Newly Diagnosed with Questions

[Curt]

Hello everyone.  I'm writing for a friend of mine who has just been diagnosed with AN.  The tumor is a bit bigger than a pea. (Sorry I don't have the precise measurements.) She's been having a lot of symptoms - balance issues, some loss of hearing in the affected ear, even vision problems. I've been lurking here for a few days, and appreciate the wealth of information you people give here, and more importantly, the empathy you show. 

She is going to the Michigan Ear Clinic next week for her first appointment with a Neurosurgeon. I've sent her the questionnaire from Acoustic Neuroma World, but you all here might be able to provide insight on a couple of questions:

1) Given the fact that she's showing symptoms that interfere with her life, she will most certainly either have surgery or radiotherapy.  She is 24 years old, and in otherwise great health, and the tumor is relatively small, but whatever option she decides on, she will be dealing with the results of it for the rest of her life. For those of you who have surgery, do the consequences "clear up" over time (other than the pre-existing hearing loss), and for those who have had radiotherapy, when do the symptoms you exhibited prior to surgery diminish (as the tumor shrinks)?

2) I am urging her to get a second (or third, or fourth) opinion before making her final decision. There's a list on the AN World website of centers/physicians who provide free consultation after they receive the person's medical records and MRI.  Most of these look like they are exclusively in the surgery or radiotherapy camps. Is there a center or physician (free or at cost) that you believe would provide a recommendation based on the particulars of her case, and not on the bias of their own treatment preference?

Thanks for what you do here.  I wish I had known about this site before. My father had AN, and after 10 years of "wait and see", they finally had to operate, even though he was 85 years old. He never really recovered from the surgery and died 2 months later.

[leapyrtwins]

Curt -

I had surgery on 5/31/07 and my side-effects "cleared up" over time except for SSD (single-sided deafness); it probably took about 3 or 4 months for everything to get back to "normal".  I was old enough to be your friend's mother (45) when I had my surgery 

My AN was larger than your friend's; about the size of a golf ball.  I chose surgery to remove it, but your friend should investigate all her options and decide what is right for her.  If her AN is approximately the size of a pea, she may decide that radiation is a better treatment choice.  I highly recommend contacting the ANA and asking them to send her information - they have some excellent brochures that she will find are very helpful.

I don't know anything about the "list" on AN World (never been there), but I believe the ANA has a list of physicians on this website that you might want to check out.  In addition, others on this forum may be able to point you in the direction of doctors in Michigan, or other states close to you, who treat ANs. 

My neurotologist, Dr. Robert Battista, (Ear Institute of Chicago) does both surgery and radiation, and I am very happy with him and my results.  In fact, I am having BAHA surgery with him on March 4th.   I don't know if he offers free consultations or not, but he can be reached via email through his practice's website www.chicagoear.com

The best of luck to your friend.  Please keep us posted on her progress and feel free to stop in here any time with questions,

Jan

   

[4cm in Pacific Northwest]

Curt,

When I was doing my research for surgeons I was willing to fly anywhere in the USA or Canada for a good and reputable surgeon.

This Michigan State surgeon was brought to my attention
“Dr. Jack Kartush�
http://www.michiganear.com/about/jkartush.html

I had the privilege of talking to a patient who had her surgery with him 10 years ago ...and is actually now teaching high school again with great success… and had a very short recovery time. A decade later she is still highly functional…

I also wrote to Dr. Kartush, sent him my MRI CD and spoke with him at great length on the phone. I also bought one of his research papers - which I found to be very interesting.

Dr. Kartush actually has the patent on the facial nerve probe used in AN surgeries today. His big ‘claim to AN fame’ is his success of preserving facial nerve function while removing AN tumors. However he advocated doing it over numerous successive surgeries rather than all at once. Because of my age and that I had already had a major (non-AN related) surgery this year I chose not to go with his approach – however if I was younger I might have. Some surgeons agree with his new successive surgical and post surgery radiation approaches… and some think he is “way out there� (your friend will have to discern for herself.)

