ANA Discussion Forum
General Category => AN Issues => Topic started by: Samantha n Adrian on August 19, 2007, 06:04:42 pm
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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 (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 (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 “spoken� 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 (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 “bosses� 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
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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
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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
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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
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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
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give'em hell adrian !
we are all here for you,god be with you.
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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
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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
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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
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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
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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
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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 (http://www.youtube.com/watch?v=3pQ7RAeHYew)
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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.
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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
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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.
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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
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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
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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.
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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
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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
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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.
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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
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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.
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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
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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~
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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
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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 Connection� 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-house�. They are having a problem with this case as they have surgeons in house that “can� perform this surgery. However, I am not impressed with these surgeons. Also….the price that FL Hospital quoted me is a “cash� 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-house�. 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 state� 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 “termination� 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 live� line, but it keeps ringing in my head. Also….I was distraught regarding her facial paralysis. I didn’t think it would be so “dramatic� 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
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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)
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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
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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
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Jim. don't you find this entire 30 day thing for recovery and back to work MOST strange?
I find it exceedingly strange.
Maybe this was some some sort of form letter from some sort of binder of "return to work" suggestions for things like oh, an appendix op, maye a heart op, oh maybe some rearranging of toe bones or some such thing??? Like a decompressed brain stem is in the same league?
How on earth can a company who owns some health place who say they do An ops say ya gotta do the op here and ya gotta be back at work in 30 days or ya better "volunteer" to be gone and your job is gone? That is all totally bizzarre..........
W.
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Since there seems to be much debate on Renee's video. I personally emailed the producer and asked about that statement.
His reply, What I can tell you about the 2 weeks; is yes, that's what she told me and I believe the doctors concurred. She was in pretty rough shape.
Send me your email and I'll forward it to her so the two of you can create some sort of conversation.
I wish you a continued healthy recovery and lots of beach yoga in your future.
Todd"
I have sent my email and truly hope to talk to renee. Adrain, postivie note her face at the three year mark looked much improved. I was in aw that she was doing yoga at the beach. I have difficutly with shifting unstable surfaces and used the beach to help retrain my vestibular.
The work thing is awful! I thought my company was bad. I sent you both and email. Go to my florida.com
here's the link: http://www.myflorida.com/accessflorida/
and apply for public assistance based on your medical situation. You can qualify for a share of cost plan to help with your medical needs, depending on your income you can qualify for other assistance. This is the time you take what is out there. Please know if I can help I'm a phone call away, an hour by car and have learned the system in the last two years with my situation.
Hang in there, this too shall pass unfortunatly not without stress and frustration!
Sending prayers and love your way,
Michelle
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Thanks Michelle for the information. It looks like we will need to look into to that for sure.
Here is the bad news I received from the lawyer....
If Adrian has worked for at least 12 monthsand have at least 1,250 hours of service during the 12 month period, he would be eligible for Family Medical Leave (FMLA). But if he does not meet those two criteria, then he is not entitled to FMLA. If he does qualify, then he would be entitled to twelve weeks of unpaid FMLA leave which would be inclusive of any vacation or Paid Time Off (PTO) benefits...as most companies require that the PTO be burned off at the beginning so that there is not 12 weeks of leave and then vacation, sick time, personal days, etc. added on.
If Adrian has not worked there for 12 months, that being the case, they don't even, by law, need to give the thirty days that they have granted as "leave of absence." There is no Florida law requiring a medical release, but all company's have a policy requiring it, and that is reasonable. They need to be sure that on return he can perform the essential functions of the job with or without accomodation safely. One thing that can change the dynamics of this, and I hope this is not the case, and that would be if he ends up with a disability covered by the Americans with Disability Act which would require them to go through an accomodation evaluation. That does not mean that they have to grant an accomodation, but if there is a reasonable accomodation, then they are required to offer it. If the accomodation would be unreasonable....expensive or causing disruption, etc. then they do not have to offer it.
Whether they offer part time work is strictly up to them as they are not required to offer it unless, ADA would consider it a reasonable accomodation.
The insurance matter is another thing...if you go out of network you will put yourself at risk...as insurance companies have a lot of discretion when that happens..and that it not good for you...so you will have to have their sign off if you go out of network. You don't want to end up having to pay for it yourself.
I am sorry to confirm bad news.
H. Middlenton
Pretty much the same as Jim Scott posted earlier. (Guess you've done your homework)
I am shocked that the laws do not do more to protect this sort of thing from happening to people. As far as I am concerned I am confident Adrian can find another job after he has recovered and I do not want him worring about trying to be fully back on his feet in 30 days. How can someone truly recover when they are watching the clock ticking as to how long it needs to take? He does not need that added stress all that will do is frustrate him if it takes longer than 30 days and I do not want him doing harm to himself by trying to rush back to work if he truly is not ready.
But this is not going to get us down. We will have that surgery on the 6th regardless of this. We will find a way and we will be ok.
Sam~
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Hey Adrian,
You sure are going through the ringer. Sounds like what I went through. I had no time to spare. I was in the hospital immediately for shunt surgery and then had to wait a month for the tumor resection. You'll get through. It's a good thing you've stayed in shape over the years; that will help you during your recovery. Sept 6th is coming up fast. Soon it will be all behind you. Let me know if you need to talk......Oh and by the way, I'm flying down to Tampa from Boston to visit my girlfriend Sept 11 (oh no!!!! I just realized it's on 9/11!!) through the 18th. Maybe (if I survive the flight) we'll come to visit you in the hospital!
Paul
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Again, Hi Sam and Adrian,
I hope this get settled soon.This is really hard fior anyone to deal with on top of being told they have an An and its size....
whatever you are getting from the ins co party(ies) pls do understand that the finickity details, side issues, etc etc etc from them are simply there to sidetrack you....... most likely meant for you to scramble around dealing with minutiae (sp) that they stick into even one letter.... stay on track..... stay on what it is you want/ need/have been advised re that An ....
it was a really hot muggy day and I was pretty tired when i wrote so i came back to delete some of my ramblings lol.... sometimes i can get pretty steamed over ins co, bureaucracy and really feel for anyone who has to deal with that sort of thing....
take care and all the best.
windsong
Thanks Michelle for the information. It looks like we will need to look into to that for sure.
Here is the bad news I received from the lawyer....
If Adrian has worked for at least 12 monthsand have at least 1,250 hours of service during the 12 month period, he would be eligible for Family Medical Leave (FMLA). But if he does not meet those two criteria, then he is not entitled to FMLA. If he does qualify, then he would be entitled to twelve weeks of unpaid FMLA leave which would be inclusive of any vacation or Paid Time Off (PTO) benefits...as most companies require that the PTO be burned off at the beginning so that there is not 12 weeks of leave and then vacation, sick time, personal days, etc. added on.
