Very Important...

[vicki1967]

I'm feeling quite 'mislead'. Diagnosed with a 'small' Acoustic Neuroma by my Primary Physician in August of 2006, he immediately referred me to a Neurologist.
First, I should explain my first few experiences (you may want to skip these, as I am only providing my experiences to show all the run-around I had to deal with before I realized what I truly NEEDED to know) -
My first appointment was at the Cleveland Clinic's Taussig Cancer Center. The mere thought of the surgery, as described by the Neurologist, terrified the hell out of me. He described cutting open the skull, 'moving' the brain aside, etc...I never thought I had any other options - with regards to surgery. Gamma Knife was out of the subject for me - I just wanted this thing 'out'. I was not pleased with this particular facility, as I read an article in our newspaper about a staff member (in that very department) assaulting his nurse/fiancee while at work (he allegedly choked her in the bathroom because he thought she stole his gym shorts out of his gym bag). The now ex-fiancee was upset that he was allowed to continue working there while his trial was pending. I would be, too.
Next, I try out Metrohealth Medical Center, where I see Dr. Meg Verrees. This doctor continually cancelled my appointments, and never had the time to answer my questions or concerns. Then, when I finally arrived for an appointment, I was told it was cancelled, yet no one had called me to let me know. When I notified the secretary there - that I was quite upset - she complained 'I have 30 appointments to cancel for the rest of the week!!' When I've been diagnosed with a 'brain tumor', and I can't get a simple phone call notification that my appointment was cancelled, and my physician doesn't have time for me, I'm going to be quite ticked off. This led me to my next physician...
My third experience was with Dr. Megerian, of University Hospitals. I felt pretty comfortable with this physician - at my appointment. At this visit - I learned something I was never advised of - at any of the past appointments (which I'll explain in just a moment). As I actually had a surgery date with this physician, I had to cancel it. I never thought the THIRD experience would be shot down, as well. First, I had faxed my FMLA form directly to his nurse to be completed - which contained specific instructions to mail the completed request back to me. I needed this back within two weeks - for my employer. Although I received a fax confirmation, I did not receive any confirmation from his nurse that she received the form. After a week and a half, I left a voice message on the nurse's line to call me back, as I hadn't received the FMLA form back. Again, no acknowledgement. Then, after a few more days, I decided to email the doctor's secretary - advising the nurse never contacted me, and I needed that completed form. At this point, everyone started contacting me - UH's financial support, the secretary, and the nurse. The nurse said to me 'Vicki, I mailed the completed form right back to you, right after I spoke to you on the phone, two weeks ago!' Ok, I NEVER spoke to her on the phone, and I NEVER received the completed form. I am 100% positive of this. I explained this to her. Then, she says, 'Well, I'll send you ANOTHER ONE'. Another one? Where the hell is the first one?? And, WHO did she speak to?? It wasn't me! So, she sends this 'other one' on a Friday - insisting I'd get it soon. Ok, ONE WEEK LATER, I STILL DIDN'T RECEIVE IT. She then apologizes, and says, 'Can you call your employer back and request another copy? Unfortunately, the secretary's 'NEW', and she DIDN'T MAKE A COPY'. By now, my employer had denied the request since it wasn't turned in within two weeks of receipt. Needless to say, I am quite upset that someone, other than me, has my medical information and no one can account for it. When I asked the nurse to have Dr. Megerian call me back, he called me very soon after. He quickly referred me to the Cleveland Clinic, as he did not care to deal with the fact my medical information could not be accounted for. He said 'I thought I was calling you back because you had concerns about the surgery. You can go to the Cleveland Clinic if you want, that's ok'. No concern, whatsoever. I'm actually quite relieved to get the heck away from that doctor's office. 

