ANA Discussion Forum
AN Community => AN Community => Topic started by: Soundy on August 13, 2008, 09:14:16 am
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I will start by saying I fell Friday and hit hard on tail bone ... no problem there other than a black and blue
behind ...
but ramming spine up into bottom of my skull produced a headache within seconds that has never really
gone away ... Monday after spending the day in bed eating hydrocodone after Tylenol did nothing , I ended
back at the doctors and rescanned...
swelling around base of skull and upper spine ...it was putting pressure against spine and bottom of brain ...
ended up shot with Demerol and more tablets of Demerol and phenagren (sp) to combat the nausea
and vomiting ...also steroids to help with inflammation ... I slept from about 5 pm Monday til 6:15 am Tuesday
and got up still hurting and after calling the doctor was told to take another femoral and keep them posted..
I got a call this morning ...My regular doctor contacted my surgeon yesterday and let him know what was
going on and was told I would have to learn to live with the head ache pain because it was just
par for the course ... my doctor was not happy with this answer and I am taking in my new BC BS list of
approved doctors to him and between us we are looking for a new doctor to address what is going on...
If I was a doctor and had done skull base surgery on a patient and they injured that area in an accident
I would be more interested than he seems ...
I have always liked him and gotten on well with him... up until post op where he has had the attitude that
I made it through surgery and should be glad to be here (which I am ) and that I need to learn to cope and
accept what my life now is like ... I know my life will never be the same ... and that's OK... I am just mad
at his lack of concern with the situation... he told my regular doctor for me to just keep my December
appointment and he would see me then... if something was damaged in the fall I could be dead or
impaired by then...
So I guess I am in the market for a new doctor... why do I feel guilty about looking for another? It feels like
I am doing something wrong by looking and that I should have more loyalty to him... I am grateful that my out
come is as well as it is ...but not happy with treatment I am now getting ...
I guess I am just venting ... any insight on the subject would be appreciated...
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Soundy:
What a distressing situation! I would do exactly what you've decided to do and find another doctor, one that gives a rap about your well-being. I hope you're successful in that effort...please keep us posted.
I've noticed that most surgeons are very narrow-focused and basically aren't too concerned about you beyond what involves and relates to their area of expertise (neurosurgery, in this case). My neurosurgeon is the exception. He made it clear that simply cutting out my AN was not his only concern and that he wanted me to have a good quality of life, post-op. He said he had done hundreds of AN surgeries in the past 30 years and because of then-limited knowledge in the field, many of those patients ended up with complications, very often permanent facial paralysis. He found that unacceptable and now does the debulking + FSR method (working with a radiation oncologist) on large AN's and refers patients with under-3 cm tumors to the radiation oncologist, as radiation is less invasive and he believes has a better chance of offering the AN patient a better quality of life, post-treatment.
This is a neurosurgeon with compassion for his patients. Your doctor is not. Fire him and don't spend a nanosecond feeling guilty. He did his job and collected his fee. He obviously has little interest in your well-being at this point so find a doctor who does.
Jim
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Soundy~
Of course, I couldn't say it any better than Jim!! Sorry this is happening to you!
K
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Oh I couldn't agree more with Jim! Honey, that man done you wrong, >:( and you need to kick him to the curb and move on. Too bad all doctors aren't more like Jim's.
Power to the Patient!! :)
Sue in Vancouver USA
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Power to the Patient!! :)
Aye-men!!!!!!!! Another time that we note that we truly are our own best patient-advocate!
Soundy... oy..... good for you for taking control of this and telling your doc adios. You do what you feel is best for you and in finding one that is going to actually "listen" to their patients. It's about time they listen to us... heck, we pay for their homes and cars and vacations... they better listen to us!
Hope your um... derrierre feels better soon! I've done the same... a real pain to sit and such. Hang in there!
Phyl
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Soundy -
I'm very fortunate to have wonderful doctors - like Jim.
But if my doctors weren't wonderful - like yours - I'd fire them without ever looking back.
Do NOT feel guilty!!!
Jan
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Thanks for support... I feel better about finding someone new ...
It is a funny feeling I have since I have dealt with him for 4 years and the first 3 and a half years
were great and I had no complaints....the past six months or so he just assumes I am fine and
should move on...
feeling better today and only had to take tylonal for head ache ... less feeling of pressure so I guess
swelling is going down ... go back to see my regular doctor tomorrow and will go from there...