I suggest since your friend lives in that state (this was also why I did not personally go to see Dr Kartush as he is geographically too far away for me) - that she check out the Michigan Ear Institute and Dr. Kartush specifically. He is well versed in all surgery approaches - plus radiation.

Remember that typically AN tumors are very slow growing so your friend does have time to research and weigh out ALL her options- especially if it is still at the “pea size� stage.

Good for you for helping her out.  Having a good support system can make all the difference in the world to AN patients.

Keep moving forward.

4

[sgerrard]

Hi Curt,

You have lots of good questions packed in there.

You are right, most practitioners will be in the surgery or the radiation camp, because that is what they do, and it is difficult to stay current in both.

Dr. Chang at Stanford is a neurosurgeon and practices CK radiation, but I suspect he leans to radiation for most smaller ANs, unless there is a serious balance nerve issue. If you email him, he will likely agree to have a look, if you can send a CD of the MRI and hearing test reports. You can reach him through cyberknife patient support website:
 http://www.cyberknifesupport.org/about_the_doctors.html.

Although House Clinic is famous for surgery, they do have radiation there as well, and also offer free consultations. They will probably recommend surgery because she is only 24, and they don't like doing radiation on younger patients. I think they prefer to see the actual MRI films. The site is
http://www.houseearclinic.com/index.htm. 

Though neither one is "perfectly neutral", they are two of the best, they give free advice, and it can't hurt to have their opinions.

As for symptoms clearing up, I think it is fair to say that facial issues, including the eye, can take months to resolve; hearing loss is usually for good, you just hope not to lose more if you do a treatment that tries to preserve it; balance issues depend on what's going on and what treatment you have. It is probably fair to say that no matter what she does, the first six months after treatment will not be ordinary months.

Best wishes to you both,

Steve

[Kate B]

Hi Curt,

Welcome to the site.  With a pea size tumor many options are open to her. 

It has been my experience that albeit centers recommend other treatments, they tend to favor certain ones.  Let's face it, no matter how compassionate the individual, it is the way they earn their living. They also believe in it. Because of that, I chose to contact centers known for specific treatments. I wanted the "experts" known in an area giving me their opinion.  In other words, in their world,I wanted to be a "run of the mill" patient.

I agree with seeking multiple opinions. I sent my MRI's to John Hopkins  for FSR and House for surgery. I also consulted with UPMC (Dr.Kondziolka) about Gamma Knife.  Each time it gave me new information.  My tumor was 1.5 cm and every option was open to me.  They all told me I was an excellent candidate  for their particular treatment. That is when I put together "A Guide Through the Decision Making Process".  http://anausa.org/forum/index.php?topic=5786.0   It boils down to several key decision points that are individual to your friend's age, tumor size, etc...There is no one perfect treatment. The good news is that there are several viable options for treatment.

I am very familiar with www.anworld.com.  It was put together by four patients who chose different treatment paths.  As with any site, it is to assist you as you gather information.

Kindest Regards,
Kate

[Kate B]

I don't know anything about the "list" on AN World (never been there), but I believe the ANA has a list of physicians on this website that you might want to check out.  In addition, others on this forum may be able to point you in the direction of doctors in Michigan, or other states close to you, who treat ANs. 

My neurotologist, Dr. Robert Battista, (Ear Institute of Chicago) does both surgery and radiation....
Jan
   

Jan,
YesterdayI checked out the list on the ANA website.  When I clicked on Illinois,there was a doctor that I never have heard referenced. (doesn't mean he is not formidable)  I had to search in the alpha list below to find Wiet, Battista and Leonetti.  I also read the disclaimeer on the ANA  page and basically a doctor pays an administrative fee to be there. In other words,it is not an endorsement.  Interesting for sure.

The AN world website was put together by patients each having taken different treatment paths in an attempt to be balanced.  Those listed on that page are ones recognized by patients as well known for treating AN's. No fee is paid.

FYI...
Kate

[leapyrtwins]

Kate -

thanks for the FYI, however, I am not currently seeking a doctor to treat my AN.  It's already been treated to my satisfaction.    I was just passing along information about a doctor whom I highly respect and who I feel did an outstanding job for me, in the hopes that it might possibly help Curt's friend.  That's one of the great things about this forum, patients passing along information to each other.