Now - the important piece of information here:
When I advised the nurse at Dr. Megerian's office that I wanted to know about any 'other' doctors who could perform Dr. Megerian's procedure - through the ear - and not through the SKULL - she advised of his 'main competitor', Dr. Peter Weber - at the Cleveland Clinic. When I advised her that the previous doctor there did not offer the 'through the ear' procedure, she advised that was because I went to a NEUROLOGIST - and I could simply go to an ENT (Ear, nose, throat) doctor - who COULD perform such surgeries THROUGH THE EAR. The procedure is called Translabyrinthine. Since my tumor is still considered small, this procedure is possible. Had I known this upon diagnosis, I would have made the appointment right then and there! Instead, I'm 'watching it grow'. I'm quite ticked off - since the 'ear' technique can only be performed on small tumors. Although it is still considered 'small', it 'has' been growing - based on two follow-up MRI's. Now that I am starting from ground zero, I have to await another surgery appointment. Who knows if it will be too large for the 'ear' technique by then. However, I do feel more comfortable with this physician's office, as the secretary there is quite professional - and shows actual CONCERN for me. My point being, why didn't the first, and second Neurologist advise of this procedure? I can't imagine anyone willing to take the Neurologists' procedure over the ENT's procedure! After all of this run- around, I could have had this taken care of - back in 2006!

[Sam Rush]

VERY IMPORTANT!!!

DO NOT WASTE YOUR TIME WITH A NEUROLOGIST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Neurologists don't do anything except confirm the MRI diagnosis, which your internist can do.

You need a good ENT skull base surgeon AND neurosurgeon, AND a caring competent internist.

The  translab surgery can be done on medium and large tumors, but if you have servicable hearing, you don't want that, as it is designed to be a simpler operation at the expense of 100% hearing loss on that side.

You seem to be lost in a a disorganized chaotic health care fiasco which is the last thing you need w/ a brain tumor. Get yourself into s system where they know what they're doing and care about people, even if you have to travel.

Hints: House clinic, Stanford, Mass. General. Chicago Ear inst. or other suggestions from the people on this forum who have had positive experiences and good outcomes.

[Syl]

Vicki,
So sorry that you've been through all that, as if having a brain tumor wasn't enough.
Can you still hear out of your AN side?
The middle fossa and retrosigmoid approaches do involve moving the brain aside to get to the tumor, but are done in an attempt to save your hearing. However there are higher risks of stroke and damage to the facial nerve.

At first, I too thought that the translab was done through the ear, but realized later it was too good to be true. The Translabyrinthine approach is the most direct path to the tumor, with lower risk of stroke and damage to the facial nerve. But it involves opening the skull right behind the ear, going through the ear canal, and sacrificing your hearing to get to the tumor.  

As far as I know all three procedures can be performed on small tumors. But location of the tumor and your age are also a factors to consider in deciding which procedure to choose.

Don't forget that radiation is also an option. Have you looked into that at all?

Please get more opinions. There is just too much at stake here. I'm sure other forumites will soon be checking in to provide more advice. I think there are some from your area. Maybe they'll be able to recommend Drs. for you.

Hang in there Vicki.

Syl.

[leapyrtwins]

Vicki -

sounds like you are getting a major runaround - as if having an AN isn't stressful enough 

Sam is right - read his post very carefully. 

Since it sounds like you are in or near Ohio, I would highly recommend Ear Institute of Chicago (Drs. Wiet & Battista).  They do both radiation (GK) and surgery and have lots of experience.  In addition, you will be well taken care of by their staff.  I had surgery with Dr. Battista almost one year ago and I had a wonderful experience and an excellent outcome.  I can't say enough good things about him and his staff.  Although I personally don't know Dr. Wiet, I know someone on the forum who just consulted with him last week and really, really liked him.  He has an excellent reputation.

Don't be discouraged by bad health care and doctors who are less than compassionate - they do exist - but the good news is, there are plenty of great ones out there.

Good luck,

Jan

[sgerrard]

Hi Vicki,

As you can tell from the other postsl, trans-lab is not a minor procedure. So the first thing is to stop regretting not having treatment back in 2006. Watching and waiting is a reasonable thing to do for a small AN. Second, find a good doctor that you trust, that has experience with ANs, and that you feel is taking your case seriously. The doctor-patient relationship is very important when working with an AN.

