Author Topic: Decision Making Process and Limitation  (Read 9030 times)

greentea

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Decision Making Process and Limitation
« on: November 11, 2012, 11:55:37 pm »
I was diagnosed with AN recently. The tumor size is around 2.5cm (one doctor told me it's 2 and the other told me it's 2.5). I have been communicating with some members to get their opinions. I really appreciate the opinions, but due to my mailbox capacity limitation, I think it's better if I start asking questions on the forum and I hope to get any help with anyone as possible.

So here goes my questions:
1. Before you make a decision, how do you decide which approach to go for? The doctors that I have consulted have been suggesting translab (or at least this is what i remember before i know it's one of the approaches). How do i know which doctors are good in other approaches and how do i know which approach is the best way to go? What are the risks of each approach?

2. After the surgery, what major and minor limitations did you have? And how did you overcome it? How long did it take before you are completely recovered? Did it affect your job performance? Did you change to a different field because of this?

Any other suggestions are appreciated.

Thank you.

CHD63

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Re: Decision Making Process and Limitation
« Reply #1 on: November 12, 2012, 09:44:17 am »
Hi greentea .....

So glad you decided to start asking questions here on the ANA discussion forum.

I so wish there were easy, "cut-and-dried" answers to your questions.  Unfortunately there are so many variables (exact location of the tumor, shape of tumor, hearing loss, severity of symptoms, etc.) involved besides tumor size that each of us has had a different situation to consider.

The important thing (in my mind) is to seek a variety of opinions, given your particular situation, and then at some point you will know what is the right decision for you.  If you have already communicated with some forum members already, you probably know that there are various centers around the country (U.S.) who will do free consultations with no obligation if you send a copy of your MRI and audiogram to them.  (Many of us sent ours to House Ear Clinic in LA ..... see:  http://www.houseearclinic.com/consultation/acousticneuroma  )

As for approach ..... this is for you and your chosen doctors to determine together, given the options you may or may not have.  Translab gives the best view to the surgeon(s) for tumor removal, but always results in total deafness on that side.  If you still have good hearing, you may want to explore a surgeon who is experienced in the mid fossa approach, which gives the best chance for hearing preservation.  With a tumor 2 - 2.5cm, you may also be a candidate for radiation treatment (gamma knife, cyberknife, etc.)

The post-op results are so highly individual, it cannot be predicted with complete certainty.  In my case, I am now SSD (single side deaf) but have had wonderful results with my Oticon Medical Ponto Pro bone-anchored hearing device.  I have some ongoing balance issues (my case is somewhat different than most), but through vestibular therapy, I have learned how to compensate for these deficiencies.

In my case I was a retired school teacher before being diagnosed with an AN.  However, I truly feel I could have returned to teaching post treatment.

Hopefully you will have other replies here.  In any case, keep asking all questions you may have ..... that is why many of us stick around.

Clarice
« Last Edit: November 12, 2012, 03:46:09 pm by CHD63 »
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

Jim Scott

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Re: Decision Making Process and Limitation
« Reply #2 on: November 12, 2012, 03:20:09 pm »
Greentea ~

Bythe time it was discovered my AN was large (4.5 cm) and surgery was the only option I had.  My neurosurgeon, with decades of successful AN surgeries behind him, informed me that due to the tumors location, Retrosigmoid was the best approach.  Trusting this mature doctor to the utmost, I quickly acquiesced to using that approach.  He performed a 'debulking' surgery, effectively 'thinning' the tumor and reducing it's dimensions (from 4.5 to approximately 2.5 cm) to make it more susceptible to the planned irradiation treatment that followed, ninety days later.  This two-step approach was employed in an effort (wholly successful) to avoid damage to the facial nerve. 