If Adrian has not worked there for 12 months, that being the case, they don't even, by law, need to give the thirty days that they have granted as "leave of absence." There is no Florida law requiring a medical release, but all company's have a policy requiring it, and that is reasonable. They need to be sure that on return he can perform the essential functions of the job with or without accomodation safely. One thing that can change the dynamics of this, and I hope this is not the case, and that would be if he ends up with a disability covered by the Americans with Disability Act which would require them to go through an accomodation evaluation. That does not mean that they have to grant an accomodation, but if there is a reasonable accomodation, then they are required to offer it. If the accomodation would be unreasonable....expensive or causing disruption, etc. then they do not have to offer it.
Whether they offer part time work is strictly up to them as they are not required to offer it unless, ADA would consider it a reasonable accomodation.
The insurance matter is another thing...if you go out of network you will put yourself at risk...as insurance companies have a lot of discretion when that happens..and that it not good for you...so you will have to have their sign off if you go out of network. You don't want to end up having to pay for it yourself.
I am sorry to confirm bad news.
H. Middlenton
Pretty much the same as Jim Scott posted earlier. (Guess you've done your homework)
I am shocked that the laws do not do more to protect this sort of thing from happening to people. As far as I am concerned I am confident Adrian can find another job after he has recovered and I do not want him worring about trying to be fully back on his feet in 30 days. How can someone truly recover when they are watching the clock ticking as to how long it needs to take? He does not need that added stress all that will do is frustrate him if it takes longer than 30 days and I do not want him doing harm to himself by trying to rush back to work if he truly is not ready.
But this is not going to get us down. We will have that surgery on the 6th regardless of this. We will find a way and we will be ok.
Sam~
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Sam and Adrain,
File for ssi though social security, and children and family services for the rest. If you two live together you are not family, adrian is his own person. So when it asks for "family or household" answer just for Adrian. Hope that helps. Sometimes the system truly sucks!
I know there is help out there it is just a matter of finding it and knowing the rules.
Also, keep in mind that after surgery Adrian can apply w/ vocational rehab which will help with any accomodiations, schooling, hearing aids, and educating his employer and helping him obtain employment if needed. They have paid for my hearing aids, and a masters program to help me get back to work.
Also, I have gone to the my house representative to fast track some of my paperwork. They have been great at helping navigate the state system.
Go rattle those trees until all the benefits are upon you and Adrian!
I'm here if you need me.
M
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I am shocked that the laws do not do more to protect this sort of thing from happening to people.
Politicians write the laws and businesses are major contributors to politicians. So, when the interests of business and ordinary Americans are in conflict, the ordinary American usually ends up losing. Hence, the 12 months employment/30-days stipulation in the law that applies to Adrian's situation.
As far as I am concerned I am confident Adrian can find another job after he has recovered and I do not want him worring about trying to be fully back on his feet in 30 days. How can someone truly recover when they are watching the clock ticking as to how long it needs to take? He does not need that added stress all that will do is frustrate him if it takes longer than 30 days and I do not want him doing harm to himself by trying to rush back to work if he truly is not ready.
I agree. Full recuperation time-frames from AN surgery variy widely. At 30 days post-op, I felt good but was far from 100%. That can take months. Finding another job appears to be Adrian's only realistic option. However, as other posters have mentioned, there are all kinds of state and government programs out there for folks that don't qualify for 'poverty' status but still need some kind of assistance for medical procedures and/or rehab. I hope Adrian can find some of that help.
But this is not going to get us down. We will have that surgery on the 6th regardless of this. We will find a way and we will be ok.
I like your attitude Sam. I believe you two will be O.K. You have a lot of people you haven't even met rooting for your 'team'. :)
Jim
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As for the youtube video…..I didn’t know what to think. I was a bit skeptical of the “2 weeks to live� line, but it keeps ringing in my head. Also….I was distraught regarding her facial paralysis. I didn’t think it would be so “dramatic� 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
Sam,
I just want to cry for what your company is doing to you. I hate it when insurance in self insured. All rules go out the window. They do not have to follow state rules. I am self employed and I dont' give a damn what a law says, How do they sleep at night? I only have a part time employee but I could never ever write a letter like that to an employee of mine.
You should be able to get cobra for your insurance if you were to be terminated so at least you will be able to keep your insurance. I hope that is true.
As far as the video- Now, granted I did not see it but two weeks does sound exagerated. My son, Eric had a 4.5 or more tumor. It was completely pushing on the brainstem and pushing to like half of what it should be. The doctor said, " We need to get this out", and we heard some worse case stuff. " And they waited over 6 weeks. They said we had to do it soon but it had been growing there for a long time so we had some time. You just don't want to wait months and months. I doubt that you are in any really really danger of waiting a little longer. Having a good surgeon is more important than rushing too fast. Once again your doctors will tell you. Please know that you are young and healthy and your chances of anything really bad happening are low. Listen to your doctors they will know.
This is why I did not watch that stuff before surgery. I wanted the perfect picture of all the good stories in my head. I wanted good Karma before the surgery. I know that sounds silly but it is how I do it.
I know you will do fine. By the way, Sam, You are so supportive. You guys are so lucky to have each other.
I am so sorry that your company is so heartless.
Americas religion-Money.
Robyn
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Hi,
I am still curious as to how a company for which one works, that owns a medical centre in orlando and is self insured thru fl hospital, can deny a treatment plan elsewhere? Is this a conflict of interest?
That does raise my eyebrows and begs for some answers for anyone else maybe finding themselves in the same situation .....
W.
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!
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I'm always fascinated by how the machinery works down there.
Self insured plans are here too. (either purchased on one's own or a combination of payments monthly by employee plus employer for some plan the employer offers when one gets hired)...
just about everyone I know who has short term coverage for health situations and then long term situations, pretty much pays a premium every month, every year for that kind of coverage.
I haven't heard of anyone up here who works for some employer and gets told they can't go for treatment somewhere because the employer owns this other place they want them to go to? And then adds oh by the way, you have 30 days to recover from a brain tumour operation or you have to volunteer to resign? Maybe I missed something in what I read. But that's the gist of what I am hearing.
W.
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Windsong -
I don't think you missed anything. Your summary of the insurance situation, from what I understand, is right on the mark. Unfortunately, as Brucifer said, Adrian's company can do this. In my opinion, it's not ethically or morally right, but they can do it.
I'm just hoping that Adrian and Sam can prevail in this bad situation; I think we all are. Let's keep them in our prayers and hope for the best,
Jan
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I am wondering if they used that line "voluntary termination" so they make you feel like you have to resign so they don't have pay unemployment. I would at the very least tell them they will have to fire you. My thought is that if a conpany is this heartless they will lie about what you have to do . I don't see how you have to volunteer to resign. I wish I knew who these people are. I understand that you may not be able to say.
Robyn
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Trust me Robyn I feel the very same way. I told Adrian even if you are well enough in 30 days to go back I myself would not want to return to them after the way they have been through all of this. :(
AND...
Wow….. What a rollercoaster ride of a morning.
Update on the insurance issues and coverage.
This weekend Adrian received a call from his case manager regarding the letter forwarded to them from Dr. Bartels stating Adrian’s deteriorating condition and urgency for tumor removal. She sounded distraught and was concerned and wanted to see how he was feeling and said she would immediately forward this to the heads of the insurance company.