Your choices for treatment are probably 1) Trans-lab surgery, which sacrifices hearing; 2) Middle Fossa surgery, which can preserve hearing; 3) Radiation treatment, which also can preserve hearing. There are pros and cons to all three, and the likely success of each depends on the size and location of your AN. Taking some time to find out about all three choices, and to find a good doctor and clinic to work with, will be worth the effort.

Best wishes,

Steve

[Pembo]

Vicki, As others have said translab is still brain surgery. I'm sorry you are having such a hard time with all the docs and their staff here in Cleveland. I've had my share of difficulties with the staff at doctors offices. I think that is par for the course in medicine today. Too many people not knowing what the others are doing.

I've known a few people from these forums who have seen Dr. Weber. Good luck to you.

[4cm in Pacific Northwest]

Vicki,

First of all an enormous HUG to you!

You have been thorough the mill.

I can totally empathize. There is a light at the end of the tunnel - hang in there.

I first complained of symptoms in 1998. Often my symptoms were cyclical being that PMS causes water retention and too the AN tumor would swell up at this time- magnifying things.

After blood work came back “normal� and I still had symptoms my physician suggested physically I was just fine but perhaps I should see a stress therapist.

8 year later I was still having symptoms. I switched PCP’s. Fortunately a hearing test was conducted so a flag of marginal hearing loss was noted – however it was suggested this may just be part of aging.  Cyclical symptoms persisted and worsened. So get this a hysterectomy was performed as we noted a 60 % growth in a fibroid tumor. I was convinced that my issues were not all in my head and there was something physically wrong with me so I went ahead  with this surgery hoping it would make me well- but it did not. (Well it was in my head alright- just not metaphorically but literally.) Fibroid tumors, which are not uncommon in women at my age, if left alone will normally shrivel up at menopause. Turned out the benign fibroid tumor was already degenerate (i.e. already cut off from the blood supply) and the pathology showed a perfectly healthy uterus was removed. Yup- we pulled out a normal healthy body part unnecessarily as we barked up the wrong tree.

Nobody thought to look for an Acoustic Neuroma tumor. (Mine was 4cm when we finally found it) Basically much of the “generalist medical community� is simply not educated on this subject.

I was initially only offered one neurotologist and one neurologist  for referral by my ENT. (I explained I went on-line to this forum and I wanted more than the surgeons in my locale and asked “what about a neurosurgeonâ€?. BTW a neurologist is NOT what you need here). I did see the local surgeons offered to me - but my experiences were similar to what you have described with surgeons you saw- unprofessional support staff, and not get basic questions answered on the phone within a timely manner (One actually hung up the phone one me.). I also came to realize that here in my state these surgeons were big fish in a small pond (with egos to match) and I needed to look at a broader spectrum of people in their field who were more reputable (I actually decided to look for the “world renownedâ€?.)

Chances are if this is how they are treating you now you can predict this is what is going to also be the case when you get home form hospital and need support with any post op complications etc.

I interviewed nine surgeons. One stood out in his replies to me but also his support staff and office team were exemplary in their professionalism and people skills: not just in person, but over the phone and their prompt handling of paperwork. Interestingly that the medical staff in my own state gave me the run-around and took forever to get back to me yet the surgeon I choose, out-of-state, was always able to get back to me sooner than they were. I just went to a recent support group meeting and many other people here who stuck with this one surgeon here had the run-around also …and seem to now have lack of follow up care and support.

Yes there are some real yutz’s in the medical profession- but there are in other professions too. However know there are also some exemplary ones – the trick it to find them. I networked and asked questions of many people on this forum and continued to pursue the most successful and professional and suitable medical practice for my case (remember each case is different.) There were many emotional hurdles on the way. I also realized some surgeons were competing with others surgeons to get my case and actually would backbite their colleagues to make themselves look better. This is a commercial healthcare system in the USA and that can be one drawback to it. I chose the surgeon who did not participate in this negative behavior and who treated me with respect and dignity AND also had an excellent professional track record.

