ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: loose screws (tightened) on September 30, 2009, 10:30:31 pm

Title: Had consultation at HEI today.
Post by: loose screws (tightened) 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?

Title: Re: Had consultation at HEI today.
Post by: sgerrard on October 01, 2009, 12:50:07 am

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.

Title: Re: Had consultation at HEI today.
Post by: ppearl214 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.

Title: Re: Had consultation at HEI today.
Post by: leapyrtwins 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.

Title: Re: Had consultation at HEI today.
Post by: CHD63 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.

Title: Re: Had consultation at HEI today.
Post by: ilsemor 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.
Title: Re: Had consultation at HEI today.
Post by: Tumbleweed 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,
Title: Re: Had consultation at HEI today.
Post by: Jim Scott 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.  

Title: Re: Had consultation at HEI today.
Post by: route66 on October 01, 2009, 05:09:51 pm

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.
Title: Re: Had consultation at HEI today.
Post by: Keeping Up 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!).

Title: Re: Had consultation at HEI today.
Post by: Tumbleweed on October 02, 2009, 05:42:16 pm

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.

Title: Re: Had consultation at HEI today.
Post by: Zanybrainy 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
Title: Re: Had consultation at HEI today.
Post by: lori67 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!
Title: Re: Had consultation at HEI today.
Post by: loose screws (tightened) 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 

Title: Re: Had consultation at HEI today.
Post by: Tumbleweed 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,
Title: Re: Had consultation at HEI today.
Post by: CHD63 on October 13, 2009, 08:11:18 am
Mike .....

Glad you have made a decision.  That is a big hurdle.  You will be in good hands with Dr. Brackmann.

Re:  the balance test ..... although you could ask for one now, it would not be of much value until after you have recovered from surgery since things will change somewhat.  Many AN patients have little balance issues post-op because their brains have already been compensating for a poor or non-functioning vestibular nerve.  However, many others have significant balance problems post-op until their brains adjust to having only one vestibular nerve.  Because of your line of work, you may want to ask now about vestibular rehab following surgery so that it is already in place.

My situation is more unique than most because I have no vestibular function on either side.  I spent months in vestibular rehab with great success.  I have climbed ladders to paint but only very carefully (in my case).  You should be able to resume your normal work once your brain adjusts.  Walking and vestibular rehab speeds up that process.

Be sure to let us know when you are scheduled for surgery.

Thoughts and well wishes.

Title: Re: Had consultation at HEI today.
Post by: loose screws (tightened) on October 13, 2009, 09:47:03 pm
Thanks TW. Clarice; Unique is an understatement. The thing that scares me more than anything is having only one functioning vestibular left out if fear of, if something happens to the other vestibular I won't be able to walk or do anything. Well you just told me otherwise. I didn't think it was possible to balance without a functioning vestibular. Wow, I learned something today. Come to think about it I've learned a lot since being diagnosed.

Thanks Clarice
Title: Re: Had consultation at HEI today.
Post by: Cheryl R on October 14, 2009, 09:14:44 am
Mike, I am another no balance nerves due to being NF2 and surgeries on both sides.   My last surgery was that other side time and will be 18 mo ago Sat.   I was very nervous before it as was not sure how much problem I was going to have.     I had asked if one has ever compensated already and got no answer from my dr.    I surprised myself and everyone by getting up and walking like I had never had surgery.     Inside I am ok but outside do have some issues.       I have more problem with walking outside in the large open areas for long times. The all day at our state fair isn't as fun anymore.      Anything slick is a real problem but since you live in Calif you may have less winter issues than the midwest.       The dark is a problem too. Also areas with slick shiny floors.   So anyway one can have a decent outcome but think it varies just like those with the one sided balance loss.            The odds are that it won't happen to you!                                     Cheryl R
Title: Re: Had consultation at HEI today.
Post by: loose screws (tightened) on October 14, 2009, 01:42:04 pm
Cheryl R, sorry to read about your loss of both balance nerves. On the bright side it does look like your getting around good especially if your able to go to the state fair. You didn't happen to stare at one of those rides that spins upside down while your standing did you? I get dizzy watching those. I guess I just won't worry about things like that now. Actually I could say it's more of a what if concern then a worry. Thanks for reply.

