Author Topic: Had consultation at HEI today.  (Read 9822 times)

loose screws (tightened)

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Had consultation at HEI today.
« on: September 30, 2009, 10:30:31 pm »
I met with Dr. Brackmann. Very nice man. The consultation started off with another Dr.(Erskin I think)  asking me about my history and how I ended up there. After a quick balance test ( just like a sobriety test) and an even quicker hearing test with a tuning fork he asked if I had any questions. He answered some and said Dr. Brackmann would answer the rest.

In came Dr. Brackmann, what a busy guy. He explained in detail with my MRIs what was going on in my head. Then told me that with the size and location of the tumor would it best to remove it using the middle fossa approach. He explained that the angle of approach would be better with middle fossa and it gave me the best chance to preserve my hearing. Made sense to me.

I asked him about other options of tumor removal and he said he also does Gamma Knife surgery but he would not recommend that for someone my age (47). He prefers to do that on older patients.

The one thing that caught me off guard was his description of what would be done during the surgery. I've had some brief balance issues since April when I first started noticing that somethings not right.  I had 1 1/2 days of being really dizzy to the point of my wife making me go to the doctor. Other than that maybe 10 other times I'd get dizzy for just a second or two.
Dr. Brackmann said it would be necessary to cut the nerve for balance explaining that if one nerve "sputters" it can cause balance problems even with the good nerve on the other side. Can anyone comment on this?

Maybe it's necessary to cut that nerve to remove the tumor, I don't know. I would hate to sacrifice a functional nerve. Does anyone have something they can tell me about this?

Thanks
Mike
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

sgerrard

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Re: Had consultation at HEI today.
« Reply #1 on: October 01, 2009, 12:50:07 am »
Mike,

Most acoustic neuromas start on the balance nerve, hence the technical name vestibular schwannoma. It is pretty much a given that with AN surgery the balance nerve will be lost, since the the tumor is firmly planted in it. Some people find that they lost the nerve function before surgery, and have already adjusted; others take a while after surgery to compensate. In most cases, though, the brain re-learns to work with just one balance nerve, along with the eyes and legs, to establish pretty good balance. No tight rope walking, however. It is the case that half a balance nerve is worse than none, you don't want scrambled balance signals coming in.

I met Dr. Brackmann at the Symposium. He is a great surgeon, but he is not a radiation oncologist. His view that radiation is for old people is outdated, in the opinion of doctors with far more experience in radiation oncology than he has. Age should not be the reason to take a pass on radiation treatment. He is a serious pro at doing middle fossa, so that would seem like the best way to go if you are going to do surgery.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: Had consultation at HEI today.
« Reply #2 on: October 01, 2009, 05:42:16 am »
I asked him about other options of tumor removal and he said he also does Gamma Knife surgery but he would not recommend that for someone my age (47). He prefers to do that on older patients.

Hi Mike. Glad the appt went well.....   They do have a group at HEI that does do GK on AN patients. I, personally, don't know of any patients treated with GK there but would be curious about that as well.

As for the comment I highlight here..... FAR too many of us that had radio in our 40's and younger and doing fine.  At this past summer's symposium in Chicago, we even had a young woman (on this site as Taylor), who's been through a very very difficult AN journey... and had radiation (CK) the week before the symposium. She's only 21 and she's doing fine.

Please keep us updated as to your progress in your research... and hang in there. I know the info overload can be very tough, so hang tough.

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

leapyrtwins

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Re: Had consultation at HEI today.
« Reply #3 on: October 01, 2009, 06:15:17 am »
Mike -

I agree with both Steve and Phyl.  My AN was larger than yours, and I was given the option of GK or surgery (my neurotologist does both procedures) and I was 45 1/2 at the time.  Dr. Brackmann has a reputation as a great surgeon - that is his speciality and he's very good at it.  But as Steve says, he's not a radiation oncologist.  IMO you should talk to a doctor about radiation, before you make your treatment decision.

If your hearing is still good, mid fossa would be the best surgical approach for you.

As for the balance nerve, yes, it's usually cut during surgery.  The body does learn to compensate over time - everyone recovers at a different rate, but it generally doesn't take too long.

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: Had consultation at HEI today.
« Reply #4 on: October 01, 2009, 07:00:31 am »
Mike .....

Just wanted to echo what Steve said about balance (vestibular) nerves.  Because the tumor grows slowly, originating from the outer covering cells of the vestibular nerve, one's balance is affected at different rates.  Many times the brains of AN patients have already begun compensating by using the other good vestibular nerve on the opposite side.  The problem comes when the tumor affected nerve begins to send erratic signals and the brain does not know what to do with it.  Often the removal of the poorly functioning nerve actually is better because the brain then knows to use only the good signals from the healthy vestibular nerve on the other side.