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Soundy -
Your doctor's attitude is outrageous! If he had at least seen you and had to put off treatment for a short time it might be one thing, but in my opinion, he is just plain wrong. I understand you are grateful for his surgical skills since you apparently had a good surgical ourcome, but you should feel absolutely no guilt about firing him! If he feels he did his job and is no longer very interested it really is time for someone new! I hope you find a more caring compassionate doc.
Wendy
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After a year and a half of headaches and phone calls about headaches, I quit dealing with the neurosurgeons in California who operated on me. I'm on the east coast anyway. It never occurred to me that I would need continuous looking after by them once my tumor was gone! They aren't pain managers anyway. I found myself a good headache neurologist and a good pain management specialist. As I found out at the ANA symposium from the docs there, no one can pinpoint the "why" of these headaches most of the time anyway (except in Janets case!) The best we can do is manage our pain case by case. Go ahead and fire the bloke and find a good pain manager. The neurosurgeon's done all he can do for you at this point. Just my opinion.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Have three possibilities ... one doctor associated with an anesthesiologist group that works in post op pain control
and two neurosurgeons that work with chronic pain patients... my doctor is talking to all three and see who
seems best for me and I will talk to the one that he picked after he has talked to him in "doctor speak " and
make final decision ...
two are in Nashville about 1 hour 45 minutes on a good day away and the other in Memphis ...maybe 4 hours
away ...I hate to use distance in choosing but between gas and the insurance changes we have had , where they
are not paying til we pay out $2400 it has to factor in... I am reasonably sure that the scans I have had since falling
have ate up that amount and then some but since we haven't paid it yet I have to pay for visits up front or look
sad and talk the doctors into billing me and paying as I can ...
Opinions on what type doctor I should go with would be appreciated???
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Soundy:
The pain control doctor sounds good but of course, this is strictly your decision and the distance is a reasonable factor to consider.
Although this falls into the insurance category, I found that once I had met my deductible or out-of-pocket in charges (doctor or hospital) whether they had been paid in full by me or not, the insurance company (Blue Cross) considered that the same as if I had already paid the bills and would cover charges from that point on in full (or 90% depending on the charge).
I would ask your insurance rep about this and see if it applies as you are responsible for those 'out-of-pocket' charges, whether you've paid them or not and your insurance company should be picking up any new charges, unless your contract says otherwise. I suggest you try to find out. It could be well worth the effort.
Jim
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My husbands work went to a high deductible plan because it was cheaper... they have left it to us
to negotiate with doctors and hospitals as far as paying off balances but will not begin paying anything
until we pay the first $2400...
our part of of monthly premiums are about $100 less than we had to pay for CIGNA coverage ...we
have diverted that to an HSA checking account that can only be used for medical expenses and the
company advanced everyone $2400 for this year and it is being paid back to the company $200 each month ...
they were going to give everyone with family coverage $2400 and individuals $1200 but realized how much
it was going to be so instead deposited it as an interest free loan... once met it will pay 80% of most charges
and after $4800 is paid out of pocket will pay 100% of most charges...
all medicines have to be paid in full and turned in at the end of the year and if deductibles have been met
they will reimburse us a portion... we do get a discount which brings most drugs down about 40% and
some even more ...
I have it worked out with my regular doctor to let them run things thru and insurance will apply any discounts
and then pay the balance ... but before insurance picks up we have to spend the $2400... it has been totally
confusing and has been a headache ... the man that came down to explain things to everyone pretty much
said they were making it hard so people would not go to the doctor as often...
which in ways is good because one man at work with an Aaflac supplement that pays to him not the doctor or
hospital would take his child to the ER for dumb things ... she had a splinter under her finger nail and he was
talking about taking her to the doctor but said he would wait til after the office was closed and go to ER
because Aflac would pay him a $125 ER amount...the ER bill was paid in full as an accident ...
(the policy paid 80% of illness) it was a little over $600 ... an office visit would have been $79 I know
since we use the same doctor ... he would have had a $20 co-pay and Aflac would have paid him a $50
office visit payout...thsi was under CIGNA which paid better ... so CIGNA was out almost $600 and he
made $125 ... where if he had taken the child to the office he would have only pocketed $30 after
taking in to account the $20 co-pay and CIGNA would have only been out $59 to the doctor office
so by abuse by some we all suffer... and I don't mean just those of us at this work place , but everyone who
has to pay for insurance ... the hospitals and doctors and insurance companies charge more to make up for
money they lose or pay out due to abuse like this
and on top of it all he let the child (6 years old) sit there with a splinter of wood running under her fingernail
up into her finger (it was about and inch long) and suffer just so he could make a buck >:( ... some
people are so stupid ...
