"Marie", has a new primary care "Doctor" now

I am glad that you missed the car accident, and are home safely. It is terrible that they are putting off helping you because something was not filled out properly !
It seems like they should be doing a lot more to be helping you right now.

Maybe try calling the council on aging for your area and see if they can help you get the doctor appointments and help set up faster ? They are there to help seniors, so they should have some ideas to help with Medicare and seeing a doctor sooner.
 
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Yvonne Smith said:
I am glad that you missed the car accident, and are home safely. It is terrible that they hare putting off helping you becasue something was not filled out properly ! It seems like they should be doing a lot more to be helping you right now. Maybe try calling the council on aging for your area and see if they can help you get the doctor appointments and help set up faster ? They are there to help seniors, so they should have some ideas to help with Medicare and seeing a doctor sooner.
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Yvonne, they are busy, lots of people from all over the world go to UF in Gainesville,Fl.where I go.
Although everyone is very nice and caring so far.
 
Marie Mallory said:
What a day, we left at 7am drove 35 miles to doctor outside is dark with smoke, seen doc at 10am,said paperwok was not sufficiant5 so set appt ahead to ?

AC went out in van, Jake pulled out of parking lot into street one second later would've been head on collicion.I screamed just in time.
Went to Mac D's for burger on way home, took 30 minutes in reserved space for one burger,fry.
We are back home,thank God!!
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It was trying for sure; but I pulled around from the back of the restaurant, which was packed and car was coming I didn't see him at first,f but he had room because I didn't pull out all the way. Not sure why ac quit for a while but when we hit that bump coming off interstate it started working.
 
What bone Dr said; is he wants to review all images, that were taken and get a pet scan from head to toe; because MRI and cat scans were only taken from waist down. wants to do biopsies, and will be calling after he gets a team together; to help Marie. For some reason no one told us about a MRI disk we needed for biopsies, they said they need it because of where masses are; it's "critical", that it's under a scan to be sure to not hit certain vitals nerves and arteries that can cause serious damage to her spinal chord. They done some more X-rays on her while there. He said he knows her oncologist too.

"Hopefully"; they will help her soon, before we are totally exhausted from this. Seeing her go through this pain while watching and helping her up and down, is "unbearable" to see. Makes you feel "helpless".
 
Jake Smith said:
What bone Dr said; is he wants to review all images, that were taken and get a pet scan from head to toe; because MRI and cat scans were only taken from waist down. wants to do biopsies, and will be calling after he gets a team together; to help Marie. For some reason no one told us about a MRI disk we needed for biopsies, they said they need it because of where masses are; it's "critical", that it's under a scan to be sure to not hit certain vitals nerves and arteries that can cause serious damage to her spinal chord. They done some more X-rays on her while there. He said he knows her oncologist too.

"Hopefully"; they will help her soon, before we are totally exhausted from this. Seeing her go through this pain while watching and helping her up and down, is "unbearable" to see. Makes you feel "helpless".
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I can only imagine your exhaustion at this point, Jake. I'm exhausted just reading about the run-around you are getting by the medical establishment. It's infuriating to read.

You need to try to relax and try to rest when you can. Let small things slide and take a nap or ride the tractor. You and Marie are likely in for a year or so of treatment if it ever gets started so you both need to take care of yourselves as best you can.

I hope the a/c issue with the van was just a glitch. I swear, when it rains, it pours.
 
Beth Gallagher said:
I can only imagine your exhaustion at this point, Jake. I'm exhausted just reading about the run-around you are getting by the medical establishment. It's infuriating to read.

You need to try to relax and try to rest when you can. Let small things slide and take a nap or ride the tractor. You and Marie are likely in for a year or so of treatment if it ever gets started so you both need to take care of yourselves as best you can.

I hope the a/c issue with the van was just a glitch. I swear, when it rains, it pours.
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Thanks Beth, you hit the nail on the head. It's almost impossible for me to nap during the daytime for some reason, and that's why I'm being worn down. Anyway I came back to say one more thing that I told bone Dr. I told him this is a sixty mile trip for us every time; and she is in severe pain doing it, for over six months now thinking it was pulled muscles, she needs help and "soon".
 
I just cannot believe any Oncologist would set up a biopsy and not send the place doing it the MRI and Scan as a digital file. This is quick and easy to do! Next is why the hell didn't the biopsy place tell you a week ago to bring a disc of the MRI and scan with you, since they didn't have one from the doctor? This smells of either incompetence or outright just not caring, perhaps even stalling because you are on Medicare. Maybe they are seeing other patients that have better paying insurance.