Know this resource is available if you want to look up malpractice suits and past history of a medical professional. Chances are if you are experiencing negative behaviors with a medical practitioner- others have to.
www.healthgrades.com

Not only do you need someone who is of the utmost integrity, honesty and efficiency before and during surgery but also AFTER surgery. I believe follow-up care is key to the successful recovery of a patient: mentally, physically and spiritually and the more team approach that can be taken in this regard- the better. “The team� requires skilled and compassionate physicians (plus their support staff), physical therapists and the willingness of the patient to participate in their part of the recovery plan.

Basically you need a practice that is displaying good “team skills� not just now - but also later (post surgery)

I still think the team I chose is giving me great support and now that I have met with others in a support group meeting in my locale- I am even more convinced of this. Know I chose surgeon #8 of the 9 I interviewed.

You and I will beat ourselves up if we try to go back in time and say, “shoulda -woulda- coulda�. Hey if I was listened to 9 years ago, when I first complained of symptoms, I could have had the radiation surgery option over open surgery … but I cannot go there now. I have to be thankful that the tumor is out, I do not have cognitive issues, I am still here to help my family and I now have enough energy to also help others.

I am SO sorry you are going though this.

Know that you still have time and you do still have options. Some discover this so late they have no options at all. SATMAN (one of my ANA forum super heroes) had his 8CM discovered and treated only when he was admitted to emergency …and we almost lost him. He had been seeing an ENT for years before… Thank God he is still with us and he found support here ...and is moving forward with his life.

MORE HUGS

This is why our ANA needs to grow bigger and stronger. The key is we need to work together to not just educate other patents but also the medical community. It is important that you tell you story so that others can learn from this.

My suggestion is try to let go of the anger at the incompetence you keep experiencing within the medical community. Hard as it might be - try to keep placing yourself in the role of educator with them- as well as patient. Document Document Document ...everything that is happening. Do as much as your communication to them, as possible, in writing -so you have more documentation…

I also suggest that you obtain more opinions. I decided my role was not to support the local medical economy (and boy some were competitive with each other and manipulating me, the patient, as they acted act more as salesmen than they did as medical professionals.) I went out to find the best I could get in the US for my treatment.

Stay connected with us here on the forum. Gather as much information as you can from the ANA and the invaluable resource of experienced people on this forum here… but also try not to get too overwhelmed with all the information. We are at an “information era� that often we have more information about treatment (and follow up) options available to AN patients as now this is now available to us (Thank goodness). We are more motivated to get the best information and understand it… perhaps more motivated than the medical community.

I have learned that the best advocate for me in all of this is - me. And the ANA is there to provide me with support when I feel that my situation is hopeless.

Hey this time last year I had never even heard of an acoustic neuroma heck knows how to pronounce “vestibular schwannoma�…

I did find a good surgeon- eventually. I did survive surgery and lived to tell about it. I am now getting follow up help (physio, etc) but I had to work at it… and I got a lot of support here from the forum not just in finding a surgeon, but accommodations out-of-state, physiotherapy etc.

I know right now you may not believe this – but you WILL get through this. Keep moving forward and know you ARE supported.

Hugs

Daisy Head Mazy

P.S.
You really need to read this DR. Seuss book- Daisy Head Mazy - I think you, too, will relate to the main character and her journey
http://www.amazon.com/Daisy-Head-Mayzie-Classic-Seuss-Dr/dp/0679867120/ref=pd_bbs_2?ie=UTF8&s=books&qid=1210524497&sr=1-2
Another goodie is
You're Only Old Once! A Book for Obsolete Children
http://www.amazon.com/Youre-Only-Once-Obsolete-Children/dp/0394551907

(This is Seuss's hilarious poke at the medical system)

You will soon discover, hard as this may be for you right now, that maintaining a sense a humor will keep you sane through this wild AN journey

[cmp]

Vicki,

So sorry you are having to deal with unprofessional/incompetent medical staff & doctors when you are trying to chart a course for yourself through a frightening diagnosis. I ran into my share of them along the way, too: The ENTs I saw in grad school who dismissively misdiagnosed the beginnings of my hearing loss 5 years before an MRI  showed a 5 cm tumor; the inexperienced small town NM neurosurgeon I saw who had such a bad "bedside manner" I practically ran out of his office after he listed the half-dozen ways my tumor could kill me, ANY MOMENT!! (as if I was perhaps resisting the idea of getting it out!); the idiots in the medical records office in Shands Hospital, FL who destroyed the films and operative notes from my surgery 20 years ago so that my current neurosurgeon has no prior history...