To be fair, the time it takes anyone's brain to adjust varies greatly, depending upon the way the tumor has grown over what period of time; temporary swelling post-op (or post radiation, for that matter); and amount of damage to the nerve pre-treatment.

Best wishes.

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

ilsemor

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Re: Had consultation at HEI today.
« Reply #5 on: October 01, 2009, 01:17:23 pm »
Mike - I had my surgery at HEI and surgery was also the recommendation because of age and not knowing what the long term consequences can be of GK.  It would be interesting to know how many people go to House and they're told to do GK.  Anybody there?  I also went to a support group where I met people who had GK and are in my age range (40ths) and they had it done at Cedars and UCLA and they were both very happy, one of them had it done ten years ago and mentioned the biggest problem she has to deal is with titinus all the time (day and night), you might want to do more research on that, cause I would think that's another hard one to live with for the rest of your life.

Tumbleweed

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Re: Had consultation at HEI today.
« Reply #6 on: October 01, 2009, 02:03:15 pm »
Hi, Mike:

I'll echo what Steve and Phyl have said: age is no longer considered a factor by doctors who treat with radiation. Statistics show the trend is increasingly toward treating ANs with radiation, due to the comparable results, shorter recovery period and virtually non-invasive nature of radiation. A recent survey of neurosurgeons revealed the majority would personally choose radiosurgery if they had an AN themselves.

All that said, there are many reasons to have surgery instead of radiation, large size and close proximity to the brainstem being a couple, and personal preference (some people don't want a dead tumor in their head; they just want it out) being another.

Like you, I was nervous about having my vestibular nerve cut on my AN side. Although many people compensate for the loss, I'd heard some anecdotal stories of people who didn't and suffered chronic vertigo afterwards. My problem with cutting the vestibular nerve is there is no guaranteed outcome and you can't go back once it's done. Of course, the same can be said about radiation, and the longterm effects are what worry some doctors enough (including Dr. Brackmann) to recommend against it for young people. You just need to choose your poison.

As far as I know, there are no verified cases of malignancy resulting from radiosurgery (GammaKnife, or GK) or radiotherapy (CyberKnife or CK, and standard fractionated stereotactical radiosurgery or FSR). GK has been practiced for over 40 years in the US. You will be 87 forty years from now. CK is very similar to GK (the main differences being  CK offers a slightly better chance of hearing preservation, splits treatment into multiple doses, is totally non-invasive, and delivers a more homogeneous dose of radiation throughout the tumor).

I recommend you get at least three opinions before choosing which treatment to have: one from a surgeon (which you've already had), one from a CK practitioner, and one from a GK practitioner. Also consider getting an opinion from a doctor treating with standard FSR (FSR is considered to be a little less accurate than CK and GK, but many forum members have had outstanding results with it). The only way to form a really valid opinion for yourself is to get these multiple perspectives (along with their attendant biases) from doctors who use different approaches. By the time you hear from all the professionals, you will have a gut feeling which treatment is best for you.

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

Jim Scott

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Re: Had consultation at HEI today.
« Reply #7 on: October 01, 2009, 02:12:29 pm »
Mike ~

I was pleased to learn (from your post) that you had a satisfactory consultation with the famous Doctor Brackmann at HEI.  I hasten to agree with Steve and others that have commented on the radiation/age issue.  Despite his warm personality and expertise in AN removal surgery, Dr. Brackmann's ideas about radiation are a bit outdated and don't reflect the current state of irradiation technology, which can administer relatively 'low-dose' streams of radiation very precisely and avoid the old-style 'shotgun' approach that could cause the radiation beam to damage brain tissue and functioning nerves.   The concern regarding long-term effects of radiation administered in this modern manner have been essentially obviated.

The solid information you've received in posts previous to this regarding the cutting of the AN-affected 8th cranial (balance) nerve are correct and need no further explanation from me, except to reiterate the points made, i.e. that it's normal and preferable to cut this nerve during surgery.  

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.

route66

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Re: Had consultation at HEI today.
« Reply #8 on: October 01, 2009, 05:09:51 pm »
Tumbleweed,

Can you reference your survey that supposedly indicates that neurosurgeons prefer radiation treatment?  The most recent survey I have seen, and the one posted on the University of Pittsburgh's own radiation based website, indicates that neurosurgeons themselves prefer surgical treatment to radiation treatment if the tumor extends outside the canal.  Thanks.

