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Posted 10/3/2014 5:32 PM (GMT 0)
I think that was a complete waste of time. confused

First of all I saw a resident, which I wasn't expecting, although I probably should have been.

I have a theory that male doctors freak out when female patients cry in their office and automatically label us hysterical women. I try as hard as I can not to cry but as you all know, this condition is so debilitating that I can't help get emotional when they ask me how it's affecting my life.

He asked me the usual questions but then focused almost completely on my depression. Did not ask questions about physical symptoms. I had to prompt to provide him with that information. He gave me a VERY cursory physical exam. And I mean VERY cursory.

They also have had my imaging for 6 weeks and did not look at it before the appointment. Fine, I get that, but then they told me they need to look at it further. REALLY?You couldn't have done that BEFORE I came in?

I do not need help treating my depression. I have a great psychiatrist.

The attending came in and said that they weren't going to send me anywhere for any more testing and used a whole bunch of fancy language to say I just have habitual pain. He seemed very closed to the idea of investigating physiological causes further.

I feel even more discouraged than I did before I went. They told me to schedule a follow-up in a month but the doctor didn't have any appointments for two months. And a follow-up for WHAT? At least the other doctors I've visited for consults had some ideas about what type of specialist I might need to follow-up with. This guy offered me literally nothing.

I'm sorry this is so long, I'm just crushed.
Posted 10/3/2014 9:26 PM (GMT 0)
BTL,
I couldn't agree with you more about the lack of compassion in male Drs. My first Med. Onc. Was a man and he was as cold a fish as I have ever come across. He also did the " Let's have a look at your chart." Thing every visit. I mean, I saw the guy every month, did he have to take up 5 of my 15 minutes looking at my blood work? I already knew that if I freaked on him he would go over my depression instead of my cancer, he did that the first time I saw him.

Can you get another doc at this teachers college? I know how much you had your hopes set on it. If not that, I guess it's suck it up and go in with your list of questions and just demand they be addressed. I have slim hopes for that as it sure didn't work with my bad Dr. I finally fired him in favor of a female MO, were like best buds, and is know she has my best interests at heart. Once again, I am so sorry that this didn't work out for you . . . Q
Posted 10/3/2014 9:37 PM (GMT 0)
Dear Btl,

It really hurts when you feel kicked to the curb and you know something is wrong and you're in pain. I've been there and am going through something like that again. Every time you see someone new they're starting from scratch, and they treat you as though you are a new patient who's not been treated. I don't want to go to the new doc who's taking over my neurosurgeon's place because he doesn't know me and sent me to phys therapy, which hasn't worked for a year.

How about seeing your PCP again? He at least knows you a little. He can order tests. You might have to guide him gently about what you need and what you've had, maybe with a very brief summary of what's been done. Also make sure you have copies of all tests and reports. Get the CDs. You have a right to them. To get them free say they're for your PCP. You can copy the discs yourself on your computer to save running back and forth.

I won't go to a psy because of the reaction you got. Its hard to get some of these guys to believe there's something physical if they can blame it on something in your head. Of course I'm depressed! I'm in pain!! It's in my neck and back, not my head.
Posted 10/4/2014 1:03 AM (GMT 0)
Freaking a-men Alcie! That was the only thing my neurologist could offer was planting the idea this was all psychosomatic.

A friend today said something to me that felt sort of empowering. I'm going to a university myself in a month, and she said "Remember you are the consumer, if you have to, demand a test". I'm not entirely sure how that will go over, but I am very aware that I can be downright terrifying when I decide that calm rage is a better approach than straightforward discussion. Its your time and your money and your body essentially that you are spending while being there. Woman or not, tears or not, every patient should be treated with respect and not like a hysterical woman.

I certainly would say trying to see a different doctor would be better, and honestly it isn't such a strange or uncommon request to ask for a female doctor.