It's amazing how dumb some supposedly super-highly educated folk can be! As Mazy says, though (among the many very sound points in her post), your best bet is to let go of your anger at what you have encountered thus far, and concentrate on finding a team and treatment plan you are comfortable with now. Also, keep in mind that ANs are very slow growing--it may be that, as your AN was small in 2006, if you had found a great team back then, they may actually have advised watching and waiting till now anyway!

Please see if you can use info on this forum about various doctors in your area to guide you to someone you have confidence in. There are so many out there now who have lots of experience in ANs, so just think of yourself as a smart shopper and don't worry too much about the "rejects"!

Also, I've found a definite correlation between good office staff and great doctors. If the office help is disorganized or surly, surely the doctor knows about it, and to me, that reflects HORRIBLY on them! So gather info, check out all your options, and listen to your instincts--you have choices, and finding the best doctors you can is one of them!

(I agree with what's been said above about a neurologist being pretty much useless to you...)

Good luck!

[Jim Scott]

Hi, Vicky: 

Wow, what a hassle you've had!

For whatever good it may do, you certainly have my sympathy and that of any other AN patient who has suffered with the kinds of situations you've had to deal with.  Unfortunately, these types of blunders are not unknown when it comes to doctor's office employees.  You have to be on top of whatever it is you need; be it a test result, appointment, paperwork, whatever.  You simply cannot assume the secretary or nurse will do what they say they will do, when they are supposed to do it.  It shouldn't be that way...but it is...and as patients we have to be proactive and not take anyone's word that something is (or will be) done as promised.   

I'm fortunate in that my wife and I have a good relationship with my neurosurgeon's secretary.  Whenever I have to visit the office for a check-up we always take the time to chat with her and thank her for anything she's done for us, such as scheduling an appointment at our convenience.  However, the first neurosurgeon I visited after my AN diagnosis was quite aloof.  His equally disinterested secretary didn't get back to us for two weeks (to schedule an actual consultation).  When she finally called, I was quite pleased to tell her I had long since engaged another neurosurgeon, my surgery was scheduled for a week away and that her bosses services wouldn't be needed.   She didn't sound pleased, which bothered me not at all.  But I digress....

I trust you understand Translabyrinth AN surgery is not endoscopic.  "Through the ear' is not a literal description of the surgical procedure.  Your skull is still 'opened up'.  I sensed that you were a bit misinformed along the way but I trust this has been clarified, now.  You can be encouraged by the fact that this is a very popular AN surgery.  Many AN patients have undergone 'Translab' with very good results.  Some of them post on this forum.  I have confidence that you'll be one of them.    I sincerely hope you get your surgery dates sorted out and are able to move on with your life, soon, after all the hassles you've had so far, most of which were unnecessary had people simply done their job.  However, that is in the past.  You have to focus on the present  I 'm sure you will and I look forward to seeing more posts with better news, soon.  Stay in touch. 

Jim   

[NW]

Vicki,
I am from Ohio also & did have a consult with Dr. Webber. My AN was 9mmx8mmx10mm with no other symptoms except for a slight hearing loss. He was recommending the retrosigmoid approach, although he does more Gamma Knife than surgeries. I never heard of the Translab through the ear. It is behind the ear. Skull cut. Dr. Webber works with a Neurosurgeon Dr. Lee. When I asked if I'd meet with Dr. Lee he said only if I wanted to. He was really gearing me towards having the Gamma done. Needless to say as I did more research I found the most wonderful doctor in Columbus at OSU Medical Center. Dr. Brad Welling. If you can I'd suggest having a consult with him & his staff. Once I met him I felt so comfortable. I immedietely knew he was the one for me. I work in the medical field  so needless to say I had a zillion & one questions! Not once did he look at his watch or try to rush me through. If there is any questions I can help you answer please feel free to email me!! Take your time, research & make sure you find the doc you are really, truly comfortable with. I know what you're going through.
Nancy

