Author Topic: My experience with world-renowned radiation specialist  (Read 9380 times)

mcrue

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My experience with world-renowned radiation specialist
« on: January 30, 2016, 01:25:50 am »

On January 12th I contacted a world-renowned Gamma Knife specialist and scheduled my Gamma Knife radiosurgery for February 2nd, with my pre-surgery appointment occurring the day prior on February 1st.

I also booked my hotel/lodging and travel plans.

I was told by a member of the surgeons office that "she had worked there for more than 15-years and could tell me immediately that my insurance would be accepted, and also that I would be "in network."

Awesome right?

On January 25th I received an email confirmation from the Gamma Knife surgeons office indicating  that "everything was good to go with my insurance."

Fantastic! Everything is in place. What could possibly go wrong?

Well, as many of you know,  the days just prior to surgery can be nerve wrecking for most of us.

Incredibly, just 4 days before my scheduled surgery I received a phone call from a "customer service representative" from the Gamma Knife surgeons hospital indicating that "my case was reviewed by board members and that they will not treat me unless I pre-pay $21,000 cash immediately before the surgery!"

Are you serious!

Obviously, my family and I have been in emotional turmoil over this, as it should have never happened in the first place, especially from a first-rate office. I immediately contacted my insurance company directly, and spent close to 3 hours on the phone with them. They indicated that I indeed was approved for the Gamma Knife treatment out of state.

To make a long story short, this hospital still refuses to treat me unless I pre-pay $21,000 cash for there special deal due before my surgery. The hospital is claiming just 4 days before my scheduled surgery that they "don't have a contract with my out-of-state insurance company," and that I would need to fork-over $21,000 cash (pre-paid)  or my upcoming surgery would be canceled.

I have the best PPO insurance available in my state, from a national top-of-the-line insurance company.

The worst part was the hospital  "customer service rep" was completely "robotic" and unapologetic (almost collections agency like). Furthermore, the world-renowned surgeons office told me they would contact me immediately in the morning to discuss this ordeal, but surprise-surprise they never even bothered to contact me again. Very disappointing from such a first-rate establishment.
 
I don't care if you're the best surgeon in the world, if your staff and hospital treat brain tumor patients this way it's completely unacceptable. With no apology offered.

For God sakes, I have a brain tumor and they're treating me like this less than 4 days before my scheduled surgery.

I still can't believe such a highly respected doctors office would do this. These people emailed me an "insurance  confirmation" letter only to have their hospital staff cancel my appointment just 4 days prior to my surgery and tell me to "disregard" with no apology whatsoever
 

At the end of the day, I had to cancel all my travel plans and my hotel/lodging reservations,  and I also had to cancel the surgery. Now I'm back to "square one" while my tumor is still growing. All this time has been wasted while I could have booked another facility.

Am I wrong to feel this upset after having been approved? Who do you think should be responsible for all the canceled airline fees and hotel fees, not-to-mention all the emotional distress this has undoubtedly caused me and my family?

What a waste of time and emotions.

How would you feel if this happened to you? Not even an apology. They could straight-up care less for what they put me and my family through with their "robotic" approach. It was surreal.

Anyways, now it's time to look for another treatment center. Apparently the lesson learned is, even if you have a "pre-approval" letter for the surgeons very own office claiming your insurance is "good to go", the hospital can still override the decision just days before your scheduled surgery and tell you to "disregard that approval letter" because their hospital doesn't have a contract with your insurance company and their doctor is "out-of-network."

The truth is I can still see "out-of-network" doctors with my PPO insurance; however, this hospital still  refuses to treat me stating they don't have a contract with my insurance.

Then why did they send me an approval letter in the first place?? Frustration to the max!!

Most hospitals want to work with your insurance company and "win the business." Some hospitals  even have insurance advocates who will do everything possible to make things work; however,  obviously these people went out of there way to (unapologetically) deny me.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Patti

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Re: My experience with world-renowned radiation specialist
« Reply #1 on: January 30, 2016, 07:05:41 am »
what a crazy disappointment!  we all know better than anyone how emotionally "prepared" we get before a surgery.  i can only imagine the stress you must feel!  so sorry!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

CattAN

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Re: My experience with world-renowned radiation specialist
« Reply #2 on: January 30, 2016, 07:43:52 am »
Dear Mcrue,

My apologies for what you have to endure dealing with this facility.  If you still can change course, I highly recommend the CyberKnife Team at Stanford.  They have a great patient Coordinator who handled all my insurance logistics.  There is minimum stress involved, and you get to stay at their affordable Guesthouse.  One more thing to mention, I had one treatment with CyberKnife similar to a Gamma Knife.  The only difference is there is no discomfort with the head frame; the Stanford Team use a plastic frame.  Good luck to you with your treatment, you will feel better once it is over with. 