I am aware that the ANA does not endorse doctors, and as you point out, their disclaimer says just that, but I'm not sure why you find this interesting.

It makes sense to me that the ANA charges an administrative fee - they are a non-profit organization.  It also makes sense to me that the ANA doesn't "endorse" doctors - they are a patient resource, and they offer support and information, not medical services.  IMO, part of their role is to remain neutral when it comes to treatment choices and doctors who perform those treatments.  In fact, I think I read a disclaimer for this discussion forum that basically states that the opinions of the members are not "endorsed" by the ANA.  If I didn't read it anywhere, maybe it was just Phyl, or Joef, or another moderator pointing it out to us.

While it's commendable that the AN World website lists doctors recognized by patients as well known for treating ANs, I'm sure if we asked the patients on this forum about the doctors listed on the ANA list, we'd find the same thing.  Just because the ANA accepts fees, doesn't mean the doctors on their list are not recognized by patients as outstanding doctors.

BTW, if you look on the ANA list under "groups" you will see Wiet and Battista listed under Ear Institute of Chicago.  I'm not sure if Leonetti is listed there with a group or not; I didn't look.

Kindest Regards,

Jan

[Jim Scott]

Hi, Curt:

You seem to be on the right track regarding information-gathering and helping your friend decide on a treatment for her AN.  I admire your very practical approach to this medical problem.  Your friend if fortunate to have your help. 

I had a large tumor - pressing on my brainstem -and had no choice but to have surgery.  However, the neurosurgeon - who had been operating on acoustic neuroma tumors for over 30 years - was very enthusiastic about a relatively new procedure where he debulked the tumor (from 4.5 cm down to around 2.5 cm) to make it amenable to radiation.  In my case, FSR.  As he described it: the debulking reduces the size of the tumor and cuts off it's blood supply and the follow-up radiation kills the tumor's DNA.  Eventually the tumor 'dies' and in time, disappears.  My surgeon also employed nerve monitoring during the surgery to help him avoid cutting or disturbing vital nerves.  The result was that I came through the surgery just fine and recovered rapidly.  Almost no real complications ensued.  After a 3-month 'rest period', I underwent 26 fractionated stereotactic radiosurgery treatments (very low-dose radiation specifically 'mapped' to 'hit' only the remaining tumor and spare nearby brain tissue).  I had no complications during or after the FSR sessions.  I did have some residual swelling for a few months afterward but that eventually subsided and my last two MRI scans showed tumor necrosis (cell death) and shrinkage.  I have to state that this method certainly worked well for me.

I'm sorry your father did not survive his AN surgery but I'm a bit surprised a surgeon would operate on someone that age (85) as the surgery is quite stressful to the body.  I was 63 and in excellent health when I underwent the surgery but I can't imagine my neurosurgeon - who is very conservative - would have operated on me if I had been 20+ years older.  In your friend's case, I suspect she'll be a good candidate for radiation but, as others have noted, some doctors have biases against anything but surgery or radiation, depending on their preference.  Fortunately, my neurosurgeon was open to whatever 'worked' best for his patient.  Like many excellent neurosurgeons, he seems to be little-known outside of the state (Connecticut) but he is a member of ANA (he volunteered this information when I mentioned the association) and a fine, experienced and skillful surgeon.  I feel blessed to have him and highly recommend him to anyone in the area.  I hope your friend can find a similar doctor to treatr her.  They're out there but not always easily found.  That's why we share 'doctor information' when we can.  While one patient's experience won't necessarily be exactly the same as another, we can offer our personal experiences and you can be assured that we are not doing so for anything other than a desire to help other folks in the situation we were once in. 

Please stay connected here and let us know how your quest for information and a doctor you and your friend can feel confident with is going, as well as what treatment she ultimately chooses because, we care. 

