*Update* Surgery Scheduled Sept 6th

[sgerrard]

Oh Sam, I am sorry to hear that, I can only imagine the stress it causes. Hopefully it will get sorted out.

I would start with the doctors, asking them to fax to the insurance company medical director their assessment, including the risks and the pending danger. It would help if they could imply that this is the kind of case that the insurance company doesn't want to get sued over, and that it would be unwise to hold it up.

In that video, the woman herself said two weeks, and another person said 4-6 weeks, but I don't think they showed a doctor actually saying that. Part of the theme of the video was the woman changing her attitude, from initially very pessimistic and morbid, to a more optomistic sense of self determination. I suspect the 2 weeks was her pessimism talking.

However, a large tumor can be dangerous, so I think there is every reason to get Adrian into surgery soon. You have a fine medical team lined up, who have asessed the situation and scheduled surgery in two weeks. Surely you and the doctors can bring that medical director around to seeing that interfering now is medically unwise and could expose the insurance company to serious liability.

I hope you prevail, as they say in the legal business.

Steve

[Windsong]

Adrian and Sam,  thank you so very much for posting that youtube link. It was very well done. I watched it a couple of times now and truly the video has so much that is good for giving a picture/ story about her An story. I was surprised that it took her ten years to get her diagnosis but so very glad to see that she has come such a long way now. I thought it was good that the video showed excerpts of her journal too. The best thing was to see her positive approach as her healing came about once she had  treatment. Wonderful to see she has those around who support her, wonderful to see her own determination and perseverance, and wonderful to see that this video was made and is shared here for others to watch. It's a positive thing.

Thanks again. And all the best to you both.

windsong

[robynabc]

HI,

Adrian and Sam.  Get a lawyer!  I knew that if we had gone to House I would have had to do that.  One of our doctors at University of Colorado had to call our insurance because they decided that they didn't want to cover one of Eric's medicines.  She asked the person at the insurance company what her name was so that they could put in on the lawsuit if Eric had a complication because they would not cover the med.  You should not get this surgery done without the insurance.  Your tumor sounds about the same as Eric's and I really think that you have at least a couple of weeks more than your surgery  date.  Once again ask the docs what they think about that too.   Eric was Dx'd on 1st week of May and the first date available for surgery was June 27th.  We were concerned but the Doctors said it was fine to wait that long. Our doctors were really good about talking to us quickly if we had a question.   It seems when you have something like this the doctors put you on priority status.  They even gave us their pager.

 I would talk to your doctors and get them to go to bat for you on this stuff and tell them what your insurance company is doing.  But I really think you should contact a lawyer. 

On to the Youtube thing.  I did not watch the video because I only get my information from credible sources.  After we decided on a doctor we stayed away from all that inflamitory stuff.  It just scares you. Unnecessarily I might add.  And it is important to stay positive.   Just my take. 

I would fight for this.  You should be able to get your insurance to cover this.  You may want to have a lawyer remind them that this is specialized and keeping you from having therapy by having a really good doctor is less in the long run. Get a Medical Lawyer or at least talk to one and see if they can help you.   If they get a letter from a lawyer I am thinking they will come around.  Good Luck. 

[leapyrtwins]

Sam & Adrian -

like others have said, it's important to have the AN surgery as soon as is reasonably possible, but I don't think it has to be immediately.  I'm not a doctor, but in my opinion, the video on YouTube was a little sensationalized - which is a shame, because it also gave some very useful, insightful information.  It's good to know the rest of the world is becoming aware of ANs since I had never heard of one until I was diagnosed.

As far as the insurance company goes, in my experience insurance companies like to hassle people but they usually back down when pushed appropriately.  First of all ask the doctors to talk to them on your behalf - most doctors are used to insurance problems and are more than willing to go to bat for their patients.  Second, make sure you are talking to the appropriate contacts at the insurance company - go as far to the top as you have to.  Sometimes people in the claims department give you answers that aren't correct.  Third, tell the insurance company you want your case reviewed by a doctor who performs AN surgery with the same qualifications as the doctors you have found.  When I was hospitalized for my AN surgery, there was a question about how many days I stayed in the hospital.  My insurance company had my procedure reviewed by an internist and based their opinion on his recommendations.  While I have nothing against internists, they are not neurosurgeons or neurotologists and have no business deciding how many days someone should be hospitalized for AN surgery.