To be frank, my neurosurgeon did not discuss options with me but presented what he thought - based on my MRI scan and strongly stated desire to avoid facial nerve damage - would be the best approach to address my AN with minimal risk of facial and other complications.  I recognized this as a very rational and well-thought-out plan that he presented with much humility, considering his age, experience and sterling reputation.  During his presentation this fine neurosurgeon kept using the phrase "if you choose to hire me" which I found very affecting considering the fact that he had all the patients he could handle and was close to retirement so he certainly didn't need another AN patient to operate on.  My surgery took almost nine hours to perform.  Fortunately, the doctor had a much younger female neurosurgeon assisting him (his protege) and he told us later that she was "invaluable" to him during the long and very intense procedure. 

I relate this to make the point that in some cases (such as mine), choosing a procedure is not a viable option.  However, choosing the doctor, is.  In my case, this neurosurgeon was a member of a neurosurgery practice that my wife had used for spinal surgery a year earlier.  Her neurosurgeon did not operate on acoustic neuroma patients - but his partner did...quite successfully.  When I was admitted to the hospital for the operation (3 weeks after my diagnosis) a nurse told us that I had "the best doctor in the state for acoustic neuroma surgery".  That was reassuring, to say the least.  By the way, before agreeing to consult with him I asked my neurosurgeon about the number of AN surgeries he had performed.  He said, over the past 30 years, many hundreds.  In response to my question about headaches stemming from the Retrosigmoid procedure he also stated, quite emphatically, that his AN surgery patients "didn't get headaches".   This proved to be true in my case.  No headaches before or after the surgery.  I experienced no CSF leaks or other post-op issues.  I was discharged from the hospital five days after I had been admitted.  I recovered rapidly, resuming driving (with my doctors permission) within a fortnight of my surgery. 

Obviously, my case is a success story that I'm happy to relate to newly diagnosed AN patients - like you - seeking information, background and advice.  As you noted, AN surgery results are individualized and no doctor can credibly guarantee the outcome.  My doctor didn't.  He simply assured me that he would do ebverything he could to effectively reduce the tumor's size and thickness and do so with no or minimal damage to my facial and other cranial nerves.  He was true to his word and, as I've stated, the surgery and later radiation (FSR) were successful. 

As to my post-op experience; I suffered near-debilitating fatigue the first two weeks that I was home from the hospital and did little but nap and watch TV.  I slowly gained strength and began a walking regimen (at a local park, accompanied by my wife) that slowly but surely helped my balance - and stamina - increase and improve, although not quite to pre-AN levels.    I had recently retired (at age 63) so I had no work-related issues to deal with and cannot offer any insight on that point.  AN surgery recovery takes approximately six weeks, although that is a very general time frame.  I needed all of that and, realistically, probably a total of 8-12 weeks before I felt fully recovered.  However, I noticed that a year after my surgery I thought I had improved even more.  Today, over six years later, I'm doing great!  My balance is not what is was prior to my AN manifesting itself but I consider it quite 'serviceable'. I can walk up and down stairs without using a handrail and I ride mall escalators without the need to grasp the handrail, so I guess I'm doing O.K., even if I won't be doing any tightrope walking anytime soon.  ;)

I would suggest you have as many doctor consultations as you feel are necessary but don't seek 'perfection' in a doctor (they're only human) and always understand that no doctor can guarantee your surgical outcome but that past performance (successful surgeries) is worth asking about.  Post-op recovery varies with the individual and whether complications arise.  I was 63 and in otherwise good health (no heart, lung, back or joint issues, normal BP, BMI of 21.5 etc) so I guess that was a positive factor.  I also had complete confidence in my doctor and fully expected to not have any problems and recuperate quickly, which is exactly how things worked out.  I also had a lot of folks praying for me, which, in my opinion, is no small thing.

Specific questions here will usually receive specific answers although we aren't physicians and can only offer what we've learned from our own and others AN experience.  I trust the AN discussion forums will continue to be a source of help and encouragement for you in the weeks and months to come.

