Rant: Sometimes doctors just won't listen

[KElizabeth]

I'm so tired of dealing with doctors who show up to appointments without reading my records and sit through the appointment with out listening to my description of my symptoms. This type of BS is exactly why I was not diagnosed 1 year earlier than I was. Sometimes they listen to only part of what I say , sometimes they just don't take me seriously. I spend time to prepare for my appointments by making lists, Journaling my symptoms and all the different things I have tried to alleviate them. I make a list of everything I want to ask them about. I do my research to help me ask pointed questions. The least they could do is show up ready to listen, or if they just can't listen that day, reschedule for a day when they can.
Since December (3 months after starting Folfiri plus Avastin ) I have been suffering odd headaches at the base of my scull and two inches into my neck. I have other associated symptoms such as hyperaccusis, and tinnitus. They are sudden onset and can last for minutes This happens throughout the day and is getting worse progressively. I need someone to take me seriously. None of the pain meds or nerve pain meds are working to control the pain. None of my doctors will do anything to look into the cause or even suggest a cause. Each time I mention my headache to my oncologist he just suggests different meds, or biofeedback. I've done biofeedback and still the headaches. I am just so tired and need help. I don't want more meds that affect the quality of my life.

Anyway thanks for listening to my pathetic rant.

Elizabeth

[stu]

Please don't think any of what you have written is pathetic . I just feel so sad that you are going through so much and not being heard. My husband is a Doctor and also a really good son-in-law. He was able to go with my mum for a lot of her initial appointments. I took over as we are seven years into this!!! However he comes to the decision making appointments. It has been one of the best education tools for him. Some doctors have been fantastic in their communication and care. Others have rendered him speechless. He also is an educator for students in his speciality and he would go as far as saying some of the Doctors he has come across would not pass their communication section.
If you feel up to it email the points you want actioned. I have a strong sense when someone is working with my mum. I may not always agree with the judgement but I get they are involved. Others my elbows come out. You have got to really.
Take care,
Stu

[KElizabeth]

If you feel up to it email the points you want actioned. I have a strong sense when someone is working with my mum. I may not always agree with the judgement but I get they are involved. Others my elbows come out. You have got to really.
Take care,
Stu

Thank you Stu. I appreciate the support. I really should just email my doctor my agenda for the visit before my appointments. It's hard to get a diagnosis when I only see the specialists once every 3 months. Maybe reminding them of my purpose for the appointment beforehand will make the half hour more productive.

[mypinkheaven]

. I really should just email my doctor my agenda for the visit before my appointments. It's hard to get a diagnosis when I only see the specialists once every 3 months. Maybe reminding them of my purpose for the appointment beforehand will make the half hour more productive.

I think that's a very good idea. You can print up the email and hand it to the doctor he/she isn't paying attention.

I'm sick of having half of the appointment taken up by the doctor typing notes into the computer - watching them and waiting for that time when I can interrupt and ask a question. And then, when I get my medical records, I see that they wrote stuff they never said to me.

[canadiandaughter]

We have to fill out this two page chart. Dads last appt we sat down with him at home prior to going to discuss what we would say on it from how he was feeling to what we were noticing. His response was, I am not sure why we fill it out, they don't read it!!! We disagreed with him but soon found out he was SO right!!! We had checked off some very important issues he was having and neither were addressed until we finally brought them up after the nurse put the chart away. We also had some questions written the the box labeled questions and they were not answered either. Very frustrating when you put a lot of time and thought into each quesiton.

[CRguy]

Patient advocacy is a big concern of mine. My approach is to just keep pushing until I get a response I am comfortable with, from a Doc I want to deal with. I know we cannot always get the exact responses we need and when that happens, I get another doc. Not everyone can change so easily and not everyone is comfortable nor conversant with the "experts" ..... BUTT having been a vet and patient and caregiver .... I NEED docs who are "there" for me and I won't settle for less. If that means kicking a doc to the curb and starting over ... so be it.

IMO there are 3 kinds of docs :
docs who talk AT you ... giving you the standard discourse they want to give you, whether it is right for you or not.
docs who talk TO you ... giving at least some semblance of knowing a bit about your own situation.
docs who talk WITH you ... an interchange between you and them, about YOUR situation in a bilteral exchange of opinions and facts.

after 65 years on the planet, 35+ as "the doc" and ten as the patient/caregiver .... my docs are all of the third type. I come prepared for the visit and I expect them to as well.