Cheri, Dr. Brackmann recommended the middle fossa. I just quickly read through your thread,very interesting. You got the video of your surgery? Thats cool I wonder if they do that for all surgeries? I'd like to have one. Congrats on your 1 year post.

Title: Re: Had consultation at HEI today.
Post by: Cheryl R on October 14, 2009, 02:36:08 pm
Mike, I am a good worrywart and did find in time that the  "what if" was a good way to put things and realize that most don't happen.        Occ it does, like finding out I had NF2 which is rare and was not until I was an older adult also.         
    I don't think I would like looking at such a carnival ride.         Even walking thru the carnival area is interesting as it is always crowded and have different hoses and lines taped to the ground so you have to be very careful walking even with a decent balance.    Plus noisy to boot!     Lots of noise is not our friend anymore but you put up with it anyway. 
               Life does go own and you just have to see what the annoyance of the day is going to be!              Cheryl R
Title: Re: Had consultation at HEI today.
Post by: Mickey on October 14, 2009, 04:03:48 pm
Hey Mike! Seems like your AN as small but bothersome. You are a young man and Although I am W+W I definately support your decision. Alot of good choices with today`s technology so why not get rid of the bugger at an early stage. In my case 15 years older I`m hope my little friend has reach maturity. Best Wishes, Mickey
Title: Re: Had consultation at HEI today.
Post by: alicia on October 14, 2009, 10:17:03 pm
Hi Mike - I am chiming in very late, but I wanted to be another House Alum that reassured you that you are in good hands.  The first few weeks of the diagnosis are tough - then you realize this is just the next thing you have to cross off your "to do" list!  It definitely slows you down for a bit, but it makes you appreciate everyting that is right in front of you!  Keep asking questions and take a deep breath!  Alicia
Title: Re: Had consultation at HEI today.
Post by: kristin on November 15, 2009, 08:09:09 pm
Hi Mike,

I'm posting this on the eve of your surgery, so I don't know if you'll get it or not..

I had my left vestibular nerve cut too as my tumor was all around it. I woke up in ICU very, very dizzy (it made me sick). They tried to get me to sit up and I thought I was going to fall on the floor. But...that got better and by that afternoon I was able to sit up and the next day I could walk (with help) and not feel like I was going to fall over. My surgery was on a Thursday and I was discharged by Sunday and went to a Mariner's/Angel's baseball game on Monday!! (with a TON of help!) My surgery was in April and that summer I tried playing softball. I could hit ok...but when I ran it felt like the earth was shifting. I was afraid of the ball when it was hit to me as it moved so much I couldn't see which one was the real ball. But...after time, it got better! And by the end of the was almost back to normal.

My biggest problem is when it's dark and I can't see. My doctor told me that balance is a combined effort of three things....sight, inner ear & the vestibular nerve. If it's dark and I happen to lean my head to the side or have a cold or something....I go way off balance. I think that can be helped with vestibular rehab though.

I think you will be just fine! :)

Title: Re: Had consultation at HEI today.
Post by: Jeff on November 16, 2009, 07:48:51 am
I have nf2 and have had tumors removed on both sides. Thus, both cochleas are gone and both balance nerves severed.I can still walk, but have to be careful in darkness or on uneven terrain.

As I understand it, balance stems from sight, feel, and our internal balance mechanism. Loss of one facet causes us to rely on the others.

I have had three surgeries at St. Vincent. My brother sees Dr. B and likes him well. I see Dr. Friedman, who is great.

Please know that loss of both balance nerves does not mean that you won't be able to walk. I can even run.

Please takr care,