Lastly, although I don't think litigation is always the solution, Robyn has a good point.  It may be a great way to get your insurance company to come around; patients have rights.  Usually initial consultations with lawyers are free and it wouldn't hurt to consult one if necessary.

I'm so sorry you are going through this when Adrian has made his decision - which is not an easy thing to do.  Keep strong and support each other; you seem like a great couple. 

Good luck and keep us posted.  You both are in my thoughts and prayers.

Jan

[yardtick]

Sam & Adrian,

I would be like you to email personally with your address.  I would like to send a US Money order to help out with your expenses.  I live in Cananda and our costs are covered.  I'm praying for you both. 

Anne Marie

[robynabc]

You know something else our doctors told us and it really is true.  Everyone has thier own story.  They told us not to go by what others have gone through because everyone is different in this surgery.  I really think this is true.  I chose to believe that Eric was going to be fine.  I found every success story possible and tried to follow that.  There is no need to worry about what others have gone through because you are getting the best docs possible and you will have your own story. 

You will be fine no matter what happens.  I believe that whole heartedly.

Peace,

Robyn.

[Jim Scott]

Hi, Sam:

Thanks for posting.  I'm truly sorry to learn of Adrian's problems.  I thought he was all set.  Obviously, not quite.

I watched the YouTube video with interest as I had a similar-sized AN.  I have a few comments. 

The young woman who stated that she had "two weeks to live" after being diagnosed with a large acoustic neuroma tumor was either misinformed or simply dramatizing her situation, for effect.  Following my diagnosis, my neurosurgeon was very anxious to 'get me into surgery', but it was another 2½ weeks before the surgery was performed.  He did tell me that "this thing could kill you" but he never went so far as to tell me I had only a certain amount of time to live.  If a doctor actually told this women something like that, it was somewhat callous on his part.  If she misunderstood, that was her mistake.  If she simply imagined that she only had two weeks to live, she was dramatizing her situation.  If she really believed she only had two weeks to live, she was probably still mistaken.  Acoustic neuroma tumors are not brain cancer.  If the brainstem is involved and the tumor is allowed to progress, they can cause death, but to my knowledge, this is very rare.

That noted, her positive attitude and determination to recover is commendable.  I had a similar determination, thankfully minus the facial paralysis.  Knowing I only had relatively minor post-AN hurdles to overcome, I pushed myself to get back to normal...and I did.  Just as the woman in the YouTube video has.  I think her vanity was a part of her motivation but youthful vanity isn't a crime and she apparently made it work to her benefit.  I still think her "two weeks to live" statement was highly overblown as well as inaccurate.

On Adrians insurance complications:  I speak from experience when I tell you that talking to the insurance company representatives helps.  If you get no satisfaction, ask - politely - to speak to a supervisor.  Do not give up or be persuaded to put anything off.  As others have stated, have documentation ready to fax.  Emphasize the seriousness of the situation and that you have a right to choose the surgeon, even if he is out of network. Call ahead and have the surgeon ready to talk to or fax his opinion to the insurance company.  Be polite but tenacious.  My wife handled our insurance claims and was just that: polite but as tenacious as a bulldog with a bone.  Blue Cross never had a chance.    Plan to spend lots of time on the telephone.  It's worth it.  Understand that you'll probably have to shell out a hefty deductible payment, but in my experience, doctors and hospitals generally will accept a payment plan that is within 12 months so you won't need to come up mounds of cash right away. 

While Adrian's AN is large and evidently in a bad spot, I would imagine that he'll probably have the surgery on schedule if you have anything to do with it.  Go get' em Sam!    

We're all rooting for both of you.