Prayers and thoughts are with you. I'm so sorry, don't give up.
Posted 10/4/2014 1:17 AM (GMT 0)
Hi Alcie,
That's awful that you got that response from a psychiatrist, ours keeps boxes of tissues all over his office. What, you aren't supposed to get emo over your body turning into a pain factory? . . . Q
Posted 10/4/2014 1:30 AM (GMT 0)
BTL
I am sooo sorry this has happened!! I experienced the same thing with the neurologist. I let his office crying like a baby because he said nothing could be done.
Now you've got me scared that the same thing is going to happen to me (I'm waiting on my referral to a teaching hospital). I really hope that doesn't happen. On top of that, I have to drive almost 4 hours to the teaching hospital and my hubby will have to take off work. And car rides are no fun for me. I think after going through all that physical pain to get there, I might punch someone that tells me its all in my head!!!!!!
Posted 10/4/2014 1:59 AM (GMT 0)
Thanks everyone. CindyLou, don't be discouraged. I think I just drew a short straw on the doc they sent me to. I might try one more there.

Alcie, I was seeing a PCP today to establish care. I have seen two different ones in the past few months and surprisingly, they were both head and shoulders above the guys I saw today. Will definitely be going back to one of them.

Thanks for the encouragement! Keep on plugging away, I guess.
Posted 10/4/2014 2:13 AM (GMT 0)
If they ever call me to make the appt., I will let you know what happens.
Posted 10/4/2014 9:49 AM (GMT 0)
Don't get discouraged,don't canceled follow-up and let's look at what really happens. First you counting on them saving the day,expectation was high and you were emotional. That's OK and remember junkies see Dr's too Thus the reason we rarely get anywhere on first appointment with any Dr and more so with a place that is required by federal mandate to treat you regardless of money, they get a lot of the dregs of the addicted sides of life. You saw a intern passing through rotation your not likely see again and a resident you may or may not see again either and that's due to this team may be "new patients " rotation for the month. Next month they could be different.


Why look at your scan before you show up at the appointment? Many won't and the vast amount of patients he sees he's likely not to remember what it said anyway, better he looks while your there and studying it will likely mean his entire class rotating will get a chance to look at it and remark meaning 8,10,12 new fresh, right out of a decade of anatomy classes are going to scrutinize that scan, not the report!

As for the dwelling on your depression? You bet he is! Simply a fact that it not being controlled and treated any treatment for CP is wasted. The depression is going to trump Whatever methods he uses to treat. Being overly emotional and not being in control of the situation was a good indicator It's not reached a period of treatment that could be construed successful for a CPer. Your mindset has to be stable and believe me I'm not saying it isn't I'm just saying what he nay have seen so he would want to see you a few times to be assured.

Your under the care of other Dr's, treatment has been and continues to be initiated so this was basically a fact finding mission and they are going to do that so what do you feel should have happened that didn't? I'm playing advocate here?

Were you nervous or scared? What caused the emotional meltdown? It's important to have yourself together, know the facts you want to convey, have a pain journal at hand with all that's wrong and how it's being dealt with past and present and what you think needs to happen next. This is your life and you control the outcome using knowledge and advocate for your rights to be treated. Now that doesn't mean we can go I in and demand surgery, narcotics, whatever but it does mean reasonable tests and efforts to discover the cause of your problem .


.Pull yourself together, work on the plan for next visit and what you would like to see happen and remember it takes years for many of us to find a cause and reason and sometimes there just isn't an answer.
Posted 10/4/2014 11:17 AM (GMT 0)
Thanks so much Vicki. You're such a great support. I didn't really even think about the whole "getting to know you" phase, because if I'm not actively involved in the "fact finding" I start to feel like I'm giving in to the pain.

Yes, I was both nervous and scared. My point about the depression was that I see a great psychiatrist and it IS well controlled most of the time. I completely get that it is part and parcel of CP. The resident didn't seem to get that though. I tried to explain how depression and CP are kind of a cycle and it's hard to tell how much the pain is contributing to the depression vs. how much the depression is contributing to the pain.

