have now seen 4 of the top people in NY and each one said or recommended something different as follows:

1.  Dr #1 does both gamma knife and surgery: he recommended Gamma Knife since I have no symptoms other than hearing loss and gamma can preserve some of the hearing I have left (44% -- Can hear approaching cars but can't distinguish words) and isn't "surgery".  When pressed, he said if  he operated he would do retro sigmoid because in his view it is unconscionable to do Translab in any person with some hearing left since he does not know if he can save the hearing until he gets to the nerve and in Translab he has already destroyed the ear before he gets to the nerve.  This doctor, in response to my questions, had one patient die in his career (from a heart-attack post-op).
 2. Dr. # 2 recommended Translab since hearing can't be saved; the tumor is too far into the canal.  Dr #2 would put in a titanium plate in the skull to close it up.
3. Dr. # 3 also recommended Translab since tumor is too far into the canal but no titanium plate.  This doctor said he removes more titanium plates which have caused headaches and muscle pain than he puts in. This means I will have a soft spot behind the ear with no skull coverage on it.  Freaks me out a bit. This doctor does gamma knife as well but said  I was too young (53) for radiation of any kind.  They don't know the long term effects of radiation.  He had one 30 year old patient die in his career from retro sigmoid post-op bleeding
4.  Dr. #4 recommended retro sigmoid in the hope of saving some hearing.  He had two patients in his career die of infections from retro surgery.

Any insight on any of these topics would be appreciated.  Anyone post Translab out there living with no titanium plate?  Anyone with no symptoms other than hearing loss who underwent Gamma knife and then did or did not get additional symptoms? Anyone with second treatments after gamma knife.

Thank you all and thank God for this website.
2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

Dolwin

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Re: Just Diagnosed -- Confused by doctors
« Reply #1 on: August 05, 2011, 12:19:35 pm »
Dee-dee,

I can see why you're confused!  I haven't seen as many doctors as you have yet (just 1 neurosurgeon and 1 radiation oncologist) but I also had some conflicting opinions.  I'm set on surgery now though, next step is finding "the" surgeon for me - never realized how tough that would be before this!

I'm a relative newbie compared to many on the forum, but I'd probably lean towards surgery and if you still have 44% of your hearing retrosig sounds like a better option since you (hopefully) preserve what you have left.  I don't know anything about the titanium vs. no titanium plate idea, that hasn't come up in a conversation yet with the surgeon I've spoken with so far.

Good luck to you with your continuing research!
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

Dee-dee

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Re: Just Diagnosed -- Confused by doctors
« Reply #2 on: August 05, 2011, 12:43:53 pm »
Thank you!  I was wondering why you are not considering gamma knife (if willing to share your thoughts)?
2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

chrisransom

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Re: Just Diagnosed -- Confused by doctors
« Reply #3 on: August 05, 2011, 02:50:44 pm »
Dee Dee,

Welcome to this site!  Sorry to hear about your AN but we're all here for you.

My, what a conundrum!

I was just diagnosed last winter and am firmly in watch and wait because of my symptoms.  I consulted with 2 teams of neurotologist/surgeons and none of them said to me whatyou were told.  Both gave me the ins-outs of gamma vs surgery (both were predisposed to surgery but said they did bot procedures).  I too thought my hearing problems were just wax buildup and postponed having it looked at for about 2-3 months until I had a bout of crazy tinittus the brought me to my ENT and ultimate diagnosis.

My understanding is that Translab is only for those who have already lost all functional hearing  - there's no chance of preserving any hearing if they go by that route.  Having said that there are instances of people saving some hearing using mid-fossa and retrosig but both of my consulting docs made it clear that it was unlikely that any hearing poreservation would be "serviceable".  So basically, if you have any type of surgery, the odds are that the hearing will be 100% gone in that ear when you wake up. Surgery has the best odds of getting 100% of the tumor out - that regrowth occured very infrequently.  The never said anything nor have I read anything in this forum about a titanium plate.

