Starting Over with Doctors

Posted by gcranor @gcranor, Nov 7, 2021

I wish there was away to start over with talking to doctors as I feel like I keep chasing medical problems as individual problems. I have a Medtronic's pump and stimulator implanted, nerve damage, pain in both hips, back, legs, lung issues (from the drugs in the drug pump), urology issues, fusions (from S-1 to t-10), I was hurt when I fell in a elevator shaft in 1974, migraines, and dementia. My doctors currently really do not talk to each other and just treat there areas and not all of me. With dementia I answer doctors with yes before the questions sinks in and the nerve damage mask allot of the issues. If I could start over with a team of doctors I would just list the issues and have them work together and could up with what is the underlining problem and a plan to move forward. Can this be done? I am tired but have not given up!

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@gcranor I think what you are expressing is a desire many people have over time, especially when dealing with multiple, complex symptoms and diagnosis. It takes a great deal of work to manage it all on your own, and, quite honestly, is more than most people can and want to deal with.

For that reason, and many others, I would highly recommend considering seeking care at a hospital whereby doctors work across departments and form multi-disciplinary teams dedicated to connecting the dots, per se. Here is a link to read more about multidisciplinary care at Mayo Clinic.

– Why Choose Mayo Clinic:
https://www.mayoclinic.org/why-choose-mayo-clinic
Is this the type of care that you feel would be beneficial to pursue if you were to "start over"?

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Did you ever think of seeking an alternative medicine dr (not MD) like naturopath or one who can merge being an MD with integrative medicine? I am not suggesting you give up completely on the care you have yet even though it does not meet your needs. I am saying that if you try something different you may get different results. MD's are regulated to work only in their area of expertise which is why you are getting a piecemeal approach. If another approach helps you moving forward you are starting over.

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I agree with @krisjb1 about alternative medicine but a team at a large medical center. Most big ones UPenn, Stanford, NYU Langone, etc. since you have a complicated medical history you’ll need a large center. We don’t live forever and our bodies are made to breakdown. You don’t mention your age and with your multiple illnesses also consider emotional support from a therapist, clergy, family, etc.

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@amandajro

@gcranor I think what you are expressing is a desire many people have over time, especially when dealing with multiple, complex symptoms and diagnosis. It takes a great deal of work to manage it all on your own, and, quite honestly, is more than most people can and want to deal with.

For that reason, and many others, I would highly recommend considering seeking care at a hospital whereby doctors work across departments and form multi-disciplinary teams dedicated to connecting the dots, per se. Here is a link to read more about multidisciplinary care at Mayo Clinic.

– Why Choose Mayo Clinic:
https://www.mayoclinic.org/why-choose-mayo-clinic
Is this the type of care that you feel would be beneficial to pursue if you were to "start over"?

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Yes; but am at VA and I am sure they will not refer me to the Mayo Clinic. I have a daughter to stay with in Jacksonville; but the VA will not do the referral as they believe they are best.

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@jenatsky

I agree with @krisjb1 about alternative medicine but a team at a large medical center. Most big ones UPenn, Stanford, NYU Langone, etc. since you have a complicated medical history you’ll need a large center. We don’t live forever and our bodies are made to breakdown. You don’t mention your age and with your multiple illnesses also consider emotional support from a therapist, clergy, family, etc.

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I am 64

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In reply to @gcranor "I am 64" + (show)
@gcranor

Are you disabled? You need to find someone who is a trouble shooter to rally on your behalf if you cannot. The squeaky wheel will not get you anywhere. I’m pretty sure the VA has ombudsman for patients and I know your rep in congress would like nothing more than to help a vet get help.

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@gcranor

Yes I am a disabled veteran

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Well, that is the issue. My husband is also partially reliant upon the VA for medical care. Thank goodness he checked around before giving up his primary medical insurance because trying to get help from the VA has been nearly impossible. He has difficulty understanding the dr. when he does actually see him (rarely) because the dr. has a strong accent. There is no way to actually speak with the dr by phone without a very long wait-weeks. If there is a mix up and a phone appt. is missed the veteran will be penalized even if it has not been due to his own fault. I could say more but I would imagine you have run into some of these situations. Where is medical care in all this? It is definitely the lowest priority in a system that is not working to benefit the health of the subscriber-you. The alternative health field is not going to accept insurance anyway so no loss if you don't have another form of insurance than the VA. But it is not inexpensive to visit those practitioners. If you can afford it that is really the way to go if the treatment you have been receiving is not helping you.

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I would be surprised if the VA doesn't have patients' ombudsmen or social workers to help coordinate the care of veterans, especially if you also have to deal with dementia .Maybe you can make an appointment with a social worker there to discuss options. It would be helpful for you if you could bring another person to help keep notes.

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Unfortunately ombudsman stay out of the doctors decision and say ok let’s try that!

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Well they do work for the institution where you're seeking help from. They wouldn't be very good if they assumed an adversarial position.

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There are a range of VA hospital care. Just like all hospitals. Some are praised for their care of patients, while others are notorious for providing less than satisfactory patient care. Many times the Military social organizations, such as the American Legion and VFW can help in dealing w/ the VA system.

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