This just in, from my caseworker:
"The surgery with Dr. Mehta was approved. (FACE SURGERY) They emailed me the auth number yesterday. Go ahead and forget you ever had the visit with Dr. Westeren (IDIOT EYE DR) There is another doctor we would like to send you to...."
This is the most incredible news!
My face surgery was approved!!!!!!!!!!!
I'm so thrilled!
Monday, April 28, 2008
Thursday, April 24, 2008
My eye doctor appt. yesterday was with Alan Westeren at 9am. His suite was on the 2nd floor in a big office building. So I get there just before 9am, and his office is completely locked up. I’m hanging out in the hallway, waiting, and he finally shows up at 9:30.
There was no secretary, and no nurse; just him,
doing all three jobs.
He finally brings me back to the examination room,
and proceeds to give me a vision test. He would not let me set up my laptop, to communicate, so I produced a pad of paper and a pen. He would not write to me. He kept his cell phone in his pocket, and every time it rang, which was pretty dam often, he would answer it and the rush out of the room! (to go play secretary I think)
He was using a digital camera to take pictures of my eye. I did not understand this at all, he was examining my vision, with the eye machine thing, a slit lamp, and some other tools. My vision was not the reason for the appt! He
even had me read the eye chart, or attempt to, with my right eye (my blind eye) hello! I had just told him that eye is completely blind!
He gave me 2 forms, and told me I need to send them to my previous eye doctors to get my records, before he can make any recommondation. Wtf? Why do I need to do that? I asked him if I could just sign them and his offeice could send them......his reply was "no, I don’t have the addresses." He told me that this was "standard procedure". How can this be standard procedure,
when I have NEVER been asked to do that before?
He kept leaning into my ear, yelling to communicate with me. I kept telling him, I need to SEE your lips and please don’t yell. It does not help at all. Meanwhile, he is still running out of the room every time his phone rang, leaving me in the examination room for endless amounts of time!
I felt like crying. He came back, I handed him the paper and pen and told him
"Please write to me, I have never had a problem communicating with a doctor, but this is not working. The Americans with Disabilities Act, states that you must communicate with me, and you are not."
It was only AFTER I said that, that he started writing to me. He would jot some stuff down,
then hand me the pad or paper and rush out of the room, giving me no chance to read it and ask questions!
Then he dialated my eyes with those drops. WHY? What does that have to do with my eyelid closeing?? Now I’m back in the waiting room, while the dialation happens, and he is running around, playing secretary, and nurse, and doctor to other patients that were there.
Now its like 1:00 pm, he brings me back to the examination room, and examines my eyes some more. And again, he tries to get me to read the eye chart, with my blind eye!
He never told me what he recommended. He never told me anything! I asked him numerous times about the gold weight, he finally wrote down, ‘after you send away for your records, I will decide IF you need the gold weight, then IF I recommnd it, it will take about 6 weeks to get approval.’ (He circled the word IF several times) So I asked, "what do you mean
by ‘IF’? It’s a no brainer, my eyelid does not close all the way....." His reply to that was just pointing to what he had just wrote.
I told him "you need a secretary, a nurse, and most of all you need to work on your bedside manner." He chuckeled at that but I was dead serious!
This was the most unbelievably unprofessional doctors visit I have ever had.
My impression of him: incompetant, unprofessional, and unorganized.
I finally got out of there at 2:30. Oh, and the absolute clincher? We are standing at the reception area,
I handed him John’s card (my transpo) and I said "Will you please phone my ride home?"
He gestured to the phone on the desk and said "Help yourself."
There was no secretary, and no nurse; just him,
doing all three jobs.
He finally brings me back to the examination room,
and proceeds to give me a vision test. He would not let me set up my laptop, to communicate, so I produced a pad of paper and a pen. He would not write to me. He kept his cell phone in his pocket, and every time it rang, which was pretty dam often, he would answer it and the rush out of the room! (to go play secretary I think)
He was using a digital camera to take pictures of my eye. I did not understand this at all, he was examining my vision, with the eye machine thing, a slit lamp, and some other tools. My vision was not the reason for the appt! He
even had me read the eye chart, or attempt to, with my right eye (my blind eye) hello! I had just told him that eye is completely blind!