Their first question was “Has the surgery date been moved up?�
We explained that it hadn’t and that it was still the earliest date that we could be scheduled. (Just seems like they were missing the whole point of the letter)
So this morning Adrian received a phone call from the insurance department on his way into work. They said that they have a doctor here in Orlando that says he can treat Adrian’s tumor with Radiotherapy and that Adrian had an appointment with him at noon today.
When Adrian called me to tell me this all I could do was laugh! I thought to myself, what kind of grade school doctor are we dealing with here?? That is absolutely above and beyond absurd!
Adrian’s initial reaction was of course that he did not want to see a doctor that could even make a statement like that. But I told him that the insurance department must of informed him wrong and maybe said 4mm instead of 4cm. I told him he needed to go see this doctor that they have recommended and that hopefully it could work to our benefit. And sure enough it did!!
Upon looking at Adrian’s MRI the doctor said that his tumor was extemely serious and needed to be removed as soon as possible and Radiotherapy was out of the question. He told Adrian that he had no where near the experience that Dr. Van Loveren had in Tampa. Adrian asked him if he could please report this to his insurance company and he said that he would. So I believe that now they truly have no excuse to deny his coverage for Tampa. I feel like this has sealed the deal on proving to them that Tampa is the way to go.
So keep your fingers crossed for us!!!! :)
Sam~
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Sam & Adrian,
Reading your story. Just need to send all sorts of positive thoughts from Montana to you. No one experiences are the same but we all share the worry with you. Stand up for what you know is right and follow what you believe is the best for you and somehow it should all work out. i was told 4 days before surgery that my insurance wouldn't cover my "out of plan" surgery". Well, we still made it happen and I went back to work 3 1/2 weeks after surgery. I know that we all wish we could take some of the worry away. Hang in there.
Mary
2cm x 2cm Middle Fossa HEI Dr Brackmann 5/24/05
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Dear Sam and Adrian, You see, there really is a God!! I think that what you two accomplished today was remarkable and thank God (literally and figuratively) for the secretary's mistake on the tumor size! It's almost like a game isn't it? Only it's not fun even though you are winning. And you really are whether you perceive it or not I and I think everyone else sees it. Every time I read your posts I am very disturbed at the way we are all controlled by insurance and politics in this country. I thought of both of you all weekend and hoped that you would be able to get to Tampa. I know the job may have to go but it's their loss for losing such a great, well rounded and educated guy with a girlfriend of the same credentials. My husband and his partners are always looking for good sales people and they have alot of connections all over including Florida. So, if after this is all over and you need a job, just send me and email and I will pass it on. What a shameful bunch you work for. My fingers are crossed, I hope your answer comes soon this week so that you can spend some quiet time together just to relax and enjoy your time before surgery. My Best, Holly
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Adrian & Sam:
I'm delighted to learn about this somewhat strange turn of events that appears to work in your favor.
I also find it incredibly ironic - but quite fortunate - that someone in the insurance office mistakenly described Adrian's AN as far smaller than it actually is...which started a chain reaction that had a doctor in Orlando claiming that he could radiate it....which prompted Adrian to see this doctor....who looked at the MRI scan and realized it was pushing on the brainstem and obviously not amenable to radiation....and also decided that Dr. Van Loveren was far more capable to operate on Adrian's tumor. That this doctor agreed to inform the insurance company of his newly revised medical opinion is great! I agree that having the surgery done, on schedule, at Tampa looks like a 'go' at this juncture.
I''ll be waiting (with the others) to find out how this saga - which is what it is becoming - finally ends. My prayer is that it ends with Adrian having the surgery on schedule, with the surgeon(s) Adrian wants and, of course, a totally successful outcome.
I applaud the shared tenacity (and obvious affection) you two share. It serves you well. :)
Jim
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Sam & Adrian -
Jim Scott's last post says it perfectly. I totally agree with his sentiments - I couldn't have said it better myself.
Jan
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Adrian and Sam:
Good grief!! I was gone a week and cannot believe what you two have gone through. I have not see a roller coaster of events like this since I came on the forum. I also cannot imagine the stress this has caused you two.
The countdown begins!! Congrats, Kathy
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Hi…Adrian here. WOW….has the fiasco that is my life received so much attention! This forum is amazing…..so many people that I’ve never met are so interested in my life……very humbling. I know I say that often, but it’s become more and more true with each and every post….Thank you!
So….yesterday was interesting. I saw the local doctor in network who is apparently held in very high regard. He was never told my age, and he never asked my age when he answered if he can do radio surgery on a 4cm tumor. He answered yes, because the truth is, he can. He figured he’d better meet me first to assess the entire situation. I met with his assistant first who put me through different test….balance, reflex, etc. Then I met the surgeon…..he sat me down and tried to have a very serious talk with me regarding my tumor. I had to stop him and use technical terms so he understood my knowledge of this situation. He stated that if I was 84 he’d do the radio surgery, but not for a 34 year old. He told me that he stood in the hall looking at my MRI and expected to see a person with an eye that could not close and a very droopy face. He said a few times that it was amazing I am the way I am. He also said that he has a lot of respect for Dr. van Loveren who has more experience than he especially regarding large tumors. He also said that he recommends Dr. van Loveren as he is highly sought after Neurosurgeon. He stated that I was in great hands, especially given my situation. So….now the only challenge is to get the notes to my medical center. The MD said he would have it yesterday afternoon…his staff says 5 days because of the 3rd party dictation company. I hope that this is the “shot-in-the-arm� I need.
I’m still having surgery on the 6th with the team I had mentioned, Van Loveren & Bartels, I just hope the 55K for surgery and approx 15K post surgery does not have to be paid my family and I. I’m not too worried about a payment plan for Tampa General, but I have a very hard conscious of making sure the surgeons and the anesthesiologist are paid upfront.
I apologize for not having enough time to post and respond to private messages. This is my last day for work before medical leave and I will have more time. I want to thank you ALL for your support and wonderful words of encouragement and comfort. I am always amazed by this forum.
I will talk to everyone soon.
Thanks,
Adrian
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Brucifer,
You were correct in stating employers in US do not have to give medical insurance. My store manager actually told me brutally "medical insurance is a gift from us and we can take it away at anytime". Its a shame there is no more middle class people anymore .Just the very rich or the very poor. And both make out with our government better than us middle class. J
Adrain and Sam, So glad it seems like things are turning around your way. I thought of you guys all weekend. Adrian just concentrate on your surgery and the wonderful team that will work on you. Heck my Husband had a whole bill written off for him and another one reduced in half. So we pay $20 a month for the rest. Don't care if it takes the rest of our lives. Whats important at this time is getting rid of your AN and having a great recovery.
mema
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Wow! I just read this whole thread. This reads like a script right out of a movie. I was thinking that Michael Moore would love to add this whole scenario to his move "Sicko" (which I haven't seen).
Sam and Adrian, you two are incredible! I hope you two are together forever.