They also told me that Gamma had the best odds of preserving some hearing  but that it may diminsh somewhat while the tumor dies.  It may or may not return.  They both said there is a greater chance that the AN could regrow after gamma - regrowth is still quite infrequent but more so than with surgery.  That there are inherent complications of doing surgery after gamma if regrowth does occur.

Anyway, contunire to browse around in here, get all the information you can before making a decision - learn learn learn.  There are lots and lots of people in here who will share their experiences with you to help you make the best decision for you.

Again, Welcome!

Chris


Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

New girl

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Re: Just Diagnosed -- Confused by doctors
« Reply #4 on: August 05, 2011, 04:02:20 pm »
I have just talked to many surgeons and have not heard anything about titanium plates.  I guess I assumed they would put back the piece of skull that they removed.  Is that true or do they leave a soft spot?  I need to think about a soft spot... 

Dee Dee - Sorry to hear about your diagnosis.  This site is GREAT for getting info on other peoples experiences.  Many people on this site send their MRIs to the House Ear Institue in LA since they specialize in ANs and they will give you a free consult via phone.  It may be worth seeing what they think.  I am having retro sigmoid surgery this September.  This approach was chosen since I do have hearing in my AN ear so they want to try to preserve it.  "Try" is the key work since I was told I still may lose all hearing.   Best wishes to you.
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Dolwin

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Re: Just Diagnosed -- Confused by doctors
« Reply #5 on: August 05, 2011, 04:03:41 pm »
Thank you!  I was wondering why you are not considering gamma knife (if willing to share your thoughts)?

When I spoke with the radiation oncologist, she recommended surgery as my best option due to my AN already putting pressure on the brain stem (she showed us on the MRI images).  With my hearing already being lost on that side and the likelyhood of AN shrinkage being small (and shorter term swelling of an AN post-radiation), there were more positives to surgery than any form of GK/CN/etc.  Plus the possible complications of radiation later in life just from the exposure, since I'm a (relatively speaking) young 37 still.
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

ombrerose4

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Re: Just Diagnosed -- Confused by doctors
« Reply #6 on: August 05, 2011, 06:36:16 pm »
Hi Dee Dee,

Just want to introduce myself, my name is Lauren and I am a support group leader for ANA's New York group. Please feel free to reach out to me or others for information. I am almost 2 years post op and I do have a titanium plate and screws in my head. Our next meeting is on September 24th and we will be having Dr. Stephen Rush from NYU speak to the group about Gammaknife. If you would like to talk please send me a PM. I understand what a confusing time this is, so much information and so many opinions, but I believe you are doing the right thing by all your research. Most important is that you feel comfortable with what ever decision you make and that you have a good relationship with your doctor. I hope to hear from you.

Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

deboline

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Re: Just Diagnosed -- Confused by doctors
« Reply #7 on: August 05, 2011, 07:39:25 pm »
Dee Dee,
Hello, I had retro-sigmoid in Nov 2004 for a 2.5cm AN.  I was given a 60/40 chance of hearing preservation and a 95% chance of no facial nerve damage - the nerve would be monitored during surgery. Even if there was nerve trauma, I was told that 99% heal completely.  Unfortunately I am one of the outcomes where it seems that none of the percentages went my way - this is something you must really consider when making your choice - focus on your quality of life and what you feel is most important.  I also did not understand the term "post op headache". I really had never had a real headache in my life. Well I can tell you, the post op headaches are devastating and change your quality of life to the extreme.  I was fortunate enough to have a "cranioplasty revision" in 2008 - basically a surgeon went back in and removed the titanium mesh that had been placed over the hole and cleaned up the nerves. My headaches immediately improved and are tolerable now and also can be managed with medication. My hearing nerve was cut during the surgery, so I now have a Baha.
A small piece of the tumor was left because of being entangled in the facial nerve. I was monitored at one year, two years and five years.  I am sad to say that now almost 7 years later I have just learned that my tumor has returned, 1.6cm this time.  I am leaning toward fractionated radiation with the purpose of trying to protect my already weak facial nerve and hopefully stop this thing from growing once and for all.  I also will have to live with the fear of the radiation not working and a follow up surgery being made more difficult, however, at 42 I feel this is my best choice to preserve my "quality of life" that it took me almost 5 years to get back after surgery.
You should not be frightened by anyone's story, however, the biggest lesson that I have learned is to not only ask questions - but understand what is meant by the terms - single sided deafness, post op headaches, facial nerve damage (which can really affect your eye - dry eye and lack of eye lid control). 
If you ever want to email me specific questions feel free - I have had years of follow up treatments and I am determined not to let the AN define my life. I will continue to fight and hopefully over the next year will have a positive story to share with everyone!
Keep going to doctors to you find someone that you are comfortable with and covers all the things there are to consider. My thoughts are with you!