He gave me 2 forms, and told me I need to send them to my previous eye doctors to get my records, before he can make any recommondation. Wtf? Why do I need to do that? I asked him if I could just sign them and his offeice could send them......his reply was "no, I don’t have the addresses." He told me that this was "standard procedure". How can this be standard procedure,
when I have NEVER been asked to do that before?
He kept leaning into my ear, yelling to communicate with me. I kept telling him, I need to SEE your lips and please don’t yell. It does not help at all. Meanwhile, he is still running out of the room every time his phone rang, leaving me in the examination room for endless amounts of time!
I felt like crying. He came back, I handed him the paper and pen and told him
"Please write to me, I have never had a problem communicating with a doctor, but this is not working. The Americans with Disabilities Act, states that you must communicate with me, and you are not."
It was only AFTER I said that, that he started writing to me. He would jot some stuff down,
then hand me the pad or paper and rush out of the room, giving me no chance to read it and ask questions!
Then he dialated my eyes with those drops. WHY? What does that have to do with my eyelid closeing?? Now I’m back in the waiting room, while the dialation happens, and he is running around, playing secretary, and nurse, and doctor to other patients that were there.
Now its like 1:00 pm, he brings me back to the examination room, and examines my eyes some more. And again, he tries to get me to read the eye chart, with my blind eye!
He never told me what he recommended. He never told me anything! I asked him numerous times about the gold weight, he finally wrote down, ‘after you send away for your records, I will decide IF you need the gold weight, then IF I recommnd it, it will take about 6 weeks to get approval.’ (He circled the word IF several times) So I asked, "what do you mean
by ‘IF’? It’s a no brainer, my eyelid does not close all the way....." His reply to that was just pointing to what he had just wrote.
I told him "you need a secretary, a nurse, and most of all you need to work on your bedside manner." He chuckeled at that but I was dead serious!
This was the most unbelievably unprofessional doctors visit I have ever had.
My impression of him: incompetant, unprofessional, and unorganized.
I finally got out of there at 2:30. Oh, and the absolute clincher? We are standing at the reception area,
I handed him John’s card (my transpo) and I said "Will you please phone my ride home?"
He gestured to the phone on the desk and said "Help yourself."
Wednesday, April 23, 2008
Everything is a fight...
well..........last time I updated this blog, I was really excited.
I had just seen Dr. Mehta, regarding reanimation of my face -
t-flap surgery. Guess what? My insurance company (Molina) denied it.
Yes I am appealing it. 'They' are sending the case to a 3rd party,
to determine that the surgery is "medically nessasary".
How exactly does that work? I mean I will not die without the surgery.
My life won't be threatened by not having the surgery, however it is a chance to improve my quality of life. Why does everything have to be a fight?? ***
Today I go see ANOTHER eye doc regarding the gold weight surgery.
I was all set to have this surgery and on the day of it, my insurance company balked. So I appealled it, and todays appt is where that appeal has led me. This is totally crazy. The eyelid surgery IS urgent.
Last friday I had a Pet scan to see the status of my lymphoma cancer.
What cancer?? ;-) I feel fine. I feel great actually. I have been riding my bike (trike) almost every day. I take Heyzeus with me to the park, thats 3 miles each way....wooooo. (not a dog park - but better than no park at all)
***When I had my left side AN/VS removed (2004) I literally begged for a nerve graft because I feared coming out of surgery with bilateral facial paralysis. (I already had unilateral - right side) I was told "oh, you won't need it." opps.....I did end up needing it! I really wish....I just kick myself for not pushing the issue, and insisting on it. Now I'm in this fight with Molina, to get the t-flap surgery approved. My point? Be relentless in going after what you want.
I had just seen Dr. Mehta, regarding reanimation of my face -
t-flap surgery. Guess what? My insurance company (Molina) denied it.
Yes I am appealing it. 'They' are sending the case to a 3rd party,
to determine that the surgery is "medically nessasary".
How exactly does that work? I mean I will not die without the surgery.
My life won't be threatened by not having the surgery, however it is a chance to improve my quality of life. Why does everything have to be a fight?? ***
Today I go see ANOTHER eye doc regarding the gold weight surgery.
I was all set to have this surgery and on the day of it, my insurance company balked. So I appealled it, and todays appt is where that appeal has led me. This is totally crazy. The eyelid surgery IS urgent.