Jim 
« Last Edit: December 26, 2012, 04:00:26 pm by Jim Scott »
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.

leapyrtwins

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Re: Decision Making Process and Limitation
« Reply #3 on: November 13, 2012, 09:09:10 pm »
Green -

AN treatment decisions are probably the hardest part of the AN Journey.

I was given the choice of surgery or GK and after weighing all the pros & cons, looking at the statistics related to side-effects, etc., I decided surgery was for me.  It's not for everyone; you have to make up your own mind based on what you think is best for YOU.  A big factor for me was just wanting the tumor out of my head so I could get on with my life.  I decided whatever side-effects I was going to have I wanted to meet them head on, deal with them, and move forward.  I didn't want the uncertainty of radiation - waiting to see if the tumor would die, waiting months (possibly as many as 18) before I knew what side-effects I'd have, etc.

In making my decision I followed my head, my heart, and my gut.

Once I decided on surgery my doc gave me the choice of translab or retrosigmoid.  I chose retrosigmoid because although my hearing was diminished I still had decent word recognition (with retrosigmoid there's only a slight chance of preserving hearing, but I wanted my docs to at least attempt to preserve it).

Some say that two of the biggest risks of retrosigmoid are facial paralysis and headaches; I, thankfully, have neither.

I had some minor "limitations" post op - metallic mouth (everything tastes weird), double vision, dry eye, dry mouth, balance issues, nausea & vomiting.  I also had slight paralysis for a day or two post op; a dose of steroids rectified that.  My only "major" limitation is SSD (single-sided deafness) and I dealt with that by opting for a BAHA implant.   I'm extremely happy with my BAHA, but should also note that there are other non-surgical options for SSD. 

My biggest issue when I returned to work (desk job; accountant) was fatigue.  I returned 2 1/2 weeks post op and worked half days; I went back full days 4 weeks post op.  Three months post op I traveled for business and worked 10-12 hour days without any issues.  This is my experience; others have different experiences.

Recovery after surgery takes time.  Typically the surgery is long - mine was 7 1/2 hours - and obviously it's major surgery.  But once again, people have different experiences.  Some on this Forum were out of the hospital in record time, others were there longer; I spent 6 nights in the hospital but some spent more time than that.   

No one - including docs - can say with 100% certainty what your experience will be like, but for the most part there is life after an AN.  It may take a few weeks or a few months to get back to normal - or to adapt to your "new normal" - but there are worse things in life than an AN.

Good luck on your 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

Kathleen_Mc

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Re: Decision Making Process and Limitation
« Reply #4 on: November 14, 2012, 01:12:44 am »
I did not have options. My tumor was very large and within mm of the brain stem hence I got the first available surgeon and it was "hurry up and get on the table". As it turned out he was a very well known and respected pioneer in neurosurgery and I believe I had the best possible outcome. Translab approach, I lost all that one could loose but in his words "it's a wonder you're still walking and talking" and he bluntly told me there was only a 50% change of living through the surgery (or certain soon death without surgery).
When it came time for surgery of the regrowth there wasn't much questions as there wasn't anything to worry about saving, retrosigmoid as that Dr. preferred.
Kathleen
« Last Edit: December 11, 2012, 10:52:13 pm by Kathleen_Mc »
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)

greentea

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Re: Decision Making Process and Limitation
« Reply #5 on: December 09, 2012, 07:15:36 pm »
Thanks everyone for the response and advice. I want to go to one facility but due to it is out of network I may need to look for another one. I will keep everyone posted.