Jim

   

[mema]

Adrian and Sam,                                                                                                                                                                       


That's where my ENT sent me to Dr. Bartels.  Yes he has a very good reputation.  If I had chosen surgery Dr. Bartels is who I would of gone with.  My AN was small so Dr. Bartels talked about my option of radiasurgery.  That is the route I chose.  I went to John Hopkins in Baltimore, Thomas Jefferson in Philadelphia and MD Anderson in Orlando( which is part of MD Anderson in Texas.)  I had consultations with all of them and a few others over the telephone.  I chose MD Anderson in Orlando.  Since my radiation treatments I now see a neuro-oncologist By the name of Dr. George Bobustuc at MD Anderson in Orlando.  I'd say he is in his late thirties or early forties. He is a very intelligent Dr.  who has answered questions I've been asking others for 18 months.  He even didn't know one answer but said by my next visit he would have found out.  And he did.  I had asked some of the nurses that were involved in my treatments and they all recommended him highly.    Maybe he could be a start for you in Orlando.  My son who is in medical field always says go to a teaching hospital.  MD Anderson is one as well as Tampa General.           
I hope the insurance issue works out for you, but MD Anderson in Orlando might be an alternative.  Good luck.                         

[Battyp]

Sam tell your insurance company you need a case manager. You will be given one person to talk to and monitor your situation. It did make things easier for me to deal with as my case manager helped me with follow up items needed and made sure I was able to get the meds, therapy and stuff necessary.

As far as Renee's video. Interesting, I found her recovery oen of hope. The before and after pics and the fact she is farther out from I gave me hope that maybe my face will regain some more feeling. Is it possible she was told two weeks, yes, I was told I needed to be on a surgical table asap or within 6 weeks due to my brain stem involvement. Is it possible her doctor over exaggerated, yes, epecially if the doctor was unfamiliar with what he was looking at. Focus on how well she is doing now.  Trust your gut, you'be made a great decision and will a little more preserverance all will work out. You know we all have your and Adrian's back!

Adrian's surgery is the day before my bday..for my bday this year I was a report that Adrain did tremendous in surgery!   

Hugs,
M

[Samantha n Adrian]

Thank you all so much for all the advice regarding our insurance issues. Unfortunately Adrian’s insurance is not a group insurance plan. The company he works for owns a medical center in Orlando and they are self insured through Florida Hospital, which is why they want the surgery performed there. The thing though that amazes me is that when we received an insurance quote from Florida Hosp. they quoted $150k vs Tampa General’s cash price of $55k, now even if they get one hell of a discount I can’t see it being a $95k discount!

On another note we received MORE bad news yesterday. Adrian received an e-mail from his supervisor as reads below:

Adrian,
As we have discussed, your request for a 30 day leave of absence, effective August 29th, 2007, has been approved and submitted to Human Resources for review.
Once the 30 day period has been reached failure to return to work will result in voluntary termination.
When you do return within the 30 day period it will be necessary to have written documentation from you doctor releasing you to full-time work and able to perform your current duties.
As there are no part-time positions available in Purchasing and if there are stipulations as to part-time status; it will be necessary to consult the positions open in the company that are of part-time status for future employment.
   
We look forward to your speedy recovery and return to work .
We will gladly assist in any way possible to that end.

Adrian setup an appointment this morning with HR regarding this and they claim it is a state law, not just their policy. I told him we will see about that. I will be talking with a lawyer this afternoon.

They informed him that if he does not return after his 30 day leave of absence (Sept 28th) he and his insurance will be terminated as of that exact day.

I can assure you all this will not be going down without a fight. I fully intend to research what exactly the laws in the state of Florida are regarding all of this.

We are both hurt by this and feel betrayed. I will definitely keep this thread updated to the findings and outcome of our new situation.