Last friday I had a Pet scan to see the status of my lymphoma cancer.
What cancer?? ;-) I feel fine. I feel great actually. I have been riding my bike (trike) almost every day. I take Heyzeus with me to the park, thats 3 miles each way....wooooo. (not a dog park - but better than no park at all)
***When I had my left side AN/VS removed (2004) I literally begged for a nerve graft because I feared coming out of surgery with bilateral facial paralysis. (I already had unilateral - right side) I was told "oh, you won't need it." opps.....I did end up needing it! I really wish....I just kick myself for not pushing the issue, and insisting on it. Now I'm in this fight with Molina, to get the t-flap surgery approved. My point? Be relentless in going after what you want.
Monday, March 24, 2008
March in a nutshell....
Last time I updated my blog and posted it on the nf2crew, I asked “are you guys sick of me doing this?” I received many many replies, both on and off the list, all positive. Thank you all for that.
It is overwhelming, yet great, to feel all the support.
March 13th, was my last bout of chemo. For this round anyway. Next month (apr) I will have yet another PET scan and Dr. Zu says “we will take it from there”
The day of the eyelid surgery, (3/19) they cancelled it. Grooooan! My insurance company says they are looking for a different doctor to perform it. So according to them, the surgery was not denied, it was ‘only’ cancelled and is still pending. Wtf is the difference?! From my understanding, they are not denying the service, just denying that doctor perform the service. Whatever, I am appealing the decision. Meanwhile, I have needed this eyelid thing for months now.
Last but not least, I saw a doctor who specializes in facial reanimation. I saw him on 3/21/08.
The doctor is Dr. Ritvik P. Mehta, M.D. Otolaryngology, Head & Neck surgery.
My appt with Dr. Mehta went fantastic! What a nice man he was, he was very thorough and just went out of his way to communicate with me, and answer ALL of my q's.
We discussed my different options (I have 3) and I decided I want what is called a Temporalis Muscle Transfer (T-FLAP). So he is going to start the process (?) for me to get that done. He said to call him in 1 week to set a date for surgery.
It is overwhelming, yet great, to feel all the support.
March 13th, was my last bout of chemo. For this round anyway. Next month (apr) I will have yet another PET scan and Dr. Zu says “we will take it from there”
The day of the eyelid surgery, (3/19) they cancelled it. Grooooan! My insurance company says they are looking for a different doctor to perform it. So according to them, the surgery was not denied, it was ‘only’ cancelled and is still pending. Wtf is the difference?! From my understanding, they are not denying the service, just denying that doctor perform the service. Whatever, I am appealing the decision. Meanwhile, I have needed this eyelid thing for months now.
Last but not least, I saw a doctor who specializes in facial reanimation. I saw him on 3/21/08.
The doctor is Dr. Ritvik P. Mehta, M.D. Otolaryngology, Head & Neck surgery.
My appt with Dr. Mehta went fantastic! What a nice man he was, he was very thorough and just went out of his way to communicate with me, and answer ALL of my q's.
We discussed my different options (I have 3) and I decided I want what is called a Temporalis Muscle Transfer (T-FLAP). So he is going to start the process (?) for me to get that done. He said to call him in 1 week to set a date for surgery.
Friday, February 29, 2008
2 down, 2 to go
Well, what a way to start the day yesterday!
I was headed out front to wait for my ride (to chemo)
There are 2 houses on this lot, we are in the rear house.
So to get to the street you have to exit our gate, then walk up the nieghbors driveway. I got to the end of the driveway, to the sidewalk and bam! Down I went. I hate that driveway! It is unpaved and unlevel and just tretcherous as hell. Not to mention all the crap and mud from the recent rains. ugh!
Plus I can't 'wall walk' using the fence as support because they have all these potted plants along the fence.
Shit happens, I'm fine but I ripped the knee of my favorite jeans!
The day before this, I was out mowing our backyard....so whats my point?
I don't know....I guess you just never know what the day will bring!
The chemo itself was uneventful.
As any NF2'er can tell you, 'uneventful' is a good thing. ;-)
March is going to be a busy month.
My next chemo treatment is next thursday, 3/6/08.
Then the following day I will have a brain MRI,
discuss the results with Dr Slattery,
and then see Steve Otto for my ABI tune up.