Jim

[Curt]

Thanks to everyone who responded so promptly and with great information. My friend sends out her heartfelt thanks too.  This is truly a caring community.  I'll try to respond to each of you:

4 CM - Dr. Kartush practices at the Michigan Ear Institute, where my friend has an appointment on Wednesday. Thanks for the heads up about him.

Jan - Chicago is very close to Michigan, and your team may well be worth checking out.  Thanks for the recommendation.

Steve - Given my personal preferences (which combined with $2 buys a cup of coffee since it's not me) I appreciate the advice about Dr. Chang.

Kate -  Thanks for everything, here and offline. :-)

Jim - I appreciate your kind words about my father. Just so you know, and others who might be reading, surgery was a last resort. He was diagnosed with AN when he was in his early 70's, and even though he lost all his hearing, they decided to "wait and see".  The tumor started growing at an alarming rate when he was 85, causing facial paralysis and vision/balance problems. He had kept up with his MRIs, but it suddenly grew by 1/3 in 6 months. By that point surgery was the only option; one of the surgeons said he'd be dead in a year without it.  But of course at that age surgery is always a crap shoot. If I knew what I know now, I would have urged him to have radiation as soon as he was diagnosed, assuming that at that time the AN wasn't so large for that not to be an option.

I would like to ask a couple more questions:

1) Is the Cyberknife a refinement of the Gammaknife, or a whole different technology? It appears they are both "single dose" treatments.  If so, what are the differences, if any?  I realize no one here is an expert, and since your opinions probably aren't peer-reviewed, I'll treat them all as hearsay. :-)  KIDDING!!
2) Do either surgery or radiation treatments result in not being able to travel by air after the respective procedures?  If so, this could preclude looking at some facilities or providers.

Thank all of you again.  God Bless.

[ppearl214]

Hi Curt and welcome. As you can see, everyone is sharing and that is what we are all about. I'm glad you are able to share with us as well.... and I'm sorry that this is part of your life again.

This link may help re: Cyberknife as many of us that had it done have shared our experiences:

http://anausa.org/forum/index.php?topic=3929.0

Depending on the type of growth, location, etc, CK can be done in 1 dose, 3 doses, 5 doses.  Consultation with the radio-oncologist by your friend would be utmost key... but by doing it in "fractionated" days,  one of the key reasons is to help with hearing preservation as well as minimal radiation "hit" of surrounding normal tissue/structures.

There are also many threads in the "Radiation/Radiosurgery" discussion forum that may also help answer questions about the different forms of AN radiation treatments and outcomes. May be worth a peek.

it's good to have you here... and again, welcome.

Phyl

[Dana]

Hi, Curt,

Just a little additonal info/experience: 

-- Unless your friend has trouble as an airplane passenger now (perhaps because of balance problems), I don't think she'd have problems after radiation 'surgery'.  Don't know about after microsurgery.

-- I had Gamma Knife on 1.6cm AN.  (58 years old).  My understanding is that Cyberknife is the newer technology that pinpoints tumor even more precisely than GammaKnife.  On the other hand, GammaKnife has been around longer ... originated in the '60's I believe, used regularly since the '80s.  Whereas Cyberknife is newer.  So it's sort of the classic decision between "latest technology" and "used on more people".  Steve had Cyberknife and knows alot about this debate.

-- My symptoms were and are unilateral hearing loss (but not complete hearing loss), imbalance and tinnitus.  My GammaKnife was July 2007 and symptoms have remained the same.  What I want to communicate is that I don't expect them to necessarily IMPROVE; I'll just be happy if they stay the same.  It isn't expected that radiology will SHRINK the tumor, only that it will KILL the tumor so it doesn't grow. 

-- I have no experience with the vision problems (...well, I have horrible eyesight, but that doesn't have to do with the AN !!).  If I did, that would be a major concern and I'd seek out opinions on best way to cure or at least halt those problems.   I do know that the facial problems can be a direct result of the AN itself and/or a negative result of microsurgery, although I would say unequivocally that any good AN microsurgeon is going to use facial monitoring equipment and personnel DURING SURGERY to do the best he/she can to NOT cause facial problems.  I think it's fair to say that everyone here would agree with that statement.  I don't know if your friend's eye problems are related to eyelid problems, but those seem to be some of the most irksome of the facial problems.