mk

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Re: Just Diagnosed -- Confused by doctors
« Reply #8 on: August 05, 2011, 08:23:05 pm »
Wow, quite a bit of confusion and conflicting information in this thread. As a veteran of both procedures (as well as having spent countless hours on the forum) I will try to share my understanding/perspective:

- Titanium mesh: My understanding is that it is commonly used in the retrosigmoid/suboccipital approach. I wasn't aware that it is also used for translab. From what I have read on the forum fat graft is commonly used after translab. The titanium mesh is used frequently after retrosigmoid, but not always; my surgeon put the bone back, and held it in place with bone cement. There have been occasional reports on the forum of headaches and other side effects caused by the mesh.

- Translab vs. retrosigmoid and hearing preservation: Generally, for both surgery and radiation, the better the hearing going in, the more the chances are that some useful hearing can be preserved. Typically surgeons will recommend the procedure they are most comfortable with, and the one they feel is more suitable for the case. If hearing is greatly diminished, especially when word recognition is not satisfactory they will often opt for translab: the common consensus is that translab provides a better view of the facial nerve, thus presenting better options for preserving it. For large tumors some surgeons (like mine) prefer retrosigmoid, even if there is no useful hearing left, because they feel that they can access the tumor better. My surgeon also told me that in his view translab exposes "too much of the facial nerve too soon", but I don't think this is the general consensus.

- Nowadays radiation is not  considered a treatment suitable only for older patients. There is a long history at least for GK (since the 70s), and many younger patients have undergone noninvasive radiosurgery successfully. The criteria should be the size and location of the tumor, whether it presses the brainstem, whether swelling would be potentially dangerous etc. You should seek the advice of someone who specializes in radiosurgery (GK, CK or fractionated). With radiosurgery the same rule about hearing preservation holds: the better you have going in, the more chances you have to preserve some hearing. However there is a great chance that hearing will diminish years post-GK. Radiosurgery generally carries a lower risk for major complications, such as facial nerve and other cranial nerve injuries and a high percentage of control, especially in smaller tumors.

- I wouldn't worry about deaths - this is very rare with modern microsurgery.

There is a lot of valuable information on the forum, the most important thing is to be informed and ask your doctors the right questions.

Marianna

 
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

leapyrtwins

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Re: Just Diagnosed -- Confused by doctors
« Reply #9 on: August 05, 2011, 09:13:11 pm »
Bottomline, you have to make your own treatment decision - it's a very personal choice.

Doctors and their opinions should definitely weigh into your decision, but doctors should not make your decision for you (yes, this even includes the doctors in your family).

You need to educate yourself (sounds like you've been doing this), weigh all the pros and cons, decide what risks you are comfortable with, and then decide what is right for YOU.

Surgery was the right choice for me, but it's not the right choice for everyone.  You should follow your gut and your heart.

Good luck - the decision making is oftentimes one of the hardest parts of the AN Journey.

Best,

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

CHD63

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Re: Just Diagnosed -- Confused by doctors
« Reply #10 on: August 06, 2011, 07:53:13 am »
Hi Dee-dee .....