Thank you again so much for all the wonderful suggestions, as well as the kind words, warm thoughts, prayers and support you all have been sending our way.  Our one main comfort is still this forum and our AN family.

xox
Sam~

[nancyann]

The FMLA (Family Medical Leave Act) allows you to take 12 weeks off work unpaid. (This is the law).   I was out for 2 months from work.  The only thing I had to do to keep my insurance effective was to continue paying the amount deducted from my paycheck for benefits (for me it was $40 something dollars every 2 weeks).   You then , by law, will return to your previous position.   Google FMLA - it's not only about pregnancy, but yourself, or family members you may need to take care of.   (I also had to have my dr. fill out an 8 page questionnaire re: my illness, etc. per my work policy; then a note stating when I can return to work, how many days if not full time, etc. was given to our employee health dept. a day or two before my return).  Show your idiot employer a copy of the FMLA

[Samantha n Adrian]

Hi everyone….Adrian here.  I first would like to say…WOW!  The amount of support from people that we don’t even know is truly amazing.  Yes…I know we have an “AN Connectionâ€? and that is possibly a stronger bond than most friendships, but I’m absolutely awestruck!

I want to clarify a few facts that Sam had incorrect (yes Baby….I’m always correcting you….I LOVE YOU!).  My company is self insured and is through a network of Florida Hospital’s.  Obviously, they want to keep the money “in-houseâ€?.  They are having a problem with this case as they have surgeons in house that “canâ€? perform this surgery.  However, I am not impressed with these surgeons.  Also….the price that FL Hospital quoted me is a “cashâ€? price and is not the same price as what my company receives through their deep discounts.  This is a rather moot point as my company’s price is neck-in-neck with Tampa General’s price which is extremely fair.  The surgeons fees are also the same….give on take a couple grand.  Basically….money is not the problem here.  I don’t exactly know what is, but I suspect that it’s because FL Hospital wants to keep the money “in-houseâ€?.  My argument is that Dr. Bartels’ experience supersedes any surgeon’s in network.  Dr. van Loveren they have actually used before in the past.  This all seems strange to me.

As far as the letter from my boss….there is an act…FMLA….Family Medical Leave Act which I do not qualify for because I’ve been at my job for less than 1 year.   Florida is a “right to work stateâ€? and supposedly the 30 day LOA is a state policy and not a company policy.  We don’t know how true that is and will hear from the lawyer today.  ***Sam just emailed me the lawyer’s response and there is not even a law which requires companies to grant the 30 days.  So…..I’m up a creek.  FYI….I have 90 days past my “terminationâ€? date to re-apply for my job or another position and still keep my seniority, benefits, etc.

I sent Dr. Bartels, who has been absolutely amazing through the onset of our talks, an email this morning asking if he’d write a letter that I can forward to everyone: HR, Insurance Company, FL Hospital, etc.  I have not heard from him yet, but I know I will.  I will keep everyone informed.

As for the youtube video…..I didn’t know what to think.  I was a bit skeptical of the “2 weeks to liveâ€? line, but it keeps ringing in my head.  Also….I was distraught regarding her facial paralysis.  I didn’t think it would be so “dramaticâ€? and I guess the reality of the upward struggle to use one’s face became a reality.  Truthfully, it bummed me out  Not that my attitude has changed, but as I said, the reality of it was scary.

Thank you for all of your posts and support.  You have NO idea (or maybe you do) how good it makes me feel.  It really shows just how good people still can be!



Thank you,
Adrian

[Samantha n Adrian]

This is the letter that Dr. Bartels emailed me:


To whom it may concern:
Mr. Adrian xxxx has a large acoustic neuroma with a deteriorating status consisting of progressive facial numbness, facial weakness, dry eye, hearing impairment, headache, and difficulty walking. He is already experiencing parasympathetic nervous system changes of odd skin temperature sensations that are likely tumor related. These are signs of increasing intracranial pressure and serious brain stem compression. This large lesion requires more than occasional expertise in managing major posterior fossa surgery through a complex extended transpetrosal/translabyrinthine approach. Failure to do this surgery quite soon risks increasing intracranial pressure which could cause brain herniation and abrupt death. This is a most serious problem for which surgery cannot continue to wait.
A highly experienced team at Tampa General Hospital consisting of team leaders Dr. Harry Van Loveren and myself will be happy to provide this service. Dr. Van Loveren and I each have experience with over 600 tumors involving the skull base, many of which are serious in the character of this lesion.  My experience is largely based in Tampa . Dr. Van Loveren has both Tampa and Cincinnati experience. We are both recognized nationally for skull base tumor work such as the care of major acoustic neuroma.
Delaying this surgery is not in the best interests of the patient.
Please feel free to ask any other questions.   
 