[vicki1967]

Wow - alot of advice here! Thank you all so much! After reading each response, I am most surprised with finding out I will lose my hearing in that ear (from the translab procedure) - that's the first time I've heard this. I'm not surprised, though, because it seems like I can only get the FACTS from this forum. I'm just losing faith in doctors (and, obviously, their staff). I am already hard of hearing in the AN ear. And, I don't hear clearly in that ear - it sounds like someone is talking from the bottom of a tin can (it's muffled, too). I believe my first experience with hearing loss was when I was in my late teens - an explosion in a car I was in caused nerve damage. I remember asking 'what did you say?' just a little more than most people, however, when I was around 30 years of age, I remember needing to ask that question much more frequently than others. When I turned 38, I answered my home telephone (always using my left ear), and I immediately thought something was wrong with the phone. I discontinued the conversation, assuming my phone needed to be replaced. When I arrived to work, and answered the phone there, I immediately thought that phone was bad, too (I actually forgot about the home phone 'problem'). I told a coworker to listen to my phone, and she said nothing was wrong with it. I put the phone to my other ear, and it was fine. A short time later, I was diagnosed with AN. Getting used to listening through the 'other' ear was hard, at first, as I felt like I couldn't 'think' using that ear. I really can't afford to lose all of the hearing in my left ear, as my right ear still has nerve damage. I have a young son, and I really don't want to take a 'great' chance of losing more. I'm struggling with the other ear - that I'm really depending on now. I feel like throwing my arms up in the air once more. I'm so sick of fighting this. I actually had to take a week off from work just to get my life together (doctor's issues, house cleaning, etc...) Sometimes I just think I was doomed right from the beginning. At work, I'm treated like I'm some kind of 'freak' for being hard of hearing. Besides being with my son, this is the ONLY place that gives me any encouragement to continue moving on.

[leapyrtwins]

Vicki -

Translab surgery, because of the approach, will automatically make you lose all hearing in your AN ear.  Retrosigmoid and mid fossa - different surgical approaches - will give you the chance of possibly saving the amount of hearing you currently have in your AN ear.

If you decide to choose surgery, rather than radiation, you might want to look into retrosigmoid or mid fossa.

Jan

[leapyrtwins]

Vicki -

I forgot to suggest to you in my last post that you contact the ANA and ask them to send you some literature about ANs.  The literature will describe your treatment options in detail and also tell you what side-effects you may expect.  This is also something a qualified doctor can tell you, but I found it helpful to be able to read it in easy terms and also to have it written down for me so I could refer to it at any time.

Jan

[Kate B]

Vicky,

You sure have gotten the run around.

Not all doctors are familiar with acoustic neuromas as they occur approximately 1 in 100,000 people.
I know here in Chicago, there are several well known doctors that have made acoustic neuromas their speciality.

That being said, House Ear Clinic is one of the most renown places in the world for Acoustic Neuromas and diseases of the ear and they are located in LA. The best part is that you get their expertise for "free" just by sending your MRI and report to them.   The House Ear Clinic website has statistics relative to facial nerve preservation on it.
http://www.houseearclinic.com/acousticneuroma.htm

Here is the mailing info:

Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)

Kate

[vicki1967]

Thanks again for more information! I am going to the library today to print all of this information & bring it to my appointment with Dr. Weber. I certainly needed to know about those other two options - because the doctors never brought those up to me! I am so shocked to know that, as I awaited my actual surgery with Dr. Megerian, I was actually GOING to lose my hearing with HIS approach - something he NEVER told me! Thank heaven's his nurse was so incompetent, because I'm so glad I didn't go through with it!!! I wonder, though, who is able to perform those other two procedures - a Neurologist, or an ENT? If I have even a SMALL chance of preserving my hearing in the AN ear - I will take the more serious procedure. I plan on picking up all of my medical reports (left with Megerian) on Tuesday - and I will take the next piece of advice - with regards to sending my info to that address for a consultation. Thank you all so much!!!