I am also appalled by the 30 day thing that your employer has imposed upon you. When I had my hysterectomy, I was told I could return to work in 6 weeks, so I guess by your employers criteria I would have been out of a job if I didn't crawl in to work after 30 days. This has been quite a few years ago, but I can't imagine that having that kind of surgery now would make any difference as to how fast you heal. Some surgeries have a much faster healing time because they have perfected more non-invasive types of procedures but certainly not for everything. Certainly not for microsurgery of the brain, for God's sake. This policy is just so...ludicrous. It's hard to even put it into words. Does the term MAJOR MEDICAL mean anything to them? Good Grief, you can make things worse by going back to work too soon. Oh my, a person could 'vent' on this for days. Doesn't do any good, however. Where's 60 Minutes when you need them?
It sounds like everything is going your way for your place of surgery and surgeons, however, and that's wonderful. I, too, will be thinking about you and hoping your surgery and recovery are as uneventful as possible. You two sound like wonderful kids (well, you're kids to me! Same age as my son.) and I wish you only the best. I am so sorry you have have to go through this. Not only the physical but then all the bureaucracy of the insurance.
My best to you,
Sue in Vancouver WA USA
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Wow what a day you guys had. So glad the radiosurgery experience seems to be working in your favor. Adrian, in all seriousness. Please contact dcfs and apply for benefits. The state will pay for your surgery if you're insurance does not and take that stress and worry off of you. Wishing you both the best and keeping you in my prayers.
Hugs M
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Yep, Batty is a good one to have on your side!!
6 weeks off must be the gold standard for a hysterectomy. I was off 6 weeks too. No problems with my disability insurance on that one, nor the total hips......BUT the AN surgery was a different story.....
I had sent in my paperwork the day before surgery to get the ball rolling. Sure enough, they called the day after I got home from the hospital and asked when I would be returning to work!!! My surgeons had put "to be determined" in the return to work date spot followed by, recheck in one month. Well, that did not go over very well with the twit (I know, he was just doing his job) that had not even looked up what kind of surgery I had had before he called me. His mistake.
So, he asked me again what my best guess was as far as when I would be returning to work. Now, my Irish was up. I had just had surgery 4 days before, I had not slept, my neck hurt like heck so I let the poor guy have it: "I do not know. This is the first hole I have had drilled in my head AND my belly has 4 fat harvest sites where they tried to find enough fat to fill the hole in my head AND I have a tourniquet wraped around my head so everything stays put. Can I get back to you after my one month check up?" He said: "I was going to suggest that Kathleen.............."
GOOD LUCK ADRIAN AND SAMANTHA!! Kathy ;D
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Hi…Adrian here. WOW….has the fiasco that is my life received so much attention! This forum is amazing…..so many people that I’ve never met are so interested in my life……very humbling. I know I say that often, but it’s become more and more true with each and every post….Thank you!
I’m still having surgery on the 6th with the team I had mentioned, Van Loveren & Bartels, I just hope the 55K for surgery and approx 15K post surgery does not have to be paid my family and I. I’m not too worried about a payment plan for Tampa General, but I have a very hard conscious of making sure the surgeons and the anesthesiologist are paid upfront.
Geez, I take a few days of vacation with the family and all heck breaks loose!
Adrian, I would not worry about the surgeons, I would bet they get paid either way, the hospital finance department would deal with the payment plans. But more important, it sounds like Bartels stirred things up enough, and that it will work out in the end, since the company doctor has basically said no way can he do it.
As for the job, just show up one day in a couple of months, when you are good and ready, and apply. They might just have an opening. ;)
They certainly seem bound and determined to take you on a roller coaster ride, but it looks like this forum has done a great job keeping you and Sam in good spirits as you plough through it all. It is destined to work out great in the end, so hang in there, you are on the home stretch now.
Steve
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Hi I am Renee"that girl" from the Youtube video and wanted to reply to the post about this video.
First of all, (to the nurse) I respect your opinion. However, I am the one who has lived my life. It seems unfortunate that you do not honor that all people, all bodies and all situations are different. All AN stories are different....I am also not sure why you think the video is "scaring people and should be taken down?". I have more than 100 people contact me, with and without AN that have felt hope and inspiration :) The whole point of this video is hope and self acceptance.
I intuitively "got guidance" that something major was going on in my brain since age 20. I had Tried to get diagnosed for 10 years, being written off as a beautiful woman with "pyschosamatic problems"... I stopped even tryng to get help until my body told me it was "dying". For months, I went through many misdiagnosis again but kept going until I got the MRI... and then saw the tumor.
I had so much pressure in my head and facial nerve loss at the time that my doctor, though I had serious insurance problems, moved mountians so that I could have the surgery done within weeks of diagnosis because they did not know what was going to happen soon....My whole right side of my body was becoming numb (I was walking on crutches) because my tumor caused my head to shift it's weight and was putting pressure on the cranial nerves. My immune system was so slow that I developed major urogenital issues. Many functions of my body were negatively effected. I could not walk straight at all. One week before the surgery I lost vision completely for four hours and was rushed to the ER, vomiting uncontrollably. WHY? of course I have no idea but this is how MY Body was reacting. No two people are the same!
When they removed the tumor, it was the only thing holding my facial nerve together and my doctors- who have done MORE AN surgeries than anyone in the US said this was THE most aggressive tumor they had ever seen. It was stuck to the brainstem.
I share all of this because: I was told that since my facial nerve was severed that the odds were not so great of having normal facial function. i was told that it takes 14-18 months for the nerve regeneration at that level. However: within 6 months, through prayer and visualization the nerve returned greatly. Do I have total function? NO. But I am self accepting and radiant anyway. Most peopel donot even notice unless I bring it up. I still did some modeling after the surgery and six months later was doing 15 miles, despite that I had a very diffcult time recovering vestibular wise. Many miracles are possible!!
I was intorduced to someone who is involved in this community. She gave me this link and I am glad that I visited so that I can communicate clearly My Story. I do not visit these links. I wrote a story for the ANA association that was published after the surgery that I felt really good about sharing. My intention has always been to inspire. I let go of the AN on all levels. I do not want to seek out the past. I have moved on with my life and enjoy a very rich life despite my "disabilities". I choose to invest my time in health and feel that is the key to REALLY recovering.
Many blessings and Much compassion to all of you whom have had the AN experience. I truly honor you and hope that you have been able to recover inside and out.
renee airya
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hi renee and welcome. It IS good to see you here and thank you for sharing your story with us. You are absolutely correct that no 2 AN journeys are the same and the fact that you are willing to share your story, your video says a lot. You have endured a tough road and know that I thank you for sharing your story with us..... as each and every AN story is not only unique onto itself.... but does help those newly-diagnosed with their journey.
Again, welcome.
Phyl
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Renee, I too am glad you have posted. I hope you will continue to visit the forum. Your story is very inspiring, and offers great hope to others who may experience a severe case of AN like yours. I understand that you have moved on with your life, I know I hope to soon as well. But you can still visit the forum from time to time, to help others find their way through and show them that there is always hope and life after AN.
Steve
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Hi Renee,
It was a lovely surprise to come here and read your post in this thread this morning. It was a reminder that synchronicity continues to happen. Thank you so much for sharing more of your story behind the video and for your comments about the post An journey.