skipg

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Re: Decision Making Process and Limitation
« Reply #6 on: December 11, 2012, 12:23:43 am »
If only someone would come up with a flow chart to help us make a decision. For me it was a little easier because I did not want surgery. I had serious brain surgery years ago (AVM of the cerebellum) and did not want another round of this. That left me to decide on which type of radiation treatment to seek. I was good with watch and wait until my unwelcome guest decided to double in size. I had already decided on CK due to the fractionated treatments and the doc here had trained at Stanford. When the Proton Center opened in Hampton, Va (32 mis from home) I did more research and consulted with the doctor over there. Proton Therapy just felt right. Now 3 weeks after treatments I know I made the right decision for me. My hearing was already gone so hearing preservation was not a big deal and when the tumor shrinks and reduces pressure on the nerve I may get some hearing back. My worst side effect  from the AN is the tinnitus. The treatments did nothing to decrease the severity of the screaming and I am told once you have it, it is yours to live with. This was not an easy decision to make especially changing directions after I had decided on CK, but did turn out well for me and I am expecting nothing but future good reports. Research and more research is very important, and along with prayer we came to a decision that was good for me.
Many prayers and positive thoughts go out to you as you travel this journey.
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

greentea

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Re: Decision Making Process and Limitation
« Reply #7 on: December 11, 2012, 07:00:09 am »
Thanks skip for sharing. When I was first discovered the AN and after did my research, I asked the doctors about GK or CK but were told that's not possible for the size. The weeks and months have been long for me - sometime I even try not to think about it at all and take a break. I just want to get it over but still need to select the approach and doctor that I trust. All the posts shared on this forum has been very helpful for me - to understand what AN is and to find a treatment/doctor.

PaulW

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Re: Decision Making Process and Limitation
« Reply #8 on: December 11, 2012, 06:07:31 pm »
Some doctors do not measure the tail of the AN within the Internal Auditory Canal..
This can lead to the differences in size quoted. If your AN is 2 cm excluding the IAC portion I suspect that you are a good candidate for radiation

The rule of thumb is that AN's less than 3 cm,  can be treated with radiation.
Most doctors actually go by the volume of the tumour which is typically 12.5cm3 cutoff

A 2cm tumour with a .5cm tail has a volume of about 3.3 cm3. Thats well below the 12.5cm3 cutoff

I would certainly investigate radiation even if you decide to not go down that path.




10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

grace

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Re: Decision Making Process and Limitation
« Reply #9 on: December 18, 2012, 02:43:22 pm »
Wow this is a big one! After 150+ hours of AN research and 7 expert AN MD's I got 7 different answers. I was thinking of CK for this June at the latest -b/c of some hearing loss and balance issues... but after Dr Tward at Boston General- who called me back after sending the MRI and the whole package of questions and others opinions he seemed to answer me honestly. He's done over 1000 if these AN's and said with or without they can grow back. and with treatment there has not been 10 yrs of research to show it helped more...esp with cases that have grave side effects b/c of where they are located. I am so happy he was so honest. One Dr said they double in size every 18 months , he said they grow slowly about 1mm a yr and since mine is small I can wait and if it changes my quality of life then I should intervene otherwise there is no evidence to show otherwise, If I was stuck in bed due to vertigo I would go forward with my treatment which was going to be CK. Since I just read on this forum that after  radiation it may be harder to remove the tumor I am going to wait on that too. Just do your homework as every MD seems to come from their own school of thought. God Bless you.... I am still overwhelmed but thought my comments may help.... Does anyone seem to do less than they used to at a slower pace or just not do it? I used to be a real doer... now I think about it but my reaction time is different... ??? Thank You and wishing everyone a Merry Christmas and a healthy Holiday season.... Grace Gentle Healing...

PaulW

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Re: Decision Making Process and Limitation
« Reply #10 on: December 19, 2012, 02:36:55 pm »
Some good decision making flow charts below

This one is from the ANA

http://www.anausa.org/index.php/overview/acoustic-neuroma-decision-tree

This flowchart comes from the practice guideline for Acoustic Neuromas from the International Radiosurgeons Association

Full text here. http://www.irsa.org/AN%20Guideline.pdf


« Last Edit: December 19, 2012, 02:41:00 pm by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

skipg

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Re: Decision Making Process and Limitation
« Reply #11 on: December 21, 2012, 09:02:07 pm »
Interesting that radiotherapy is seldom mentioned. Having completed 30 treatments of proton therapy, I know for me,  I made the best decision.
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