Micro vs. GK - Recently diagnosed and need some help

[kmr1969]

I was recently diagnosed with AN at the beginning of July.  I met with a neurosurgeon, Dr. Weingart, at Johns Hopkins in mid August who recommended translab.  I was kind of in shock for most of that appointment and really couldn’t get any questions out.  My fault, not his.  The doctor was professional and spent a fair amount of time with my wife and I, but quickly dismissed the radiosurgery option.  My age, 43, and the size of the tumor, 2.8 cm, seemed to be the major factors.

After the shock of that appt wore off, my wife and I started calling people on the ‘Willing To Talk’ list and as a result learned of HEI in LA.  I sent my MRI and spoke to Dr. Brackmann who was very nice, but didn’t have much time to talk as he was between surgeries.  He also recommended translab, but reassured me that my tumor was medium sized with 2.4 cm at its maximum dimension.  I am awaiting a call back from Dr. Brackmann as he was going on vacation the next day.  He offered to call me on his vacation, but I told him to just enjoy his time as his call had given me some peace.  2.4 cm sounded better than 2.8 cm, and
so I started researching radiosurgery.

I sent my MRI and hearing test to Dr. Lunsford at Univ. of Pittsburgh Medical Center and he reviewed the info and sent me a letter stating that he feels that I am an excellent candidate for GK.  I didn’t speak with Dr. Lunsford yet, but I have an appt scheduled with him for next Wednesday.  Since it will be a 9 hour round trip drive for me from Baltimore to Pittsburgh, I want to make sure to make the most of my time with Dr. Lunsford.  If anyone has any experience that they could share about the UPMC and Dr. Lunsford in particular it would be appreciated.  Also, any suggestions for questions to ask and how to make the most of my time with Dr. Lunsford would also be appreciated.

One thing I am hoping to do with him is review the MRI and get his opinion on the size which he referred to as ‘moderate’ in his letter to me and also learn whether it is touching the brain stem.  I’ve noticed here that most people seem to know the 3 dimensional size of their tumor.

Finally, if anyone has any experience that they could share about HEI and Dr. Brackmann, and how again I can maximize the next call with him, I’m all ears.

BTW, I have 95% hearing my affected ear, ringing in that ear, but no dizziness or balance issues that I notice.  I have noticed some mild numbness in my face which seems to come and go.

Thanks!

[Jim Scott]

Hi - and welcome!

I'm sorry you've been diagnosed with an acoustic neuroma but pleased to learn that you discovered the ANA website discussion forums and have made use of them as well as the 'Willing to Talk' list.  Unfortunately, I cannot offer any personal insight on HEI or Dr. Brackman except to amplify what you've been told regarding their excellent reputation and assure you that you'll be receiving many messages from those who have been AN patients at HEI.

In most cases the MRI will show whether the AN is encroaching the brain stem (mine was, but it was very large - 4.5 cm) which would preclude radiation, in most cases.  To the best of my knowledge (I'm not a doctor) A 2.4 cm tumor is considered 'medium'.  Many doctors that treat acoustic neuroma patients are adverse to using radiation on 'younger' patients based on the somewhat outdated theory that (a) you may need more radiation later in life e.g. cancer treatment and will have already received more radiation than is safe for humans to absorb and, (b) doctors claim to not know whether relatively high doses of radiation could cause problems later in life or cause the benign AN to become malignant. However, Gamma Knife has been used on AN patients since 1988 with no record of adverse effects to speak of and thousands have received GK treatments.  the number of AN patients treated with radiation that have seen the tumor turn malignant is below infinitesimal and not a serious cause for concern.

I underwent 'debulking' surgery for my large AN, reducing it from 4.5 cm to approximately 2.5 cm, then I received 27 Gy total radiation over 26 days.  Not only was the surgery and radiation totally successful (the tumor died) but I suffered no real complications.  I was driving again within a fortnight of my hospital release.  You are 20 years younger than I was when I underwent the surgery and radiation and, I assume in relatively good health (so was I) so you should do fine with radiation, if that is the route you choose.

Many of our members have been patients at HEI and others at UPMC so I'm confident you'll be receiving lots of useful information on this thread so check back here, often.   

Meanwhile, welcome to our little corner of the web and of course, we wish you all the best as you continue your AN journey.  We're here to help with advice, information and, most of all, support.  Consider us a part of your family.

Jim

[leapyrtwins]

GK may or may not be an option for you.  Most docs won't radiate an AN of 3 cms or more.  So if your MRI shows accurate measurements - and sometimes even the best MRI can be "off" - a 2.8 cm AN would make you a radiation candidate.   If your AN is really larger than 2.8 cms you may not be able to have radiation.

I'm not familiar with Dr. Weingart @ Johns Hopkins but it makes sense to me that Dr. Brackmann would say surgery.  It's what he does and what HEI is known for - it's a big business for them.  Dr. Lunsford is a name I've seen a lot on the Forum; and I recall favorable things. 

One question I'd ask any doctor is why go with the Translab approach when you have 95% hearing in your AN ear?  I'm not a doctor, but I'm curious as to why retrosigmoid or mid fossa wouldn't be an option for you, as neither of them would automatically "take" your hearing like Translab would.   Is this recommendation based on the location of your AN? on the size? 

I was 45 1/2 @ the time of my surgery and I was given the option of retrosigmoid or translab (or GK).  My AN was thought to be 1.5 cms - was discovered to be almost 3 cms during surgery approx. 6 weeks later - and was on the 7th and 8th cranial nerves. 