It took me many years to get my own An diagnosis (many reasons behind that but one was that I "looked ok"). I remember that in the immediate days after getting the diagnosis I told myself that I was not to dwell on the delay of years but I was to spend my energies finding out how to treat it and make a choice as I had a couple of choices. For the most part I avoided thinking about the past although now and then I'd wonder how I could intuit my tumour and even write down where it was with a diagram in my journal five years before it was finally found on an mri. And now and then post treatment I found myself mired down in the past (usually when symptoms still plagued me).
But the thing is, as you have pointed out so well, (thank you) that our energies are so much better when we "let go of the past" and focus on now and all things that can help us get better. I believe true healing happens when we focus on all things that help in all areas: mind, body, and spirit. Recently, I decided that rather than pay lip service to this approach and rather than dabble in it now and then, that I'd be better off if I went beyond the physical ( changing diet, exercising, taking the right meds etc) and began to devote serious time to the emotional, mental, spirtual in order to achieve a balanced approach and have a balanced life. Thus I am now doing not only visualization, relaxation, meditation (along with the physical) but am also working on the spiritual or soul part of all this. It's not easy work. It's hard, actually.
When I read your post I see that this is something you have been doing and you have done it well and reaped the benefits. Plus your video and this post spreads out that wellness to others. I am grateful that you shared your story and your positive energies.
It is motivational and inspiring for the rest of us.
All the best and many blessings.
Windsong
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Hi, Renee:
Thanks for your informative post that helps explain what happened to you, as related in the video in question (I've watched it).
We all understand that every AN patient is an individual and our AN experiences are always different. Apparently, your AN had grown to the point where it had severely affected your brainstem - with the resulting symptoms you described. I have read that, if left untreated, this is exactly what can happen. I also acknowledge, based on my own surgenon's statement, that an untreated acoustic neuroma tumor, due to it's location, can eventually kill you. I'm very impressed with your recuperative powers and the great progress you've made in regaining facial mobility since your surgery.
The only reservation some of had with your on-camera statement regarding your imminent demise is, due to the fact that acoustic neuroma tumors are rare in the general population, little is known about them - even to many physicians - and we don't wish to see misinformation being spread. With the reach of the internet, misunderstandings can become 'facts' in a matter of days. I believe that you probably were in danger of dying fairly soon had your AN not been discovered and treated, but the unequivocal statement that you had "two weeks to live" seemed a bit extreme, even taking into account your condition at the time. For someone just diagnosed with an acoustic neuroma or their family/friends, to see a compelling AN patient, such as yourself, make that statement, gives it immediate credibility. The basically 'uninformed' person,( knowing little or nothing about acoustic neuroma tumors) then assumes they or their family member is just days away from certain death, when the AN patient in question may have a very small tumor and be nowhere near any danger of dying. We see this happen on this forum; newly diagnosed AN patients - sometimes with very small, easily treatable tumors, almost paralyzed with fear that they are either going to die within weeks or 'become a vegetable' now that they have this AN thing in their head. Yes, we can and do reassure them this is not the case but you can see how 'AN tumor equals rapid death' rumors can spread.
This is the issue that motivated some of us, including myself, to question your on-camera statement that you only had two weeks to live. We aren't doctors but we try to keep our statements factual and tend to question anyone with an acoustic neuroma tumor that seems to be exaggerating any facet of their condition, if it cannot be medically verified and has the potential to frighten other AN patients unnecessarily. We all know that an acoustic neuroma tumor is serious and definitely can kill you, if left untreated. That is a fact. You likely were in danger of imminent death, but your unambiguous comment (in the video) of having "two weeks to live"' just seemed to be a bit over-dramatic, and our collective comments reflected our skepticism. I can say without hesitation that I regret any misunderstanding that may have been generated by any of the comments made here relating to that particular issue ("two weeks to live") of the video as we admire your courage and splendid recovery from a very serious, life-altering medical crisis that we've all shared, in one way or another.
Our best wishes as you continue to recover and pursue your dreams, Renee. We wish you well. :)
Jim
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Hi renee ! Welcome !
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What surprised me in this thread is that there even were comments questioning the veracity of the statement regarding two weeks. I didn't doubt or question that bit at all when i watched the video. For one I trusted that a doctor had said that. Where else could a comment like that come from, really? For another I didn't even find it dramatic as I know that depending on the location, the displacement, the effect on the brainstem, above all the symptoms too, can all lead to a prognosis which can be shocking. I viewed the video as demonstrating many many things. From no diagnosis to getting one at a time when symptoms were escalating greatly. The focus as I saw this video was that from this beginnng Renee had the right treatment for her, came out with side effects, but then worked on healing and getting better.
I didn't expect a treatise on Ans at all as I saw this video more as an inspirational offering on how one person could overcome what had to be an astonishing and shocking thing personally. Let's not forget that ten years went by before this point. This wasn't meant to be a full length movie I figured but a clip that showed how one person overcame a serious situation and showed a beautiful person with bucketsful of spirit and good will.
It's a "real' thing that some Ans ( and let's remember that all Ans are different) behave in ways that can't help but be dramatic.
Although the details are different, and if anyone is strong enough, you can go to Val's site. www.racoonhouse.com . If you click on the entry of Oct 13, 2004 you can read the symptoms that Val had only two weeks before she passed away on Oct. 20 not two weeks later. Yes this is dramatic.
The thing about Ans is that for the most part no one dies of course. But in certain situations when one looks at the total picture in some individuals the risks rachet up considerably. That's a reality.
Is this scary for some? Sure it is. That's a reality too. Is there enough out on the net to reassure most of us? Most assuredly there is.
Is an An benign? Oh yes (except for the small percentage of some which aren't). Are the effects of hearing that one has an An benign? Oh, well no. And are the side effects both pre-treatment and post-treatment benign? Well for some they are; for others they are not.
The beauty is that most of us prevail, most of us get better, and some get better not only physically but also in many other areas of their being.
It's fact that some things in life are scary. It's also true that one can overcome any fear.
Getting back to the two week statement. I have to trust that that was Renee's reality. The marvellous thing is she overcame it and has a new one which is most positive. And that is what the video presented.
All the best everyone and good healing too,
Windsong
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Renee, the good point is... regardless if 2 wks or more or less... you are here and here to share with us your AN journey. I'll take that as a good thing :)
Again, welcome.
Phyl
(FYI all....as important as it is to welcome Renee and what she has endured, this thread was originally noted regarding Sam/Adrian's journey. Just a thought.. should we start a new thread for Renee to discuss her journey/video and get this one back on track re: Sam/Adrian? Anyone want to start it, please do.... Sometimes, mixed threads occur and both are important topics of conversation (IMO). thanks. Phyl)
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Hello everyone….Adrian here. Wow….what a roller coaster ride again today. I had to go to the medical center this morning and I spoke with my friend. They were waiting on the report from the doctor I saw on Monday. He was getting very frustrated because this entire case should have been approved by now and he didn’t have much control. He truly is stuck in the middle.