Generally Oncologist have a direct connection to the labs and other doctors they use. If that was the case, then no reason the biopsy doc couldn't have looked up the MRI within minutes. I simply can't believe this has and is happening to you. If just one thing, that is understandable, but one major mistake or oversight after another, is unacceptable.

It sounds as though you need a cancer advocate to get this mess on track. You might check to see if your area has such. We have a retired Oncology nurse that volunteers to help any older patients get the right treatment and understand what the doctors are telling them. I would highly advise you find a knowledgeable advocate, before any more time is lost. Time is of the essence.

If the ER docs saw that T-12 had a tumor, then they did an MRI above the waist. T-12 is at the bottom of the rib cage, slightly above ones natural waist, and is where Thoracic meets the Lumbar. S-1 is above the tailbone and cancer there won't directly "eat up" the tailbone. The ER doctors had to assume that your cancer is metastasized and has spread to the Coccyx or tailbone, from S-1, and is destroying it. With that assumption, they should have had you to an Oncologist that should have ordered a PET scan and biopsy, immediately. That doc is the one responsible for getting all your info to the other testing doctors.

Call the American Cancer Society in Gainesville ... 800-227-2345 they can direct you to help and the support you need.
 
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Faye Fox said:
I just cannot believe any Oncologist would set up a biopsy and not send the place doing it the MRI and Scan as a digital file. This is quick and easy to do! Next is why the hell didn't the biopsy place tell you a week ago to bring a disc of the MRI and scan with you, since they didn't have one from the doctor? This smells of either incompetence or outright just not caring, perhaps even stalling because you are on Medicare. Maybe they are seeing other patients that have better paying insurance.

Generally Oncologist have a direct connection to the labs and other doctors they use. If that was the case, then no reason the biopsy doc couldn't have looked up the MRI within minutes. I simply can't believe this has and is happening to you. If just one thing, that is understandable, but one major mistake or oversight after another, is unacceptable.

It sounds as though you need a cancer advocate to get this mess on track. You might check to see if your area has such. We have a retired Oncology nurse that volunteers to help any older patients get the right treatment and understand what the doctors are telling them. I would highly advise you find a knowledgeable advocate, before any more time is lost. Time is of the essence.

If the ER docs saw that T-12 had a tumor, then they did an MRI above the waist. T-12 is at the bottom of the rib cage, slightly above ones natural waist, and is where Thoracic meets the Lumbar. S-1 is above the tailbone and cancer there won't directly "eat up" the tailbone. The ER doctors had to assume that your cancer is metastasized and has spread to the Coccyx or tailbone, from S-1, and is destroying it. With that assumption, they should have had you to an Oncologist that should have ordered a PET scan and biopsy, immediately. That doc is the one responsible for getting all your info to the other testing doctors.

Call the American Cancer Society in Gainesville ... 800-227-2345 they can direct you to help and the support you need.
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I think an advocate is needed too, to help look after Marie's best interest and get her the tests and treatments she needs. I was my Dad's advocate during his illness, making sure he got to all his doctor appointments and helping him decide what to do. My dad was very independent and head strong, but he said he needed someone with a clear head to help him navigate through it all.
 
Faye Fox said:
I just cannot believe any Oncologist would set up a biopsy and not send the place doing it the MRI and Scan as a digital file. This is quick and easy to do! Next is why the hell didn't the biopsy place tell you a week ago to bring a disc of the MRI and scan with you, since they didn't have one from the doctor? This smells of either incompetence or outright just not caring, perhaps even stalling because you are on Medicare. Maybe they are seeing other patients that have better paying insurance.

Generally Oncologist have a direct connection to the labs and other doctors they use. If that was the case, then no reason the biopsy doc couldn't have looked up the MRI within minutes. I simply can't believe this has and is happening to you. If just one thing, that is understandable, but one major mistake or oversight after another, is unacceptable.

It sounds as though you need a cancer advocate to get this mess on track. You might check to see if your area has such. We have a retired Oncology nurse that volunteers to help any older patients get the right treatment and understand what the doctors are telling them. I would highly advise you find a knowledgeable advocate, before any more time is lost. Time is of the essence.