Just adding my welcome here to this forum.  As you can see, responses are all over the ballpark on this.  Just on this forum alone, you could probably find justification for doing just about any treatment option you were given.  That does not mean it is right for you.

As Jan said, bottom line is it is whatever you feel is the most logical treatment for you.  This is a very personal decision that really only you can make.  You are doing the right thing to research your options.

Having gone through two acoustic neuroma surgeries ...... first one retrosigmoid for hearing preservation and second translab for total tumor removal ..... I can say that neither of my surgeries were as you have been told by the surgeons you have consulted.  That does not make either situation any better than the other.

I will say this, if they are telling you your tumor is high up in the canal and you only have 44% hearing with poor speech discrimination, the likelihood of saving your hearing is greatly diminished.  With translab, the surgeons have the best look at the internal auditory canal for total tumor removal.

My translab surgery was three months ago at HEI and I knew going into it that I would lose all hearing in my left ear (I had about 20% pure tone hearing with 100% speech discrimination following the retrosigmoid surgery three years ago.)  So, I inquired and did, indeed, have the Oticon Ponto Pro bone anchored hearing device) abutment implanted at the same time as the translab surgery.  Two days ago, the processor was attached and I am ecstatic to "hear" from my left side again.

Best thoughts and feel free to PM me if you have any questions.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

New girl

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Re: Just Diagnosed -- Confused by doctors
« Reply #11 on: August 06, 2011, 08:07:41 am »
Thanks everyone for the info on the titanium plate/mesh.  I am going to follow up with my doctor to see his opinion.
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

skipg

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Re: Just Diagnosed -- Confused by doctors
« Reply #12 on: August 06, 2011, 09:22:14 am »
Dee Dee,
I am in the WW group but before going this route I did extensive research and consulted with 7 different Doctors, all with AN experience. I settled on a group of three that use the team approach to treatment. One is the surgeon, the 2nd an ENT, and the third a radiation oncologist that uses the CK. All agreed on the WW approach for me. The surgeon agreed with my ultimate choice, if it becomes necessary, on CK. He will work with the radiation Dr in mapping out treatment. The caution he had was that a possible later surgery would be more difficult for him due to scar tissue, but he has done post CK surgery. The point I am making is to due as much research as you can regarding the different procedures based upon your AN size and location then find Doctors that use the team approach. It may seem frustrating at first but it will all come together for you. There were times I became overwhelmed and had to step back for a needed break from the AN issues. This is another bump in life's journey and you have a long and healthy road ahead of you.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Jim Scott

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Re: Just Diagnosed -- Confused by doctors
« Reply #13 on: August 06, 2011, 01:34:03 pm »
Hi, Dee Dee ~

I want to add my welcome to the ANA discussion forums.  You've been offered lots of cogent suggestions and opinions based on experience but, as you well know by now, you, alone, will have to make the final decision on the treatment to address your AN. That is as it should be because, as well-meaning as your family, friends (including all of us on this forum) and physicians may be, only you will have to live with the consequences of whatever treatment you choose.  Because AN surgery and/or radiation is demanding and has the possibility for negative outcomes, post-treatment, all the pros and cons must be weighed.  Frankly, its a big and sometimes exasperating job - but it has to be done.  I've seen more than one poster on these forums lament not having more information or consulting with more than one or two doctors before agreeing to their treatment.  Its axiomatic that with this kind of complicated condition no one can be guaranteed a perfect outcome.  The best we can do is research, ask questions, make notes and use our best judgment.  Don't be swayed by doctors or anyone else.  Many of us can offer our personal experience and we're happy to do so but others AN experience does not ensure yours will be identical (good or bad).  However, you seem to be on the right track with your research and although it can be daunting, even confusing at times, I'm confident you'll sort out and make good use of all the information you're receiving.   One thing you can be sure of in this uncertain situation: all of us will be here to help, advise, inform and, most of all, support whatever decisions you make so please keep us informed as your AN journey continues.  Thanks.

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.

 


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