CattAN
« Last Edit: January 30, 2016, 07:47:18 am by CattAN »
Right side AN diagnosed 6/7/2015
12x11 mm
Swelling to 15x13 mm @ six months
SSD, tinnitus, some balance issues....
~~~~~~~~~
Stanford CyberKnife1 9/2/2015 (single fraction)
Dr. Steven Chang & Dr. Iris Gibbs

rupert

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Re: My experience with world-renowned radiation specialist
« Reply #3 on: January 30, 2016, 08:42:33 am »
That's crazy.  >:(    Usually you have to fight with the insurance company because they are the ones denying.  I have seen this though with some people on here dealing with surgery.  I would say this.  It really depends how bad you want to have the procedure done there.  In other words,  I wouldn't give up first class treatment because of insurance issues.   Those are two separate things not in any way related.   With what you have presented, I believe you could work it out with all parties involved over time.  That will be your decision. If you feel that facility is the best treatment for you take a step back and see if it can be worked out.  It really sounds like a strange incident to say the least.  If you're never going to be happy there because of it, I know you've done enough research to move on to a different facility.  Lots of good ones out there. Just take a step back, you will be fine.   Good luck

mcrue

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Re: My experience with world-renowned radiation specialist
« Reply #4 on: January 30, 2016, 08:54:18 am »

Stanford was my first choice (my insurance was accepted at Stanford with no issues); however, they said I wasn't a good candidate anymore because of my aggressive tumor (5mm growth in 5 months) and the fact that I had been previously suicidal due to my "catastrophic" tinnitus diagnosis. This was the official reason as I was given. Trust me I tried.

Although I am no longer suicidal, and I no longer have catastrophic tinnitus thanks to my WIDEX Zen hearing aid masker, apparently Stanford still feared that radiation treatment might elevate my tinnitus to a level that may possibly make my suicidal again and/or make my life miserable if God-forbid my hearing nerve wear to no longer function and I could no longer use my hearing aid masker to block out the tinnitus.

Obviously, I can just go down the street to any doctor in the country and have the procedure done, so I got second and third opinions for both surgeons at the House Clinic in Los Angeles and various world renowned places throughout the country regarding this. I was told I could no longer "Watch & Wait" and treatment should commence as soon as possible.

Yes, it is likely my tinnitus will increase either way through surgery or radiation.

So in January I went to get a second opinion, and they said I was an excellent candidate.  You read the unfortunate nasty circumstances that transpired at that facility in my opening thread.

Now I'm back to square one. My family is freaking out that my tumor is still growing and we wasted all this time - a full month. 

Frankly, I'm still very upset regarding everything that happened (less than 24-hours ago). I was supposed to leave tomorrow (Sunday) night to my first appointment which is now  canceled.

Life must move on, so now I'm considering UVA, Wake Forest or Kondziolka.

I think these are the top 5 in the country for radiation. Any other suggestions would be most welcome. 
« Last Edit: January 30, 2016, 09:18:13 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: My experience with world-renowned radiation specialist
« Reply #5 on: January 30, 2016, 09:07:36 am »
That's crazy.  >:(    Usually you have to fight with the insurance company because they are the ones denying.  I have seen this though with some people on here dealing with surgery.  I would say this.  It really depends how bad you want to have the procedure done there.  In other words,  I wouldn't give up first class treatment because of insurance issues.   Those are two separate things not in any way related.   With what you have presented, I believe you could work it out with all parties involved over time.  That will be your decision. If you feel that facility is the best treatment for you take a step back and see if it can be worked out.  It really sounds like a strange incident to say the least.  If you're never going to be happy there because of it, I know you've done enough research to move on to a different facility.  Lots of good ones out there. Just take a step back, you will be fine.   Good luck


Thank you Rupert. Yes, like you said my insurance is fantastic. It's a  top-of-the-line PPO and was not the problem. The Gamma Knife facility hospital Customer Service representative claims they do not have a contract with my insurance company, and therefor wanted me to pay the hospitals " special good deal" of only $21,000 cash pre-paid before my treatment.

The hospital also claimed their doctor wasn't "in network."

Then the hospital claimed my insurance refused to cover it (even though this is not true as I spoke with my insurance directly and forwarded the insurance approval confirmation letter to the hospital). It just seems like whatever i said or did  the hospital (and their board members that reviewed my case) were completely set against me for some reason.

I doubt the Gamma Knife doctor even knows what happened (like his staff will even tell him the truth)?

At this point I wouldn't go back there even if they did apologize (which they never will). I just wouldn't feel comfortable after the callous way they treated me and my family. As I mentioned earlier, you can be the best "number one" doctor in the world, but if your staff and hospital treats its brain tumor patients (and family members) in this awful manner then you have no integrity in my opinion. 

I should have known something was wrong when I sent my MRI and medical records 6 months ago (back in July 2015) for their free review. The one-page response I received from the doctor was filled with typos and "mis-spellings" as if a child had written (or dictated) it. It was very alarming to receive that from a surgeon. I still have that letter, as it was so shocking a medical doctor was send something out like that, with so many typos literally in every other sentence.
« Last Edit: January 30, 2016, 09:30:02 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Doc

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Re: My experience with world-renowned radiation specialist
« Reply #6 on: January 30, 2016, 11:58:34 am »
