*Update* Surgery Scheduled Sept 6th

[Samantha n Adrian]

Thru my long time friend Steve, and a surgeon friend of his who I consider more than acquaintance to me, Dr. Rechtine, suggested an Otolaryngologist (head and neck Dr.) in Tampa named Dr. Loren Bartels http://www.tampabayhearing.com/PeopleBartels.aspx .  He was a colleague of Dr. Rechtine at Tampa General several years ago.  He and his wife Jo, who was a nurse at Tampa General, both said that if they had an AN (acoustic neuroma), this is where they would go.  So I took that as strong advice.  Several weeks ago I sent Dr. Bartels an email along with a CD of my MRI detailing my situation and he responded immediately.  He asked me several questions, and I answered them with a book’s worth of words.  He then sent me back a novel’s worth of answers, detailing why I have my symptoms and educating me about it.  I knew instantly that I felt very comfortable with Dr. Bartels whose resume is amazing.  He’s accomplished more in 1 week than most of us do in our lifetime.  We had emailed regularly and with each email he sent I knew more and more that he should be one of my surgeons.

For the Neurosurgeon he said he would use Dr. Harry van Loveren http://www.societyns.org/society/bio.asp?MemberID=176 .  He is the head of Neurosurgery at USF in Tampa.  Dr. Bartels also happens to be the head of Otolaryngology at USF as well.  Dr. van Loveren as well has an amazing resume and from what I have read he is highly sought after.

I had an appointment with them on Wednesday August 15th.  This would be the very first time I would meet them or talk to them.  I have “spokenâ€? with Dr. Bartels only through email.  I met Dr. van Loveren 1st.  But before I met him I would talk to one of his assistants, Dr. Levine.  He is a young surgeon who is very polished.  He has a great way of making you feel comfortable and explains situations very well.  He followed Dr. van Loveren from Cincinnati where he was the head of Neurosurgery before USF.  Then about 40 minutes worth of questions later I meet Dr. van Loveren.  This is a big man with a big presence.  If there is something to be said for good vibes, Sam and I got it from him.  He looks, walks, and talks like an amazing surgeon.

Immediately after meeting him I had an appointment with Dr. Bartels.  I first met his partner Dr. Christopher Danner http://www.tampabayhearing.com/PeopleDanner.aspx .  He is extremely technical and knowledgeable.  Truth be told, he is a strange personality, but I don’t need a friend, I need an amazing surgeon.  Once again, we spent about 40 minutes questioning Dr. Danner until I met Dr. Bartels.  Again, presence; Dr. Bartels has the presence of a surgeon who has seen and dealt with every possible scenario there is when it comes to AN’s and all head and neck issues.  He is an extremely experienced Dr.

I am very excited and thrilled about my entire surgical team.  All 4 surgeons have their unique talent with Dr. van Loveren and Dr. Bartels being the 2 “bossesâ€? of the team.  I have a surgery date for Thursday September 6th at Tampa General Hospital.

Thank you all for your amazing support.  It has been extremely humbling.  Its sad how it takes a very serious situation such as this to make one realize how loved they are.  I never doubted my friends, but as life gets in the way, you tend to forget.  This has really opened my eyes and I will never forget again.  Thank you all so very much!

Adrian

 

[robynabc]

HI Adrian,

It sounds like you made a fabulous decision and I can tell you feel really good about your decision.  Your doctors sound amazing and I am a firm believer of listening to other doctors.  It worked for us.  I know how hard waiting is.  After the surgery things will go faster.  IT has been almost two months for us and things are better.  Good luck.

Robyn

[Samantha n Adrian]

Thank you very much for the support.  I will keep posting my story of the entire surgical process for other newbies to read and hopefully learn from.

Thanks guys!

Adrian

[sgerrard]

Hey Adrian,

I really like the sound of your interviews. It is excellent that both of the senior doctors, each with a world of experience, have a younger doctor in tow, full of energy and bright ideas and the latest technology. I don't think you could have put together a better team - maybe you should go into sports management after this. We are all rooting for you, and the scent of success is in the air.

All the best to you and Sam,

Steve

[leapyrtwins]

Adrian -

I'm glad you've made a final decision and have a surgery date.  From what you've told us, it definitely sounds like you did your homework and have a great surgical team.  I can tell you from experience that having faith in your doctors is a very comforting feeling.  The confidence my doctors showed me gave me great confidence in myself both before and after surgery.

September 6th will be here before you know it, try to relax until then.   I'll keep you & Sam in my prayers.

Jan

[satman]

give'em hell adrian !
we are all here for you,god be with you.

[Obita]

Hi Adrian and Sam:

I know what a relief it is to have the team selected and the date set.  Congrats to you both for getting through the very stressful decision making process.

My best to you both, Kathy

[neal r. lyons]

Hi Adrian and Sam.

I know what a relief it is for you to have what sounds like a great team behind you! 

I'm happy that things have fallen nicely in place for you.

Wishing you well-Neal

[Jim Scott]

Hi, Adrian & Samantha:

Thanks for the very informative update. 

The surgical team you've selected sound wonderful and I think your confidence is well-placed.  I had the exact same feeling about the neurosurgeon I selected.  He was mature (older than me) and had a bright, young (34) assistant who I think was being 'groomed' to take over the practice, eventually.  They made a splendid team.  Caring and compassionate as well as experienced and skillful.

As others have stated, it's calming to have a team and a plan you feel good about as well as a surgery date lined up.  Time passes very quickly and the surgery day will be here before you know it.  Going into it with confidence and a positive attitude will make everything easier.  Just remember that - even without complications - recovery takes some time. Try not to be impatient. 

Adrian, know that, along with many others, you'll have my prayers for a successful surgery and a great outcome. 