I'm not trying to be contrary, but to me, "over emotional" is an oxymoron. Emotions are what they are. I don't fight them or hold them down. I've been down that road and it's a dead end. I was not out of control of the situation, just sad as I told the whole "saga" over again for what feels like the millionth time. If a doctor can't handle or is scared off by honest human emotion, I don't think I could work with that person. (Unless it's a surgeon or anesthesiologist, LOL. They should be robots.)

Also, they did make me schedule the follow-up with this particular resident. So, it would be this guy.

What I wanted was to be pointed in a right direction. Other physicians I've seen have had thoughts about it, where to go next, and yes, I had a lot of expectations for this appointment. Not that I'd receive a "diagnosis" or treatment there, but that I'd be given a lead to follow.

The attending dismissed several things I brought up as "red herrings." I told him that I've had increasing weakness, numbness and tingling, hearing loss and balance issues and that my pain levels are fairly high all the time. He said those things were red herrings. He said "I'm not going to send you to a gastro, they'll just give you a colonoscopy". What would be so wrong with that? Every doctor I've seen has suggested a gastro work-up. (Yes, I know, I'm being a baby about that because the word colonoscopy inspires fear in me!)

He definitely 'dismissed' me as a person with habitual pain and he said in a roundabout, fancy language kind of way that there's no other physiological cause of my pain. Now, I've read a lot about that particular subject and I am fully aware that it is possibly true. But in all the literature I've read about it, it stresses how doctors should investigate/eliminate as many other physiological causes as possible. There really was zero interest here in investigating physiological causes.

Vicki I am going to take your advice. Stay the course on this one.

It's just so hard to have to go in to doctor after doctor just to basically be dismissed as crazy.

I will keep on keeping on with them. Vicki you are right about the case conference thing, that is one thing I see as a HUGE advantage here.
Posted 10/4/2014 1:02 PM (GMT 0)
Also - sorry for the two posts - but when I told him I was in pain management, he said that most PM docs are "charlatans". Yeah, I understand there are some bad ones out there, but a) I don't think mine is. he's not doling out scripts by the handful, and b) what, am I supposed to do, a full DEA research project on my doctor? He's treating me well and willing to work with me in what I see as a productive way.

Now if he's over prescribing meds to other patients, I don't know. How would I know?

I suppose it's growing pains over doctors accepting the idea of pain management in general. Maybe as it becomes more prevalent or stays around for longer, or there are newer, medications with lower risk for abuse and redirection, like Butrans and some other new meds.
Posted 10/4/2014 7:13 PM (GMT 0)
I think we are just looking to each dr to helps us down the path we are on. They are not gods but they do have a lot of control of where our journeys go. They are the ones that went to school for this mess not us. We are held at their mercy of intelligence and compassion. To have one to completely dismiss you - well, it would cause me to be "highly emotional" also. (And my depression is very much in check.)

The last dr. (neurologist) basically did that to me. I do agree that that day I went in to his office with very high expectations to "save the day." I definitely did. That was my ignorance and I was crushed. But after I had a good cry, I dismissed him and went back to my primary dr and said, "What's next to do?"

I'm slowly learning to steer this boat I am on. That is something that I have learned within just a few days on this forum. The other thing I've learned is my 7 years of pain is nothing compared to what pain I've seen on here. I feel bad for even complaining.
Posted 10/5/2014 12:56 AM (GMT 0)
smhair  Hey Y'all...I have been kicked to so many curbs by doctors, I think I have a designated SPOT!

I won't go into detail here because it is BEYOND documented in other posts made by me.  I think perhaps you can research those if you would like to read my experience.  I have been EXACTLY where y'all are.  I've literally BEGGED specialists who indeed IMO have a God complex.  It's bad...REALLY bad.  It's not a gender biased thing in that I've had a female ONC/GYN treat me worse than the male doctors. If I had not LIVED my own experiences and documented them throughout my multi-decade struggles, I would not believe them.  My personal treatment by the medical society has been reprehensible. I truly see this epidemic of apathy as a far greater threat than any terrorist group.