If the ER docs saw that T-12 had a tumor, then they did an MRI above the waist. T-12 is at the bottom of the rib cage, slightly above ones natural waist, and is where Thoracic meets the Lumbar. S-1 is above the tailbone and cancer there won't directly "eat up" the tailbone. The ER doctors had to assume that your cancer is metastasized and has spread to the Coccyx or tailbone, from S-1, and is destroying it. With that assumption, they should have had you to an Oncologist that should have ordered a PET scan and biopsy, immediately. That doc is the one responsible for getting all your info to the other testing doctors.

Call the American Cancer Society in Gainesville ... 800-227-2345 they can direct you to help and the support you need.
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Faye our insurance,'AARP UHC is suppose to be pretty good, I know it sure cost alot,I don't know why they didn't tell me to bring the disk.
Today this new doctor said he is putting a team together to get on with this, guess we'll see.
Thank you for the phone number, I'll give them a call if things don't happen next day or so.
 
Marie Mallory said:
Faye our insurance,'AARP UHC is suppose to be pretty good, I know it sure cost alot,I don't know why they didn't tell me to bring the disk.
Today this new doctor said he is putting a team together to get on with this, guess we'll see.
Thank you for the phone number, I'll give them a call if things don't happen next day or so.
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My point was that you are on Medicare and some doctors hate it because they get discounted and your secondary, AARP, also uses the Medicare discount to pay their share. No doc can bill AARP for more money than Medicare allows them. It is against the law for any Medicare approved provider to put a Medicare patient lower on the list than one with a higher paying private insurance, but it happens.

It is great your new doctor is putting together a team. Maybe the team will have an advocate.
 
Faye Fox said:
My point was that you are on Medicare and some doctors hate it because they get discounted and your secondary, AARP, also uses the Medicare discount to pay their share. No doc can bill AARP for more money than Medicare allows them. It is against the law for any Medicare approved provider to put a Medicare patient lower on the list than one with a higher paying private insurance, but it happens.

It is great your new doctor is putting together a team. Maybe the team will have an advocate.
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I'm feeling better about this new doctor, he seems to be more interested and I like his personality, and told him so. I said." I like your personality and attitude, he smiled shook my and Jakes hand and said,' I like yours too'.
 
Faye Fox said:
My point was that you are on Medicare and some doctors hate it because they get discounted and your secondary, AARP, also uses the Medicare discount to pay their share. No doc can bill AARP for more money than Medicare allows them. It is against the law for any Medicare approved provider to put a Medicare patient lower on the list than one with a higher paying private insurance, but it happens.

It is great your new doctor is putting together a team. Maybe the team will have
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Faye, one of the current things is booking. Booking as much as the system will allow. SO is still in pain management. It used to be a 20 minute and well scheduled event. Now it is telehealth with PA, face to face with actual provider, injection appointment, follow up in person. Here 80-100 miles round trip are normal because that is the lay out of Oklahoma City.
 
Jake Smith said:
Try to keep up, and take a little time on a tractor carrying the two way radio. Haven't looked into any bathroom / showers, had put up pull bars and such in the one she uses a while back. Emotions really run high, in trying times.
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Jake, Marie

I feel awful hearing about the runaround the two of you are getting. Of course your emotions are running High, I know you've been told numerous times to try and relax and I agree with that. Even if you can't sleep lying on your back and closing your eyes for a little bit can help, doesn't matter the time of day.

Something just doesn't feel right with this whole process I would call for information from the American Cancer Society or some other organization and ask what is the process to getting a biopsy. This way you'll know what is needed and what to expect.

I wish you both well.

Tony
 
Tony Page said:
Jake, Marie

I feel awful hearing about the runaround the two of you are getting. Of course your emotions are running High, I know you've been told numerous times to try and relax and I agree with that. Even if you can't sleep lying on your back and closing your eyes for a little bit can help, doesn't matter the time of day.

Something just doesn't feel right with this whole process I would call for information from the American Cancer Society or some other organization and ask what is the process to getting a biopsy. This way you'll know what is needed and what to expect.

I wish you both well.

Tony
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Tony yesterday a new doctor came onboard. He said he will put a team together and get treatment going.He wants a head to toe pet scan.
I think and hope things will change now. I'll let yall know when he calls.
Today we went up to seniors meeting here in town, haven't been since Covid. Most of them are still there.It was good to get out and be around other people.
 
Marie Mallory said:
Tony yesterday a new doctor came onboard. He said he will put a team together and get treatment going.He wants a head to toe pet scan.
I think and hope things will change now. I'll let yall know when he calls.
Today we went up to seniors meeting here in town, haven't been since Covid. Most of them are still there.It was good to get out and be around other people.
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That 's GREAT!!!
 
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