We have Blue Cross Blue Shield of Tennessee /network S ... other network designations pay differently
enough ranting ...insurance dealings just make my blood boil
I did hear back and he thinks that the doctor associated with the anethesiologist group would be the right
one and luckily he is in Nashville ... I have to call him tomorrow and will talk to either him or his nurse
technition to see if he is the right choice ... things are moving fast and I am glad of it ... may take a couple
weeks to get in but what's a couple weeks after about 6 months of trying to get co-operation from the other
doctor ... wish me luck
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Consultation first week of September ... crossing fingers
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got the eyes and toes crossed as well... (its a bear to walk around like that, but... if it helps, then its worth it! ;D )
Phyl
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Good luck, Soundy.
Keep us posted,
Jan
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Soundy,
The doc I see who is a pain management specialist is with an anesthesiologist group. He's the one who gives me the nerve blocks which has given me the most immediate and drastic relief in the 5 1/2 years that I've been having these headaches. They are expensive and a high deductible kept me from seeing him before. That and his office didn't take my insurance at all. The reason I can see him now is because I got Medicare with my disability benefits which covers 90%. That and I didn't know about him because my neurologist never referred me to him before now! He works through my local hospital's pain clinic.
I used to drive 3 each way hours to see my headache neurologist. It was a brutal trip--windey mountain roads and my husband had to miss an entire day of work. After a year and a half I quit making the trip. I had found the right meds and didn't feel I was making much more progress. It was worth the trip to get me on the right track.
Best of luck!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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I got a weird letter in the mail from my surgeon... he is and I quote
" As of August 31 2008 , I am retiring from active practice. I will be moving on to a teaching position and will also
continue to pursue songwriting on a more serious level . It is the main reason I chose to practice in Nashville."
He included a list of doctors to provide continuing care for his patients...I am still sticking with the appointments
I have lined up and will also contact the list he provided... one is the surgeon who assisted him and on is the
BAHA man...
why when I fell did he not tell me this and send me on to another doctor if he was not going to be
continuing???... he said to keep the December appointment with him ... the letter was mailed Monday but date on
letter is August 14th ...
OH well ... done fired him anyway , but still strange that he didn't say anything when I talked to him
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Songwriting? Oh wow, that's funny. The Singing Surgeon. Well, his mind wasn't on the game, now was it? Well, when he's on the CMA Awards, you can say, I Knew Him When. If he gets that far!
What a hoot.
Sue in Vancouver, USA
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Soundy~
That is really kind of funny...Songwriting?? Is he going to write songs about his experiences cracking open people's skulls??? ???
K
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Hey, maybe I'll run into him around town. I should be able to spot him with his scrubs, surgical mask and cowboy hat. ;) If I see him playing his guitar on a street corner downtown, I'll throw a little spare change his way.
Soundy, on a serious note, it's possible that your doctor wasn't sure of his move when you saw him last, so he didn't want to say anything yet. Or it's possible he hadn't told his co-workers yet. When my doctor was leaving Nashville for a new position (I guess he wasn't an aspiring songwriter), I heard about it through the doctor grapevine before his office staff knew about it (the benefits of being a nurse and having your child attend the same preschool as the doctor!). Sometimes these transfers happen fast because if they don't accept the position, chances are there are 50 more doctors who will jump at it. It is strange, but I don't think I'd worry too much about it or read too much into it.
Lori
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They have doctors like this in every field. My first neurotolgist ask my why I didn't want surgery. I said the 3 D's. He said he never heard of it. I said Death, Disfigurement and Disability. He said "Well you have lead a full life haven't you" Zap he was gone. That man was not touching my brain.