This will all be up at HEI in Los Angeles.
We will have to hit the road early, and it will be a long, full day.
My last appt that day (with Otto) is at 3:30, so we should be back on the road heading home just in time for L.A. rush hour. Groaaan.
Then 3/13/08 more chemo and a consult with Dr. Zu.
Then on 3/19/08 I'm going for outpatient eye surgery.
They are going to put a gold weight in my left eyelid, as it doesn't close all the way.
I already have one in my right eyelid (2004) I have been happy with it, and its just time to do the other eye.
Busy month!
I was headed out front to wait for my ride (to chemo)
There are 2 houses on this lot, we are in the rear house.
So to get to the street you have to exit our gate, then walk up the nieghbors driveway. I got to the end of the driveway, to the sidewalk and bam! Down I went. I hate that driveway! It is unpaved and unlevel and just tretcherous as hell. Not to mention all the crap and mud from the recent rains. ugh!
Plus I can't 'wall walk' using the fence as support because they have all these potted plants along the fence.
Shit happens, I'm fine but I ripped the knee of my favorite jeans!
The day before this, I was out mowing our backyard....so whats my point?
I don't know....I guess you just never know what the day will bring!
The chemo itself was uneventful.
As any NF2'er can tell you, 'uneventful' is a good thing. ;-)
March is going to be a busy month.
My next chemo treatment is next thursday, 3/6/08.
Then the following day I will have a brain MRI,
discuss the results with Dr Slattery,
and then see Steve Otto for my ABI tune up.
This will all be up at HEI in Los Angeles.
We will have to hit the road early, and it will be a long, full day.
My last appt that day (with Otto) is at 3:30, so we should be back on the road heading home just in time for L.A. rush hour. Groaaan.
Then 3/13/08 more chemo and a consult with Dr. Zu.
Then on 3/19/08 I'm going for outpatient eye surgery.
They are going to put a gold weight in my left eyelid, as it doesn't close all the way.
I already have one in my right eyelid (2004) I have been happy with it, and its just time to do the other eye.
Busy month!
Saturday, February 23, 2008
3 to go....
I slept like a rock after chemo last thursday.
And I slept most of the next day as well.
The chemo left me tired and drained.
But, no night sweats, no heartburn and best of all...
No evil steriods this time! yay!
My next chemo is 2/28/08,
next thursday.
Just pondering....Cancer vs NF2,
which one is worse? which better? They both suck!
Both can be devastating diseases.
However, the 'face' of Cancer is much more well known.
With Cancer I have found state of the art treatment centers, knowledgable nurses and doctors, caring staff, planned out management of my cancer,
and many different support systems.
With NF2, not so much.
And I slept most of the next day as well.
The chemo left me tired and drained.
But, no night sweats, no heartburn and best of all...
No evil steriods this time! yay!
My next chemo is 2/28/08,
next thursday.
Just pondering....Cancer vs NF2,
which one is worse? which better? They both suck!
Both can be devastating diseases.
However, the 'face' of Cancer is much more well known.
With Cancer I have found state of the art treatment centers, knowledgable nurses and doctors, caring staff, planned out management of my cancer,
and many different support systems.
With NF2, not so much.
Saturday, February 16, 2008
4 to go....
I have 4 chemo treatments coming up.
The 1st one is thursday, 02/21/08, and then the next 3 thursdays after that.
In the past week I've had night sweats ALOT, boooo, not good.
(its the #1 symtom of lymphoma)
Therefore, I'm kinda looking forward to the chemo treatments,
as it seems they are right on time to keep the lymphoma at bay.
I am not looking forward to the steroids that I assume* I will have to take after chemo. I keep forgetting to ask Dr. Zu about that, I will email him now!
* assume nothing, question everything!
The 1st one is thursday, 02/21/08, and then the next 3 thursdays after that.
In the past week I've had night sweats ALOT, boooo, not good.
(its the #1 symtom of lymphoma)
Therefore, I'm kinda looking forward to the chemo treatments,
as it seems they are right on time to keep the lymphoma at bay.
I am not looking forward to the steroids that I assume* I will have to take after chemo. I keep forgetting to ask Dr. Zu about that, I will email him now!
* assume nothing, question everything!
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