Jim

[yardtick]

Way to go Adrian & Samantha,

I will be praying for you.  I have my 2nd opinion on Sept 6.  Its going to be a very eventful day in Flodia and in Ontario!

God bless you both,

Anne Marie

[linnilue]

I wish you both the best.  You two are a great team.  I am amazed at the level of knowledge and communication you share with each other and us on this site.  It is an honor to be in your "presence."  I can't think of a young couple that is so committed and eager to be involved in the care of each other.  You are blessed and we are the recipients of your grace and honor.  My Best To You,  Holly

[Samantha n Adrian]

Hi there, Sam here.

I have to share my stress today in hopes that expressing my worries will somehow help unload it from my shoulders a little. My stomach is in knots and my neck is stiff and hurts and my head is pounding. Adrian has shared the information as to our choice of doctors and decision to have the procedure performed in Tampa. He however did not share the MANY scary complications that the doctors informed us about.

The doctors told us that his AN is "cisternal" as well as "compressive" as well as "hydrocephalus". A "cisternal" tumor has extended outside the IAC (internal auditory canal).  A "compressive" tumor is touching the cerebellum or brainstem, and a "hydrocephalus" tumor is obstructing CSF drainage pathways in the IV'th ventricle. So basically they are saying it needs to be removed ASAP. The list of complications that are possible are extremely scary.

Today we have now been informed that the medical director of Adrian's insurance company does not see why this surgery needs to be performed out of network and can't be done here in Orlando. I am trying to stay calm but this truly infuriates me and I know I should not take it personal. They are just doing their jobs I guess, but I don't see why they would want to fight to stay "In Network" when it is cheaper for the surgery to be performed in Tampa anyway!? They are talking about wanting Adrian to see some other local doctors in network before giving the official "OK" and if Adrian's tumor was not as large as it is and we had time to sit around and wait I would be more than fine with jumping through the hoops required in order to be covered, but the truth of the matter is that we are out of time.

Do they think that our decision is based on vanity in the reason why we prefer the doctors in Tampa vs Orlando?  Adrian’s complications go much further than just facial paralysis. The doctors informed us of much larger complications like possibly losing functionality of his entire right side and needing to learn how to write with his left hand as well as having to rely on a feeding tube in event should the gag nerve in his throat be damaged during surgery along with a list of all the other complications that we have seen regularly listed on this forum.

Adrian has told me regardless that we will have the surgery in Tampa, but if the insurance company will not pay it, than I know the date will have to be changed because there is no way we can come up with $55k + for the costs in 2 weeks time. 

Am I wrong or over reacting in my feeling of urgency to have this AN removed ASAP?? I just watched a video on youtube where a young woman had a 4.5 CM tumor and states she was told she had 2 weeks to live due to the way it was pushing on her brainstem and from the brief MRI picture they show of her AN, Adrian’s is pushing far worse on his brainstem.

http://www.youtube.com/watch?v=3pQ7RAeHYew

[Joef]

I'm no doctor .. but to me ASAP means over the next few months or this year... yes I would take care of it .. but I dont think there is any reason to be scared into not reasearching your options!!!

these are risks for all sizes of AN's!! and the risks are larger the larger the AN.

The doctors informed us of much larger complications like possibly losing functionality of his entire right side and needing to learn how to write with his left hand as well as having to rely on a feeding tube in event should the gag nerve in his throat be damaged during surgery along with a list of all the other complications that we have seen regularly listed on this forum.

[linnilue]

Dear SAm,  First of all, you do everything in your power to fight the insurance company.  Tell them that this situation is urgent and you need an immediate physician review.  There are doctors on staff to approve this like right now.  You need to be forthright and  isistant.  The squeakey wheel does get heard and does get approved.  This is a very serious surgery and you need to be confident in the surgeons you choose.  If you have to pull out all the stops, fax them all the data you have.  It is stressful but Adrian needs to be where he feels that he is in the best of hands...and p.s. to th insurance company this is BRAIN surgery not a knee replacement.  Now, onto the "YOUTUBE" story. I think it is pure bunk.  I am a nurse and I don't beleive for one minute that a doctor would have said or known this with an AN.  I think that young woman was exaggerating ten-fold.  I just didn't hear anything in her story that that was registering "instant death."  Don't let that nonsense scare you because I really believe that this story of hers is crazy.   I wish "YOUTUBE" would pull it so as not to scare others.  This isn't the first time that "YOUTUBE" has played questionable videos.  If you would reflect for a minute on what you have read on this forum you will calm down and realize that that woman's story just doesn't ring true to what we all know.  I am so sorry that you and Adrian are in this bind but you can help him by doing some og this insurance legwork and reassuring him that in thirty days this will all be behind you and you will be on the raod to recovery, whatever his path of recovery is.  Also, remember that the doctors have to inform all patients of the worst case scenarios, they are legally held to do so.  You and Adrian are a great team so together, tomorrow you two can get this insurance situation finished.  If it takes all day, it takes all day.  And if they insist that Adrian see one of their docs, go right ahead and then you convince him/her why Adrian needs this surgery done in Tampa and show them the data.  I guarantee that most doctors will go along with informed patients.  INFORMED being the key word.  Use all your stats, all the big words and all th information you have learned from the studies and the patients on this forum.  I wish you luck and I know that you can pull this off together.  One more thing, take time for yourself to realx for an hour...get a massage or a pedi/mani and let your mind relax.  This stress will effect you negatively and Adrian needs you to be well, so take care of you too.  My Best, Holly

[Windsong]

 what authority does this person have in terms of medical knowledge re Ans that a denial like that can take place


ok so I don't know what "out of network"  means... does that somehow mean the ins co. loses some money ? 

hope you can get this all sorted as this is stress you do not need.

take care,

w.