Yesterday it was my cardiolgoist. First the pulled up the wrong patient. My last name is not Leah and I am not 74 years old. Then they couldn't find my med record. Then the doctor came in and when I said I had a couple of questions he said he was on a tight schedule. Dang, I pay $396 dollars a visit. Last time he spent 1 minute 21 seconds with me and the time before it was 1 minute 42 seconds. Yes, I time him. I wanted a different blood pressure med. I said I had researched and found a certain pb med. seems to control aneurysms. He said Oh, I wouldn't give you that any way I would give you something else. I said no, I don't want the thing to grow, I want to try that med if it isn't going to harm me. He said what makes you think you haven an aneurysm? I said you said I did and an ascending aorta that measures 4.24 cm is an aneurysm. He said where did you get that idea. I said Cleveland Clinic online information. He said stay off the internet, it isn't good for you. This man did not look at my chart one time. He scheduled me for a March appointment. I said save your self the trouble, obviously you don't have time for your patients, give my less than 2 minutes to someone else. there are plenty of cardiologist in this town I am sure I can find on who can take 10 minutes out of a busy day to listen to me once every 6 months.
Bah, hum bug and a pox on bad uncaring doctors. There would be a lot less of them if we would take a stand and let them know you are going to spread the word.
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I think I pushed him over the edge and he quit :)
my doctor had talked to him on the 12th and then I talked to his nurse and him on the 14th or 15th
and not a word of retirement just told me to keep the December appointment...but since letter was
typed up on the 14th he had to know...
he trained at House and has been doing this for about 25 years ... guess he got tired of poking around
inside heads... gonna just do it on the side and teach now... burn out maybe ...
He did say it was an agonizing decision and apologized for inconvenience to all his patience
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I think I pushed him over the edge and he quit :)
Well, if you did Soundy, his next song might be about you ;)
Like a few others here, I find the surgeon/songwriter connection very strange, but you never know. Maybe some of my doctors have aspirations to write songs also :D
Okiesandy -
this is strictly my opinion, but I think you need to start thinking about firing the doctor you mentioned in your post. A number of things about your post appalled me - no time for questions, no recollection of a diagnosis he gave you, extremely short visits, etc. While I certainly appreciate docs being pressed for time and having to deal with lots of different patients, IMO the treatment you are receiving "just ain't right".
Hey, perhaps I could write a song about that :P
I have to add one more thing here - if nothing else for the newbies among us. The 3 D's that you mention aren't givens for surgery. I chose surgery and am neither dead, disfigured, or disabled - at least not the last time I looked. Yeah, I supposed technically I could be called disabled because I'm SSD, but IMO that's not a disability - just a life-alterating event.
Jan
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I agree with Jan... if he doesn't have time for you you need to find someone that does... up until after
surgery and my doctors OK you're fixed now attitude the shortest time an appointment lasted with
him was probably about 15 minutes... he got to know me and what I did in my life (Scouts ,subbing at
school , farm life etc ) , listened to fears as far as how surgery would change my life , he went over on
numerous visits the different approaches and advantages of each and disadvantages... it was nothing to
talk with him for 30 minutes...wish he didn't change so much ...
I am not dead or disfigured and I wouldn't say really disabled... I have debilitating headaches at times but
the deafness is more of an inconvenience than diabilty...
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Do you ever just get so disgusted with things til you want to crawl in a hole and hide??? I am looking for a hole to crawl into...
I got a call Friday ...the new doctor I was suppose to see has taken himself of the BCBS of Tennessee part S because it is slow paying ... when you have S you gotta pay a butt-load of money out before it starts picking up and I imagine it was slow paying patients instead of slow paying insurance
Got several new recommendations ...one for a doctor that has clinic hours in Huntsville and Decatur Alabama ...
37 and 33 miles respectively away from me ...but BCBS will not pay them because they are out of Tennessee
even though they except BCBS part S ... then they (BCBS) gave me the name of a doctor in Atlanta Georgia (223
miles away) that also practices in Chattanooga Tennessee (138 miles away) ...
I have been going through the directory of doctors that BCBS gave us and looking up any and all possibilities by
googling their names in the city listed ... the directory just gives name and specialties ...no phone numbers ... I have
a list of doctors in a 100 mile radius of me that are in Tennessee and will start dialing numbers Tuesday and narrow
it down and give a list to my regular doctor on Thursday for him to go over and find someone new
I can go out of network to anyone but only half of what I pay them will be deducted from the high deductible and
out of pocket we have to pay out instead of the 100% coming of for in network ...