...an important, all be it unfortunate lesson in healthcare economics. It’s not about the health and wellbeing of the patient. No. It’s about money. The all mighty dollar. That’s all ‘they' care about, money. If your insurance company were as ‘fantastic’ as you say, you would not have had this sad story to tell. They would have stepped up and made certain you got the care you need. The reality is, your insurance company doesn’t care about you either. Get used to the idea they're in it for the money just like the hospital that demanded payment in advance.

It’s a shame you had to find out the hard way. For your sake, I hope there isn’t a next time you’re left disappointed.
« Last Edit: January 30, 2016, 12:05:18 pm by Doc »
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

mcrue

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Re: My experience with world-renowned radiation specialist
« Reply #7 on: February 01, 2016, 04:36:28 pm »

My insurance is fantastic. Every single hospital and doctor I've contacted throughout the country accepts my insurance as "in network." The places that are not "in network" I can still go to for treatment as "out of network." The only difference is my out-of-pocket maximum for "in network" is $5100 while my out-of-pocket maximum for "out of network" is doubled to $10,200.

I switched insurance during open enrollment because I knew I would likely be having brain surgery in 2016. I switched from an HMO insurance to the best  PPO available in my state to avoid this mess. 

For some reason, that hospital which denied me treatment apparently changed their contract with my insurance company just this year (2016). If they would have simply said from the very beginning: "we can't treat you since we have no contract with your insurance company" all of this mess would have been avoided.

In my opinion, doctors offices should never tell patients "you're approved" and send patient written confirmation only to cancel 3 days before you're scheduled brain surgery. That's just horrible, and should never have happened. It's sloppy and negligent.

It wasn't difficult finding another treatment center.
« Last Edit: February 01, 2016, 04:43:25 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: My experience with world-renowned radiation specialist
« Reply #8 on: February 09, 2016, 12:12:15 pm »
Email Jason Sheehan at UVA to start off with. They have a big team and what I ended up doing was just to give them my insurance info and they have an administrator do all the background work. I also told them I wanted absolutely no surprises, and they were understanding. Charlottesville is not that big, so you are less likely to get some slug of an employee who could care less.

DizzyMamaIL

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Re: My experience with world-renowned radiation specialist
« Reply #9 on: March 03, 2016, 04:02:43 pm »
How do you know if the doctors that make up your care team are world-renowned? Everyone I've seen so far has significant experience with AN and the hospital they're affiliated with is definitely one I've heard referred to as prestigious. But, how do you know?
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

areles

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Re: My experience with world-renowned radiation specialist
« Reply #10 on: March 03, 2016, 08:27:07 pm »
i'm so sorry about your experience. 

i'm a little lost; we spoke privately, and in fact, your public post about dr. schwartz as well as the resulting commentary both in thread and between us in private messages is one of the reasons i consulted with them first, so i guess i didn't realize you'd be going elsewhere.  though for GK i suppose i should have realized.

regardless of all that, and to the point of your post:

all i can say about this is that i firmly believe, despite the cliche, that things happen for a reason.  and as infuriating and scary as this is, i have to believe this hiccup will lead you to your own best result, and my thoughts will be with you.
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

mcrue

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Re: My experience with world-renowned radiation specialist
« Reply #11 on: March 07, 2016, 01:38:23 am »
Dr. Schwartz is my first choice if I were to undergo microsurgery, or God forbid, salvage surgery if the radiation fails. After consulting with Dr .Schwartz several times, we agreed that radiation was a good selection for me (even though other prominent radiation specialist disagreed).

Trust me when I tell you this makes it a very hard decision.

Anyways, thank you for the kind words. My family and I were thinking and praying for your son on the day of his surgery. I also like to believe that things happen for a reason. Only time will tell.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: My experience with world-renowned radiation specialist
« Reply #12 on: March 07, 2016, 01:40:59 am »
Email Jason Sheehan at UVA to start off with. They have a big team and what I ended up doing was just to give them my insurance info and they have an administrator do all the background work. I also told them I wanted absolutely no surprises, and they were understanding. Charlottesville is not that big, so you are less likely to get some slug of an employee who could care less.

Thank you for steering me in the right direction.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: My experience with world-renowned radiation specialist
« Reply #13 on: March 07, 2016, 06:57:47 pm »
Hi McCrue, great team. I hope everything worked out. You are just a little behind me, I had mine done early January. I should start feeling some symptoms from swelling, if it occurs, in a month or two, and then through the next year and a half, if it happens at all. So far so good. Head did you like that head frame? Just getting complete feeling back after a couple months, but a minor inconvenience.

stevehernes

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Re: My experience with world-renowned radiation specialist
« Reply #14 on: September 16, 2024, 01:05:05 am »
Sorry about everything you’re going through. How are you doing these days? I know that making travel plans in such a condition can feel like a real mission. It’s tough to navigate through all the uncertainties, but I believe it’s important to have something to look forward to. Airmiles.ca could definitely be helpful in this situation, offering some great options for travel deals that could lighten the load. They often have promotions that make it easier to plan trips without breaking the bank
« Last Edit: September 18, 2024, 05:53:15 am by stevehernes »