I received a call at about 10:30am from my case manager. She had spoken to TGH (Tampa General) and they said 70% of the cash price must be paid upfront. I told the case manager that when I asked Dr. Bartels about that, he didn’t say anything, but wrote the very strong letter that I posted on Friday. She said she would call TGH back and express that Dr. Bartels did not tell me anything regarding pre-payment. She then called me back in less than a minute that my friend received a “very good� email and would share the particulars when he sorted through the information.
At about 12:30, I received a call from my friend who then conference called my case manager and both told me ……….MY CASE WAS APPROVED!!! He read me an email from the insurance company authorizing the surgery. With all of the emotions, especially of the past couple weeks, I broke down. I couldn’t believe it….he said…..100% APPROVED! So….that is a huge weight off my shoulders…..HUGE! I can’t even call my parents right now as they are on an airplane from Europe. They arrive here in Orlando at 10:50pm. At least I’ll have some amazing news to share with them!
Renee….I’m very glad you wrote on my post. Welcome to this amazing forum. It has been an amazing source of support, comfort, and education for Sam and I. She found your video and showed it to me. It made me a little depressed that I may very well have some of the same post-op symptoms regarding facial paralysis. Hearing what you were going through before surgery gives me hope. I don’t have anywhere near your issues. It also makes me very sad to hear what you were going through and also very impressed how far you’ve recovered through lots of will and hard work…..I commend you! You are correct….no two AN’s are alike. Videos on YouTube can be very skeptical….too much sensationalized BS on there. Don’t be offended by the comments from people on this forum. Everyone is truly amazing and extremely caring. I’m glad you came on a posted your side of the story and hope you stay and keep giving advice to others. I cannot tell you how much Sam and I appreciate this forum. I know Sam will be sending you a personal message when she reads your posts.
Thank you everyone…..I will keep updating as my surgery progresses. Your support and encouragement has been amazing! Talk to you soon.
Adrian
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Adrian and Sam...
congratulatory Huggles!!!!!!!!!!!!!! YAY!!!!! Red tape is done!!!!!! Onward to new wellness for you! Congrats on the great news! Hang tough!
Phyl
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Dear Adrian, I just got home from picking up my 1 year old grandson, who makes me laugh all the time (thank God for him) and when I read your post I first got chills and I too cried out of joy for you, Sam and then for your parents. Their joy with this news will be overwhelming for all of you. Congratulations, job well done. Now onto the most important part of this story and then to a life filled with joy and happiness and this will be your past. We are all here to support all of you in your recovery. Bless you all, Holly
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Well, it's about time you guys had some good news! Congrats to you and your advocates for beating the system and fighting the good fight. Hopefully all you will have to worry about now is getting well. That should be the easy part after all you've been through. It's a crazy world, huh?
Thinking of you in Vancouver USA
Sue
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:)
What fabulous news you now have! ! ! I am so happy for you Adrian. :)
This is the happiest of best news to hear!
Your reunion with your parents now has a shining light on it and you can all have a more relaxed time now and feel good.
Warm wishes to you and Sam and your parents.
W.
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Adrian/Sam:
CONGRATULATIONS! This is splendid news, of course, and makes things much easier for you both, I know.
I'll simply remind Adrian that we care about him and want only the best for him. Sam knows we all admire her and are confident that she'll help Adrian get through this no matter what may happen, post-op. Remember, some AN patients do just fine. I'm one of them - and I sincerely hope Adrian will be another.
The YouTube AN video issue has been throughly addressed and was effectively moved to a new thread for those who wish to comment further. This thread 'belongs' to Adrian and Sam, especially now, with the fabulous news that Adrian has been approved for his surgery, where he wants it by the doctors he prefers. I hope we can keep it that way.
Jim
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YES!!!! We are so happy and thrilled and overjoyed and ecstatic and relieved and many other emotions jumbled into one now that surgery has been approved. Like Adrian said HUGE load off of our shoulders now! ;D
I just wanted to say it again THANK YOU! All of your love and support as well as prayers and loving thoughts have pulled us through and now we have proof that good can prevail and that will and determination payoff in the end.
The same will go for our surgery I have no doubt! It is truly amazing how thankful we now feel, like the surgery is just the side part of this all, and I think that is largely due to the fact that we both feel so comfortable with our team of doctors! :) That along with the fact that our blood, sweat, & tears (as well as our AN family) has pulled us through this so far we now feel like together we can overcome it all.
So again, thank you, THANK YOU.... truly deeply thank you. Even though we unfortunately may not respond to every single post or personal message, we DO read them and appreciate them and have immense love and respect for all of you. :)
We will still keep you posted on surgery day and post op successes!! ;)
xox
Sam~
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so folks... would you agree that Sam and Adrian are bouncing off the walls in joy just a wee bit? Yep... I think so! ;) and rightfully so! :) Looks like the walls can take it!
Sam/Adrian, now that one big monkey is off your back, lets get you all on the fast track to being a "postie" (post-treatment). Looking forward to seeing you on this "side" of your AN journey.
Again, congrats! :)
Phyl
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Wow, what a great about face on the insurance question! It is wonderful that you are sharing such good news with us, we all get to enjoy it along with you. 8)
100% Approved. It sure has a nice ring to it, I must say. Congratulations, take a well deserved rest, you have done great.
All the best, Steve
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I have been reading your posts. What a ride you've had! I am so happy for you that your surgery will be 100% covered. Now you can focus on your upcoming surgery and recovery. We will share a surgery date. The day of your surgery will be the two year anniversary of my surgery. I will be sending you all my best wishes on your surgery day.
Jean
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Adrian -
Congratulations! 100% coverage - what a victory - and a sweet ending to a big battle! I'm so glad to see that your, and Sam's, hard work has paid off. Take the next few days to relax before your procedure. Like everyone else, I'll be anxiously awaiting news from Sam - and eventually you - on how your surgery goes.
All the best,
Jan
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Adrian and Sam,
Thank you so much for sharing this wonderful news. God is faithful to answer our prayers!!!!I am glad this hurdle is behind you and will join the others as we lift you in prayer for a successful surgery and great recovery.
Love and prayers,
Lynn
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Adrian and Sam,
So glad that the insurance issue is in the past. My prayers will we with you on Sept 6th. My hubbys yearly visit to his surgeon at Tampa General is Sept. 11th. If your still there and up to it would you mind a visit from a fellow AN'er.
mema
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My (((HUGS))) and prayers are with you - from Canada ....
Good luck - you two are truly an inspiration!
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AAAAAAAAAARRRRRRRR!!!!!!!!!!!!
Good job you two--sticking with the pirattitude and beein' the squeaky rudder pays off! Bet that puts a lil swash back in yer bucklle!! Soon you'll be a postie, Adrian and we'll hafta find ye a job aboard the PBW as ye'll have some time on yer hand whilst ye recover. A recovery Cruise to the Caribeean. Sound Good?
AAAAAAARRRRRR!!!!!!!!
Capt Deb 8)
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In 72 hrs, Adrian will be a "postie" (post-treatment) and onward to wellness! Sending wishes for you all during the process.... and know that I am thinking of you all.