Commenting on this topic specifically :
- emailing or faxing info to them before a visit can be a good idea
- keep asking the questions you need answers to
- if they are "too busy" then ask if they have an assistant, nurse, resident who could help you instead
- use your family doc or GP to help you navigate the "experts"
- ask for and collate copies of all tests, results, reports etc. and even exam notes ( this info is YOURS to obtain legally )
- don't settle for being shuffled around with no success
- play the cancer card to get what you NEED from the docs and office staff
- be prepared to be a bit of an asshole to deal with surly/overbearing office staff ONCE they have messed things up ... BUTT ...
- start off being friendly, asking for their help, and show them appreciation and respect when you start dealing with them
- try to make yourself a "person" in their eyes, not just a disease or case number

so in no particular order, the above are some of the things which have worked for me over the years, and yes..... I have kicked docs to the curb and very rarely shit all over an asshole office assistant/receptionist or nurse.

It is MY life which is my primary concern ... not the docs or nurses' bad day

JMO
here's to happy sailing thru the medical systems folks !

Cheers and Harmony
CRguy

[rp1954]

In my book, task no. one was what he's done to make sure it' s the chemo and not something else. What did he say or do?

Assuming he thinks it's the chemo - 5FU, Avastin and/or irinotecan, I'd grill him to get a short list of all possible options he can think of - changes to dosages or (add) another med.

Then I'd do outside consults, including with a different kind of support - maybe a cancer CAM oriented internal medicine MD or ND. Supplements and IVC have helped some patients on folfiri + Avastin a lot. Our board member mentioned there were many more such patients at her clinic in BC.

[bitchslapped]

And then, when I get my medical records, I see that they wrote stuff they never said to me.

No kidding! "Advised the patient...blah, blah, blah. Uh, NO YOU DIDN'T. I saw that several times. If you ask too many questions, they can even get suspicious re: malpractice. Those notes feel sometimes like CYA (cover your ass).

Specialists aren't always known for their chair side manner & communication skills, but I brought in typed notes of symptoms I tracked on a calendar in order of priority & frequency. I presented it in "outline" form on a sheet of paper i.e., I, Ia, Ib, II, IIa, IIb format & just handed it to the gastro. He read it, addressed the issues, AND wanted to keep it for his file. This wasn't our first visit to this particular gastro specialist who was top notch in the area, but I felt w/so many issues my DH was having, the doc may respond better to the organized, written word vs blah, blah, blah from me, the caregiver for my DH. He did.

So my suggestion: typewritten if you can such as: I. Side Effects or Continuing Issues
1a) headaches ev day, beginning (the date) mornings for a couple of hrs.
1b) muscle spasms legs, 4x/wk

II. New Issues
IIa)xxxxxx
IIb)xxxxx

If you keep something like this ongoing, it's not so bad. As I said I tracked on a calendar as my DH had so many I would have never been able to keep all of them & frequency in my brain. For the patients, a little more difficult maybe if you're too sick to bother, but I think it is worthwhile if you can.

For the record: Vets as a rule are much better communicators. Must have something to do w/the fact their patients can't speak for themselves!

Best Wishes
BS

[CRguy]

For the record: Vets as a rule are much better communicators. Must have something to do w/the fact their patients can't speak for themselves!

Best Wishes
BS

WELLLL .. thank ya' thank ya' very much

YES I agree mostly because the "patient" and the disease/problem/issue can be separated for the purpose of discussion.
I talk with an owner about the pet's problem. Docs are talking TO the patient about THEIR OWN problem ... different dynamic for the most part.

sometimes ... not always, BUTT sometimes can make us better clinicians/diagnosticians as well. We also get to filter out the influence of human emotional intervention while assessing the actual case as presented.

Once had a lawyer tell me " Stay away from doctors and lawyers and you'll do well. "
I said "What about vets ?"

His reply : " You'll be fine. Nobody has anything bad to say about vets ! "

[KElizabeth]

.
I'm sick of having half of the appointment taken up by the doctor typing notes into the computer - watching them and waiting for that time when I can interrupt and ask a question. And then, when I get my medical records, I see that they wrote stuff they never said to me.

My oncologist has residents check in all patients before he will see you. They ask all the same questions as the nurse, then ask you to tell them your history back to when you were diagnosed. I think the average time with the Doctor is 10 minutes. Still, I do think I great care, especially from his nurses.

I'm so tired of questionairs and appointments that are like speed dating.

[KElizabeth]

In my book, task no. one was what he's done to make sure it' s the chemo and not something else. What did he say or do?