Keeping Up

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Re: Had consultation at HEI today.
« Reply #9 on: October 01, 2009, 08:00:53 pm »
Hey Loose Screws

I have yet to say welcome - but do remember your call sign.

I don't come by as often I use to (I have four small children, and work, and thankfully only have a small tumor).  However, I randomly pop back up and suggest 'how about just watching and waiting'.  I have an editorial done by the senior team lead at my hospital ... his analogy - presentation to large group of neurosurgeons, describe the scenario of a 50 year old male, small tumor - what would you the surgeon recommend.  As expected, they all said surgery (again, it was a surgical crowd).  

Tables turned a bit ... with 10  year research presented showing that only 30% of small tumors (intracanicular <2 cm CPA tumors) show growth over that 10 year period and ultimately need treatment.  Of those that do chose treatment the outcome is no worse than those who sought treatment immediately (save hearing decline).  The scenario was presented again -  the same 50 year old male, who happened to have a few kidlets still at university, in prime earning years, and a big mortgage and most importantly THEY WERE THE PATIENT ... the majority switched to watch and wait.

Something to ponder and ask your physicians.  

Good luck with your decision.  I am 37 years old, losing my hearing on the one side (slowly) and am hoping the odds (almost 70%) say I can delay treatment for 10+ years without being any worse off than pursuing treatment now.   (I don't buy the 'delaying the inevitable' theory at all.  I don't pre-pay future taxes either!)

Will also admit - utterly shocked House doesn't have a common protocol on radiation versus surgery.  I don't necessarily believe radiosurgery is safe 20-30 years down the road (do believe, 2-5 years out I would be fine ... with likely hearing loss of course!).

Ann
« Last Edit: October 01, 2009, 08:10:12 pm by Keeping Up »
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

Tumbleweed

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Re: Had consultation at HEI today.
« Reply #10 on: October 02, 2009, 05:42:16 pm »
Tumbleweed,

Can you reference your survey that supposedly indicates that neurosurgeons prefer radiation treatment? 

Alas, I cannot find this. I searched all the documents and links related to ANs I had saved on my computer, but couldn't find this particular survey. The last time I read it was over a year ago.

Sorry,
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

Zanybrainy

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Re: Had consultation at HEI today.
« Reply #11 on: October 07, 2009, 06:31:55 pm »
I had surgery to debulk at larger an and now it has begun to raise its ugly head so I am going to a radiologist. His statistics were very interesting as far as hearing preservation.  The odds were very good.  I was almost 53 when I had surgery and mine was over 4cm with brainstem involvement, so I did not have the option of radiation. I lost my hearing totally on the rightside and while my life is great, the hearing loss can be a little annoying.  After looking at the statistics, if I was eligible I would consider. Just remember there is life after whatever treatment you chose. Blessings, Cath
Retrosigmoid, January 24, 2005
4 cm "stuck" to brainstem
Memorial Hospital, Colorado Springs

lori67

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Re: Had consultation at HEI today.
« Reply #12 on: October 08, 2009, 11:56:14 am »
Hi Loose Screws!  (love the name, by the way!).

I had my balance and hearing nerve removed and I've had no problems.  Well, obviously, the hearing loss, but balance-wise, I'm good.  Your body usually does a pretty good job of compensating for the lost nerve.  If you've already had some balance issues, chances are, your body is already starting to pick up the slack on the good side.  Your doctor will probably do a balance test at some point to see the level of involvement there is on your AN side.

In my case, my balance nerve was only functioning at about 40% prior to surgery, so my body compensated quickly after surgery and I've never had any major balance issues.  I can ride my bike, climb ladders and do other dangerous things that make my family nervous.  :D

I hope you get all the information you are looking for so you can make a decision you're comfortable with.

Good luck!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

loose screws (tightened)

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Re: Had consultation at HEI today.
« Reply #13 on: October 09, 2009, 09:00:19 pm »
Thanks for your reply Lori & everyone else. I'd like to have a balance test like you had to where they could give me a % of balance loss. My job requires climbing ladders and general good balance. My lifestyle demands even better balance. Surfing, skateboarding, hiking are just a few of the things I do that require better then average balance.

I've come to the conclusion that surgery is for me. Fortunately living in So Cal and having the House Ear Institute and Dr. Brackmann right down the road I feel very fortunate after being diagnosed with AN.

I'm still waiting to schedule my surgery. Things have been pushed back a week so I should know next week.

Thanks everyone 
Mike

47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

Tumbleweed

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Re: Had consultation at HEI today.
« Reply #14 on: October 12, 2009, 09:11:41 pm »
Mike, you'll be in terrific hands with HEI and Dr. Brackmann. Please keep us posted. And best wishes for a speedy recovery!

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

 


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