Obviously treatment choice is up to you - and dependent on the size and location of your AN - so keep an open mind, do your research, and them make the decision that you feel is best for you.  Treatment decision is oftentimes the hardest part of the AN journey.

Good luck,

Jan

[PaulW]

Hearing is rarely saved with microsurgery on larger tumours.
So translab is the safest way, with the least side effects.

There are differing ways of measuring tumours.
Some will only measure the extrameatal portion... (The bit outside the Internal Auditory Canal)
Some will measure both portions  and end up with a bigger figure, possibly 1.0cm bigger!
This may explain the sudden increase in dimensions.

The cutoff for radiosurgery is not actually 3cm.. Its actually based on tumour volume.
For a spherical tumour the generally accepted limit is around 3cm... I believe most places will treat up to 10-12.5cm3
If your tumour was 2cm x 2cm x 3.5cm you would still be a candidate.
3cm is a great rule of thumb, but individual situations may mean that Radiation is still an option for those with tumours larger than 3cm in one direction.

[kmr1969]

Jan,

Thanks for replying.  To my knowledge, the translab approach was the preferred option based upon the size the tumor.  From what I read the translab can be used for any sized tumor and provides the best access to the facial nerve.  Both surgeons did not feel that hearing preservation was a realistic goal for me.  I will definitely ask Dr. Lunsford to explain why the size and location of the tumor are conducive to GK surgery.  Unfortunately, I missed a call from Dr. Brackmann on Friday and I will ask him for the same explanation for his recommendation of translab.

Ken

[leapyrtwins]

Hearing is rarely saved with microsurgery on larger tumours.
So translab is the safest way, with the least side effects.

Point about hearing is well taken.  I lost my hearing despite having retrosigmoid, but I knew I only had a 50/50 chance of keeping it.  I wanted to play the odds though, since I felt that becoming automatically SSD was something I wanted to try to avoid.  As luck would have it, I ended up that way.  I opted for a BAHA, and am very happy with it, but nothing on the market today can replace my normal hearing.  Bottomline I'm glad I decided to have my surgeons try to save my hearing. 

Not sure that everyone would agree that translab is the safest way with the least side effects.  I know that's the theory.  But, I also know people who had translab and have more side effects that I did and they have lasting ones while I do not.  And there are many examples of this on the Forum.

Something to consider,

Jan

[Tumbleweed]

Hi, kmr:

I agree with Jan that Dr. Brackmann and HEI are predisposed to recommend surgery, as that is what they practice. However, if you impress Dr. Brackmann that preserving your hearing is critically important to you, he may recommend some form of radiosurgery (e.g., GK) or radiotherapy (CK). That was the case when I sought his consultation 5 years ago.

Since you have 95% of your hearing on your AN side, it would be a shame to lose it. Translab surgery always results in single-sided deafness (SSD). I suggest you ask your doctor for an ABR (auditory brainstem response) test to determine how robust your hearing nerve is on your AN side. If the nerve is still in great shape (as 95% hearing preservation suggests), it would make sense to seek an alternative to microsurgery that would preserve your hearing. Both GK and CK would give you a shot at preserving your hearing, with CK offering roughly 10% statistically greater odds of success. I'm pretty sure Jim is incorrect about how long GK has been used on ANs; I believe it's closer to 45 years at this point. Also, it is likely that your 2.4 to 2.8cm tumor is lightly encroaching on the brainstem, but that does not automatically preclude treatment with radiation. Most ANs will begin to touch the brainstem at roughly 2 cm measurement along the oblique transverse axis, as the IAC (internal auditory canal) and CPA (cerebellopontine angle) -- one or both of which an AN usually fills as it grows -- are each roughly 1 cm long in the average person, and once they are filled with the tumor, it has nowhere else to go except to begin to impinge on the brainstem. But again, the brainstem must be more highly impacted for radiation to be ruled out.

One other note: Translab is often the recommended microsurgical approach for tumors your size (but radiation is also a viable option). That's because microsurgery on medium-size tumors (such as yours) often results in SSD. Since translab is the easiest approach to a medium-size tumor and SSD is considered highly likely with any approach, translab is usually recommended.

UPMC and Dr. Lunsford both have great reputations. For GK, you can probably do no better than to go to UPMC.

You might also consider asking Dr. Steven D. Chang (Stanford University Medical Center in California) for a free consultation, which he gladly offers. His email address is sdchang@stanford.edu. He is both a neurosurgeon and CK practitioner (arguably the most experienced CK practitioner in the world). For CK, you can probably do no better than to go to Stanford.

Good luck!

Best wishes,
TW

[Tumbleweed]

One other thing regarding the ABR test I'll add to my preceding post: even if your ABR test shows a severely weakened hearing nerve, CK or GK might still save your hearing. (This has been true in my case.) But conversely, a poor ABR test result is a strong indication that any approach to microsurgery (including retrosigmoid or middle fossa) is likely to result in SSD.

FWIW, I think you're on the right track looking into radiation treatment. Why give up your hearing on your AN side when it is currently very good? Also, the mild numbness in your face indicates the tumor is already beginning to affect your facial nerve (which is located just above the vestibulocochlear nerve the AN is presumably growing on). The fact that you already have mild facial symptoms put you at far greater risk for facial paralysis with microsurgery compared to with any form of radiation treatment. I strongly urge you to ask each doctor (Brackmann, Lunsford and possibly Chang) to quantify your risk of facial paralysis post-treatment in percentage terms. I fully expect your risk with microsurgery will be greater than 30% and with GK or CK less than 5%.

Best wishes,
TW