Assuming he thinks it's the chemo - 5FU, Avastin and/or irinotecan, I'd grill him to get a short list of all possible options he can think of - changes to dosages or (add) another med.

Then I'd do outside consults, including with a different kind of support - maybe a cancer CAM oriented internal medicine MD or ND. Supplements and IVC have helped some patients on folfiri + Avastin a lot. Our board member mentioned there were many more such patients at her clinic in BC.

My oncologist won't even consider that the headaches could be related to chemo or cancer. I am fairly certain that he believes they are either caused by stress or are a figment of my imagination. I am looking forward to seeing my incredibly busy but excellent neurologist in a month because she takes me seriously and is trying to get to the bottom of my pain issue and my sudden hearing loss.
the culprit may just be the avastin. I will likely have to just deal with the headaches if that's the case so I would be interested to hear what supliments others are taking to reduce pain associated with treatment.

[KElizabeth]

And then, when I get my medical records, I see that they wrote stuff they never said to me.

No kidding! "Advised the patient...blah, blah, blah. Uh, NO YOU DIDN'T. I saw that several times. If you ask too many questions, they can even get suspicious re: malpractice. Those notes feel sometimes like CYA (cover your ass).

Specialists aren't always known for their chair side manner & communication skills, but I brought in typed notes of symptoms I tracked on a calendar in order of priority & frequency. I presented it in "outline" form on a sheet of paper i.e., I, Ia, Ib, II, IIa, IIb format & just handed it to the gastro. He read it, addressed the issues, AND wanted to keep it for his file. This wasn't our first visit to this particular gastro specialist who was top notch in the area, but I felt w/so many issues my DH was having, the doc may respond better to the organized, written word vs blah, blah, blah from me, the caregiver for my DH. He did.

So my suggestion: typewritten if you can such as: I. Side Effects or Continuing Issues
1a) headaches ev day, beginning (the date) mornings for a couple of hrs.
1b) muscle spasms legs, 4x/wk

II. New Issues
IIa)xxxxxx
IIb)xxxxx

If you keep something like this ongoing, it's not so bad. As I said I tracked on a calendar as my DH had so many I would have never been able to keep all of them & frequency in my brain. For the patients, a little more difficult maybe if you're too sick to bother, but I think it is worthwhile if you can.

For the record: Vets as a rule are much better communicators. Must have something to do w/the fact their patients can't speak for themselves!

Best Wishes
BS

I think having a written outline for the meeting is a wonderful idea. I like that I could organize the discussion into ongoing and emerging issues. Thanks for the advice!

[turtle]

Neurological diseases are awful, and the causes are hard to find. You're probably worried about a metastasis to somewhere in the head-neck area. Maybe you have Ménière's disease. It could be encephalitis or neurological degeneration...... So sorry to hear this. I have had a bad neurological disorder (I can't walk!!), and I have been soooooo frustrated with it.

[KElizabeth]

Neurological diseases are awful, and the causes are hard to find. You're probably worried about a metastasis to somewhere in the head-neck area. Maybe you have Ménière's disease. It could be encephalitis or neurological degeneration...... So sorry to hear this. I have had a bad neurological disorder (I can't walk!!), and I have been soooooo frustrated with it.

Turtle,
Thanks for your reply. I see from your signature that you have a lot going on right now too. I also have mets in the lungs and liver.
I really not worried about brain metastasis or neurological degeneration, as I have had normal MRI in the past year. I meniers is ruled out because I don't have vertigo. We looked into Susacs disease, but It's hard to diagnose if you don't have retina damage and there's no real treatment so no point in going further with that. I guess I'll see next month when I see the Neurologist again.

Thanks again.

[rp1954]

Depending on what the hardware and skill limitations are, a therapeutic massage might possibly do something as an empirical trial. I'd ask around.

As for ignoring the chemo possibilities, maybe he doesn't have time, a good answer, or has a conflict of interest.

...a figment of my imagination
I tend to quickly dismiss those that dismiss me.

You could try for some integrative MD or ND support. If not locally, online and conference calls. One of my CRC friends has had good experience with phone consults. Of course, some may stretch their budgets by discussing these consults here or privately to expand on the details, thinking and recommendations. As a practical matter, I don't see getting coverage of the most important therapeutic nutrition aspects from any conventional doctors, the system just doesn't work that way right now.

Several times now, we have experienced overnight results with biochemical "alternative medicine", where conventional doctors had no (satisfactory) answers for hard targets. Slow, technically driven progress we take as a given.