I am going back to insurance rep at work and start an appeal... one of the BCBS people I spoke to who was nice and
said that part S had many complaints ...she told me I can file an appeal if I can prove that going to one of the out of state
doctors would benefit me more than driving all the way to Timbuktu to see someone and have them covered as in network ...
she told me to make sure and put in the appeal that I would travel 4 lane state highways and rural routes to get to
Huntsville and to get to the others would spend a longer time driving and much of it on interstates with higher speeds
and higher numbers of vehicles traveling with higher rate of accidents and more semi-truck traffic... she said to make sure
that it was written up that the excess driving in worse conditions brought on a worsening in my symptoms
(headaches , nausea ,dizziness etc) ...so now to get seen closer to home and be covered I have to compile traffic information
and make my own diagnosis of stress induced headaches >:( ...
also in report will be that dealing with searching for an in-network doctor and speaking to more idiots from BCBS than helpful
people also brings on symptoms ... but I have to find a nicer way to word that :)
I am so unbelievably tired of this mess ...
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WOW Soundy, I just read your posts and I sure am sorry you are having to deal with ALL of this and headaches! I cannot offer any advice and I wish I could help with your pain and a proper doctor. ....waking up to you and putting my arms around you lovingly."All I can do is pray you find that caring doctor who will take away your pain.
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Jan,
Consider the cardio fired. He is one of the owners of a heart hospital here. Came with a great referral from another doctor.
I fired the psudo neurotologist several years ago. My husbands cousin had surgery by him the year before and we thought he had a stroke. 6 or 7 surgeries, could not get CFS leaks stopped. Gold weights in his eye. Continual cheek biting, inabality to even count or do any kind of math. He had to give up his business and to this day walks with a cane. I did not find out for seveal months what was wrong with him or I would not have gone to this doctor. The same doctor told me the guy was just gold bricking. Many, many other things I will not go into here. Before my AN was confirmed this same doctor told me he had done 25 to 35 AN surgeries and another doctor in his pracitce had done the most about 135. This is over a 10 and 15 year span. I think from checking the number of AN surgeries per year at the only hospital they do surgery at. When the AN was diagnosed the number grew to Dr. God doing about 200 and the other doctor doing thousands. No way!!! Or we may have had an epidemic in those two weeks.
We begged our insurance company to allow us to go out of state. No deal. House Clinic allowed us a great cash deal. We would have had to mortgage our house to do that. I was always very uneasy about the surgery. However, I had never considered radiation. At the last minute one of the posters on this site told me about Dr. Medbery and I thought might as well at least talk to him. I did and still didn't make up my mind. It wasn't until I talked with a neursurgeon that I chose CK and have never looked back. I seldom post on here anymore because I just don't have any problems and the AN just seems like something in a past life. I have never missed a day of work because of the treatment. All has been a plus for me. No more facial numbness, tinnitus much reduced, improved balance. I didn't have hearing before treatment and didn't get it back. I can live with that.
Is very, very important to be sure of your doctor and do your research. I would have believed Dr. God if he had not told me on the very first visit that he had done only 25 to 35 because they were very rare. weeks we had an We may be a number to the doctors, we are number 1 to us and our family. We always need to think for ourselves and do the research. Mine came with with other patients that I dug out of the woodwork, not the one's referred to me by the doctors. This was the finial decision for me. Quality of life and a great out come. I know there is no guaranty with any treatment. I just saw way too much bad surgery in this city. There are really no experts here when it comes to surgery. It is like a shark feed to get to the AN patient and get'er out. I am surprised my Vet didn't want to do it. Just because a doctor says it does not mean it's true. Maybe that would be a good song title? There are good doctors out there, it is finding them that is sometimes hard to do. I never intend to be treated like this by another doctor.
Sandy
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I never intend to be treated like this by another doctor.
Amen to that!
Jan
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Maybe good news... I had to take my mom to a doctors appointment yesterday and missed the
call but I did get a message from one of the doctors in Nashville that is willing to look me over ,
read my file and take me on if he thinks he can help... have to call Monday and set up an appointment
not celebrating yet but have a good feeling...
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...on knees, head bowed, fingers and legs crossed I pray you get the care you so deserve.
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Well I got an appointment , but not until November 17th ... my regular doctor wants me seen
sooner because of increase in headaches since my fall in August that caused some swelling at base
of skull ... he is working on that for me ...
he is still looking at other doctors ... since I only have to give the one who has agreed to see me
a 24 hour cancellation if I don't keep the appointment , I am keeping him on the list in case we find
someone that will see me sooner or seems like a better choice...
So mixed results in my quest to replace my guitar picking ex-doctor :)