-- My two cents:  as you've noticed, there's a tendency toward recommending microsurgery over radiation for younger folks because of the possibility that radiation might cause other problems decades later.  I really think your friend needs to proceed according to what her "gut" tells her about this .... people have been having radiation via GammaKnife for 30-40 years now, and I've seen no reports of additional tumors arising.  If your friend has a great fear that radiation might be bad decades down the road, then she should follow that gut feeling.  But if her intuition is that it won't cause problems, then I'd tell her to discount that argument.

--NOW I do want to say I'm very 'prejudice' toward radiation 'surgery' because I think it's SO much easier on the body, BUT that's me and my experience with others in my family having brain microsurgeries.  So please take that into account when considering what I say! 

Well, that's my two cents.  I hope your friend is able to take some deep breaths and consider all her alternatives patiently.  I think most of us struggle and feel overwhelmed by it all, but ... when we come to our decision, we KNOW it's the right one.  Your friend is very lucky to have a friend who will help her sort through all the info, so she can come to the decision that makes sense for all her factors, rational "factual" ones as well as subjective ones.

My best,
Dana

[leapyrtwins]

Curt -

I was told by my doctors not to fly until 6 or 8 weeks post op; I can't recall which.  But I just checked their website and it says to wait a minimum of 4 weeks.
   
I don't know if all doctors follow this though, because I know a lot of people travel to HEI and I'm sure they don't all wait 4-6 weeks to fly home.  Maybe someone who traveled a distance for surgery can tell you their experience.

Jan

[Kate B]

Hi Curt,

I traveled by air two weeks after surgery at HEI.  If your trip is longer that three hours,that is the preferred way to travel according to HEI.  Because it is your inner ear, it is not a  problem.  When there is trouble flying, it is when a person has middle ear issues.

When flying back to Chicago, I requested a wheel chair. Both LAX and especially Chicago, have long distances to walk.  So that was the one time I decided to take advantage of the assistance. I remember thinking it was strange to be wheeled around the airport.

I hope that helps.

Thank you for reformatting my chart to show the headings on each page. I appreciate it

Kate

[OMG16]

My son had microsurgery out of state and was told he could fly 1 week later.  He ended up in the hospital longer than anticipated and was flown back home via a leer jet (Mediflight) with an onboard ICU 3 weeks later.  They did need to sedate him as he became quite nauseated but other than that he was fine.  He had a huge amount of brain swelling and I was concerned about that but he did just fine on tons of Decadron.  I must say that had it not been so stressful flying home with him in his medical condition flying on a leer jet would be my number one choice of flights home.  No waiting in lines and you get to drive right up to the plane get on and fly off.  Then when you land you get off the plane and drive off.  I sure wish we could fly every time this way.  We got a little taste of how the rich and famous travel.  We only had to pay $18,000 for a 2 hour flight!  What a deal.  16

[sgerrard]

We got a little taste of how the rich and famous travel.  We only had to pay $18,000 for a 2 hour flight!  What a deal.

Did you get Frequent Flyer miles? 

1) Is the Cyberknife a refinement of the Gammaknife, or a whole different technology? It appears they are both "single dose" treatments.  If so, what are the differences, if any?  I realize no one here is an expert, and since your opinions probably aren't peer-reviewed, I'll treat them all as hearsay. :-)  KIDDING!!

I would say CK is a refinement of GK, but that is just hearsay.   As Phyl said, it is usually 3 or 5 doses. It is certainly the same principle as GK: radiation precisely delivered to a specific spot in your head. The radiation source is different, but I have not seen that mentioned as significant. CK is computer controlled during delivery, while GK is mechanical placement. At the CK website, you will see a number like "maybe a 10% better chance of hearing preservation" for CK vs GK. I liked it and would pick it again, but I would be fine with GK as well.

As for flying, I flew from Stanford back to Portland OR, two days after my last zap, without a problem.

Steve