Phyl
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Sam and Adrian so good you got the relief call from the insurance company. I'm sure at this point you are preparing for what is to come. Please know that many here are rooting for you and sending prayers your way for a speedy recovery!
God bless,
M
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Hello all….Adrian here. Well…..its the 9th hour…..the 11th hour will be tomorrow night…lol :) Well…..we have to be in Tampa tomorrow at 11am for pre-ops. Then as you all know, surgery is on Thursday the 6th.
I cannot begin to say Thank you to everyone. Those words are just not enough. You ALL have been so supportive and an amazing source for comfort and education. A huge lesson that I learned from this is you have a choice of surgeons. For all the newbies…..DO YOUR HOMEWORK! There is not better feeling than trusting your surgeons. I am certain that money cannot buy better surgeons than the ones I have. Last Wednesday Dr. Schwartz from House Ear Clinic called me to check on me. I was ashamed that I haven’t contacted them through all of the hoopla lately. I apologized to him and told him that because of insurance and logistics I decided to have my op in Tampa. He quickly asked me if it will be Dr. van Loveren, to which I replied yes. He told me that I will be fine. He asked me who the head and neck Dr. is and I said Dr. Bartels. He told me that I was in great hands and that I had a great team. There are only a few docs in Florida that he would recommend. That happened on Wednesday evening which was the icing on the cake when I found out my insurance approved my surgery. I only have great things to say about HEC, they were very attentive to me without the sales pitch. Dr. Luxford even called my Sam on a Saturday morning at 9am (6am California time) and called back at noon when I told him that she decided to sleep in. Very honorable!
There have been so many posts and personal messages that I have not replied to. I want EVERYONE to know how much I appreciate them. I have had too much going on and am very ashamed that I haven’t replied. My sincere apologies.
This forum is amazing. You ALL have restored my faith in people; faith I lost a long time ago. I truly am speechless.
I look forward to starting a new post…..a “postie� post….HA…say that 10 times fast. I truly cannot wait to be on the other side of this and want to start helping newbies.
Take care all, and I will post next as a postie. Thank you ALL once again.
Adrian
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Good luck Adrian and Sam!!!
We will be watching for the postie post!!
Kathy
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2, 4, 6, 8,
All of us can hardly wait,
4, 6, 8, 10,
We all root for Adrian!
Go team! :D
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Good luck! It will all be fine and we will see you on the other side!!!! Sam, let us know as soon as you're able how it went!!!
Hugs!
Kathleen
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Wishing you all the best, Sam and Adrian!!!! Keep us posted!
Sending lots of hugs your way,
Susan
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Cheering you on from Vancouver, WA.
Sue
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Good luck to you from Ohio!!! It's a great feeling to be a post-op poster! Sending good thoughts your way........
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Good luck from Michigan!
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Sending sunshine from So. Cal.
aa
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Best wishes bro!!
I'll call you when I get to Tampa Sunday afternoon. I'm coming down in the middle of hurricane season! I must be crazy!!
Paul
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Hello Adrian and Sam,
I read everything daily, but don't post much! I wanted to wish you "God's" speed and well wishes for a greater than great outcome!
From Jackie in Beaverton, Oregon, where the sunshines too!
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I got your back,all the way from big D[dallas] .
you will be just fine.
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Sam and Adrian.
Sending Big Wishes for the very best from the Big Sky State(that would be Montana). You'll do great!
Mary
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To Sam and Adrian,
Sending good thoughts to you both from Redondo Beach CA.
Lainie.
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Our faith is in the Lord.
Jersey Joe
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You are certainly in my thoughts and prayers. We all will be anxiously awaiting good news!
Sandra in SC
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My thoughts and prayers are with you both. You two are a great team and I know you will do this well together. I like everyone will be waiting patiently to hear of any news. Bless you both, Holly
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My husband and I will be praying for you.... not just tomorrow but through recovery ... that you both will have all the strength you need.
Margaret
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Peace and Love to you both from Columbus, OH!
Lisa P.
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Dear Adrian & Samantha,
Adrian, sorry I am so late for joining in. Please know that I wish you God speed and great results from your surgery.
Samantha, when you check the board after Adrian's surgery, please know that you have both been in my prayers and will continue to be during Adrian's recovery.
My surg. was on Sept. 17th and I'm doing great as I am sure Adrian will too. He is young and strong. I am sure that will greatly hasten his recovery.
God be with you and hold you in his loving hands.
Claudia
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Thank you all so much for your love, thoughts, prayers, and good wishes.
Adrian was carted to the operating wing at 6:30am and surgery started at 7:30. We just received an update at 2pm from the doctors that everything is going well, but that there is still a way to go.
I am staying positive that everything is going to be just fine. I am sitting in the surgical waiting room with a bunch of friends and family. Such wonderful support from everyone!
I will keep you all posted.
Thank you again...
Sam~
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I have just finished reading all your posts and it is amazing that your man is in surgery right now!!! You sound good in your last post. It won't be long before you see him in ICU and are able to talk with him!!!!
These surgeries can last a long time as you know. He will soon wake up and it will feel like it's only been a few minutes...
Take good care and God bless.
Patti
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I've been thinking of you all day. It'll be done soon!
Katie
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Sam
Sending good, healing vibes your way for you all! Hang in there...... we're here, cheering you and Adrian on.... hang tough.... you're doing great!
Phyl
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((((HUGS)))) hugs hugs and MORE hugs!!!!
I am thinking of you both and hope for a VERY positive outcome! :)
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Dear Sam, What a trooper you are to keep us all updated, but hopefully it helps to distract form the neverending hours. Thank God for the internet especially at a time like this. I wish you and all your families a bit of peace tonight. Adrian has his guardian angels and both of you have us. You two have been in my thoughts all day. Bless you both and your families, Holly
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Been thinking about you guys all week. Glad things are going well. Our prayers are also with you.
:)
I know you will be fine.
Peace,
Robyn
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Thank you all..... please keep thouse positive thoughts and prayers coming! Holly you are so right... coming here has always helped keep me at ease... and that is why I came on and updated and why I am again now as well.
Adrian is still in surgery. Going on over 10 hours right now.... that makes me a little nervous BUT they keep saying "Everything is going well." So I am still staying strong in the fact that he is well and should hopefully be coiming out of there soon.
I am also just a little nervous as to how I am going to react when I finally get to see him.... I already miss him sooooooooo much! I just can't wait till I can put my arms around him again!
The anticipation is getting harder by the minute. But hopefully it won't be long now.
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Hi Sam,
Waiting during a loved one's surgery is not easy I know. I have sent a prayer your way for Adrian and for you and the rest of your family.......
Big hugs, and love,
windsong
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You and Adrian have been in my prayers all day. I know it's unbearable waiting for a loved one in surgery.
Thank you for keeping us updated. Give Adrian a big hug and a kiss from all of us
Hugs,
Cheryl
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Sam and Adrian you've been in my prayers all day. I know how stressful this is for you Sam hang in there you know we're sending you some big cyber hugs to help get you through. Adrian has the easy job today (he gets to sleep through the stress).