Loren J Bartels MD FACS
Director, Tampa Bay Hearing and Balance Center
Clinical Professor of Otolaryngology
University of South Florida College of Medicine
4 Columbia Drive 610
Tampa, FL 33606
813 844 4900  813 844 HEAR  Fax 813 844 4905
lbartels@tampabayhearing.com

(edited to keep personal info offline for internet security reasons.... thanks for understanding. Phyl)

[Jim Scott]

Hi, Adrian & Sam (or is it Sam and Adrian?):

Wow, what a roller coaster ride you're having.

Thanks for the clarification regarding your medical plan (in-house) and your job status (less than 1 year).  This helps explain a lot.

I would urge you both to continue to fight to have Dr. Bartels perform the surgery.  I can tell you from experience that having a surgeon with an extensive background operating on AN tumors is crucial.  Yes, facial paralysis certainly can occur but with nerve-monitoring, as my surgeon used, that risk can be minimized.  I had no facial paralysis with a 4.5 cm tumor.  My neurosurgeon only removed about a third of the tumor and I had FSR to kill the remainder.  That really worked well.  This approach avoids having the surgeon trying to cut away every last bit of the tumor, which can result in nerve damage in many cases.  In your case, which sounds similar to mine -a large AN tumor pushing on the brainstem - Dr. Bartel wrote a very convincing letter, outlining the situation and the urgency involved, that should help your case with your company.  The $55,000. price that Tampa General quoted sounds reasonable.  My hospital charged a total of $58,000. and the surgical team ran about $30,000. plus meds. 

Your work situation stinks but I don't see much that you can do about it.  Apparently, in your state (Florida). until you've been with a place of business a full year, you're basically there on a 'mutual agreement' day-to-day basis and they owe you almost nothing in terms of leave, paid or unpaid.  That being the case, I pray you have a rapid recovery.  Unfortunately, I have some doubts about your doctor signing off on you going right back to your job, unless it's totally sedentary.  That could happen - but most physicians are cautious about allowing post-op AN patients to jump right back into a full-time job.  Should problems arise, they don't want to be sued for 'pushing you', even if it was you that may have been doing the pushing.  That's an understandable CYA move but would adversely affect you.  Let's just hope that your recovery is both rapid and complete, so you can return to work within the narrow 30-day period.  If not, it's pretty clear that you'll have to find a new job, which just seems so wrong, but of course, life isn't always 'fair', as most of us know.     

I truly hope all this works out for you, Adrian.  No one should have this much angst before undergoing AN surgery.  No one.   

Jim

[Windsong]

This entire 30 day thing really has me wondering who are these people? The way I read the last post is that this company somehow can circumvent the  state law? Since when is a company above state/federal law? Also this whole thing anyway sounds like a conflict of interest for that ins company along with your company where you work  since you said they own it? (they are hand in hand as I understand the posts) and the conflict appears  to be that "they" are telling you where and who should operate on your head/ brain? That is truly sad. Unless the person at the top is absolutely totally cognizant and knowledgeable about all aspects of every An situation and An treatment possibility, and is up on all research world wide in this day of the net,  I find this situation entirely repugnant.

I can only hope that you get this resolved in the best way possible for you.

It is most important that someone who has an An can get the best treatment possible without all this nonsense and stress..

Put on a nice relax tape, keep being strong, discuss issues with that lawyer and I think/hope that this will be resolved in your best interests.

You can do a lot about this.

Hugs and more hugs to both of you and take care,
all the best,

windsong