We're all rooting for you two!
M
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Sam -
You and Adrian have been in my thoughts and prayers all day, so it was great reading your earlier posts. I hope Adrian continued to do well for the remainder of his surgery.
Recovery will take time and patience; Adrian is very lucky to have you by his side.
My best to both of you,
Jan
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Still waiting with bated breath to hear that all went well! :)
sending more ((((HUGS)))) you way!
Denise
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Sam,
What can I say but that I too have been praying for you and Adrian all day.... we are here for you,
Many many hugs,
Margaret
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Sam...hope Adrian is resting well in NICU today....still thinking of you guys and watching for an update. Let us know if there's anything we can do! Anesthesia is the pits, and 10 + hours of it, oy!!!!! Please give Adrian lots of hugs and neck rubs from us, he's going to need them!!!
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hi sam,i am wanting an adrian update.this can be a very difficult time
for you but remember,we are here for you also ,if you need to talk.
my surgery was 17 1/2 hrs and 3 days in a coma in icu,so try and be patient and calm your nerves.
everything seems to be on adrians side.
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Hello Sam and Adrian,
You have been inundated with emails. I wrote so many times to you, privately. Thank you for the responses. We all understand that your time is with family, friends and Adrian right now.
One of my 21 major surgeries, was over sixteen hours long. I was alone and with nobody there for me at the hospital. I can relate somewhat, to what you are going through.
You will be online again with all of us, when the time is right!
Sincerely,
Palace
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Hi everyone,
I know so many of you have kept up with Sam and Adrian. And you all are probably checking in alot to see if there is an update.... We just get to wait. I guess I'm posting because I am thinking of all of you that are worrying about them. It is never fun waiting, but soon we will be relieved when we get the news that everything is fine.
Have a nice night
Patti
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Yep, I was checking in....hoping there would be some news from them by now. Hope he is doing okay. What a cutie patootie couple they are.
Sue in Vancouver USA
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This is like being in the waiting room during a long surgery for a loved one. I am sure that Sam and Adrian know that - in spirit - all of us have more than filled that waiting room ... and we will be there as long as necessary. I'm just going to keep praying for them.
Margaret
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*twiddling thumbs*
*pace, pace, pace*
*sigh*
We're going to be out of town tomorrow so won't check back in until later.
Hang in there, everyone.
Sue in Vancouver
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You know the way I figure it I can drive there in 3 hours. Ok, so really my mommy can drive me there in 3 hours :D
Sam and Adrain you know we are sending you warm fuzzy's and loving prayers your way.
Big hugs,
M
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I, too, have logged in hoping to read some news of Adrian.
Hope we hear from Sam soon. Let's keep up the prayers and good thoughts.
Jan
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does anybody live in the area where Adrian is at ?
if someone was to call the hospital to check on his status,would they tell us ?
then again,i dont even know his last name,i would like an update.
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Hi Everybody, I too am a very nervous mother hen. The more time that passes the more concerned I become. I agree with Satman, is anybody living in that area that could drive over and find out what is happening? These two are like family to us at this point. I too have logged on day and night and now I awake on Saturday to no news again, oy vey. God be with them. I think I will go to Mass tonight and say a few prayers for them. This is so unlike Sam not to post. I just hope that she is very tired and is getting some long awaited rest and that's why we haven't had an update. Holly
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A letter from Dr. Bartels that they posted on the 24th includes Adrian's last name - it's xxxxx if anybody in the area thinks the hospital might give out some general info. Anything at all.
aa
Please accept apologies for omitting his last name....as person's private info should not be posted due to security on the internet... I hope you all understand..... unless they give authorization... please keep this in mind... thanks. Phyl
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I, too, have been checking several times a day hoping to see a new message from Sam. I'm getting anxious, but I'm sure her time is being spent with Adrian. His surgery was long and it was only a few days ago. I'm sure he's either still in ICU or just getting out of it.
I don't think the hospital will release information to anyone due to the HIPPA rules. Most times now, they won't even tell family members medical information.
Wasn't there a member who lived in the area who had talked about visiting Adrian in the hospital? Perhaps that's a good course of action. Otherwise, we'll just have to be patient.
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been looking for the updates as well........ sending wishes for a very speedy recovery.....
Phyl
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You might be able to get some update if you call Tampa General Hospital and ask for the ICU Family Lounge or Waiting area. Probably could ask if they have a separate Neuro ICU otherwise just their Surgical ICU, the Patient Information desk would probably tell you which one. Otherwise, just have them connect you with the appropriate family waiting area and people in there often answer the phone, or a person at that desk, and ask to speak to a family member for Adrian Lenti. You could also ask if there is a Samantha you could speak to, etc. Hopefully get an update that way. Most ICU's have such horribly restricted visiting hours that most of the time you should be able to reach at least one friend or family member (or Sam) in that waiting area. Try that and let us know. I could try it, but I have not communicated with them as closely as some of the rest of you have. I know we are all dying here to get an update, and rightly so, it's like family by now.
Terri
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I just posted all of you to tell you that I had just talked to Sam... I guess it got lost...\
Anyway! He's Fine!!! He was in surgery for 15 hours. He has some facial paralysis. Sam said he looks like Sylvester Stallone when he talks.. The doctors think it will get much better. They left a little bit of the tumor in, so he will need radio therapy in a year.
Sam sounded great on the phone... She was up 40 hours straight. She thinks she can get on the computer tomorrow. She does not have any access while they are in the ICU. I did tell her that we were concerned and that so many will be happy with the news.....
I told her to give a great big hug to her man from all of us!!!!
Okay, now we can all breathe!!!
Patti
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To Everyone On This List:
We are a "Graticule!" We are the "pantograph" in this case for, Adrian.
Thank you so much.......
Palace
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Oh My God...what great news. My hat's off to Patti for having the resources to get the answers to us. Thank you. Now I can breathe. I am so relieved, this is wonderful. Now, let's celebrate and Thank God. Holly
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Thank you Patti.....boy if I ever need serious help getting some info. I am going to have you help me.
Great job getting the latest information for the rest of Sam and Adrian's AN family.
Margaret
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Patti -
thanks so much for the update. A lot of us will sleep a little better tonight.
Jan
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Sam and Adrian,
Was I ever on pins and needles. My computer decides to crash or sonething on Sept. 5th. Thought I did something to it. I only go on the computer for ANA. Well our server tells me its not my fault and its happening to others so will just have to wait it out. I could only keep praying for you guys.
So glad when I finally got on to hear the surgery is over. How awful to have to wait 15 hours Sam. You guys are so remarkable. The strength you have showed gives us all renewed strength. Adrian has the best team to help him through this. That's you Sam.
Still can't get to my private e-mail. Will still be at Tampa General on the 11th. Mixed feelings about that. First and upmost hope you guys aren't there, but home recovering nicely. Secondly if you are there can't wait to see you both!
mema
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Good to hear the news on Adrian. Thanks for the update. *whew*
Sue in Vancouver USA