I don't make blanket generalizations...there are good nurses, doctors and NPs...but I find them few and far between.  I certainly understand your disappointment in this particular doctor. I just want you to know that you must persevere to FIND the help you need.  It's not right, but it's real...we have to fight for our own survival...to be heard.  I agree with the comment about waiting...only to be dismissed as psychotic.  Often there are doctors who want to put us in that "box".  That's much easier than doing the work of pinpointing our source of pain.  I loved what Lori McD's NP asked her.  It was something like "Do you want to find the cause or do you just want to treat the pain?".  Of course you want to find the cause and eradicate if possible. I traveled 3 states to teaching universities last year to find the cause of pain...Like I said, read my story and you'll recognize the chalk outline of my body on the proverbial "curb".

I have two emotions lately...either sadness or rage.  I RAGE when I think of the way some of us are being treated...or not.  I just want you to know that you are NOT alone.  Every time you feel knocked down...crawl until you can stand back up.  Do not internalize those feelings of angst and desperation until you begin to BELIEVE that your pain is psychological.  It's NOT.

I'm sorry y'all have to go through this to find help=(

HUGS~~Dixie 

Oh...As for potential testing, keep an open mind.  A colonoscopy is no longer such a bad thing, BTL.  The prep is no party, but you have twilight sleep during the procedure.  Just remember that a colonoscopy will only "view" the inside of the colon.  It will not show necessarily what's happening outside the colon wall unless there is stricture of some sort.

    

Posted 10/5/2014 1:04 AM (GMT 0)
Unfortunately I believe that somewhere in the qualifications for MD there's the ability to show your #*%, as my Mom use to say! The next time you see him he may be like a different person. If ever anyone population held a condensed number of bi-polar men it would be the medical field and particularly Dr's as I've not noticed nurses doing it so much! I'm not sure if they act that way because they can or if that type of ppl lean towards medicine. It's like a stereotype they have to live up to, police offers tend to have one as well. Having people's lives in your hands you think?

It's annoying and I spent 30 years working side by side with them!!

It takes us a great many years dealing with all that comes with CP before you can drive your own boat! Lol. You spend y years just drifting and more peddling and sometimes you just jump off the dang thing but then one day it hits you that your just floating and all the peddling has stopped!

This isn't anything anyone of have not felt at one time about our lives. It's especially hard for those of us Mom's, we're fixers, that's what we do! Yet we can do nothing about our own issues? Hard pill to swallow!
Posted 10/5/2014 2:29 AM (GMT 0)
I appreciate your honesty and your encouragement. I really needed this tonight. I've been at the emergency room all day with my 80 yr old father who thought he was having a heart attack. They still aren't sure he had a heart attack. More test need to be done but he is stable thank God. After I got home I had some time of reflection and I was just thinking maybe I should just give up and accept that this is my lot. But Dixie you tell it like it is and gave me a glimmer of hope. Maybe, just maybe if I keep plugging away. I am so glad I found this forum. I have no one that I can talk with about this stuff in detail. Thank you all sooooo much!
Posted 10/5/2014 6:23 AM (GMT 0)
The drs you see at an appointment like this at a teaching hospital are still learning. I know a good dr never stops learning, but that isn't what I'm referring to. It is also a matter of being secure on your knowledge and training. The preceptor should go over the patients from that day with the residents/interns. And possibley give suggestions. You need to go back to your next appointment.
Posted 10/5/2014 1:27 PM (GMT 0)

beachbumcindylou said...
I was just thinking maybe I should just give up and accept that this is my lot. But Dixie you tell it like it is and gave me a glimmer of hope. Maybe, just maybe if I keep plugging away. I am so glad I found this forum. I have no one that I can talk with about this stuff in detail. Thank you all sooooo much!

Cindylou - I posted about that wanting to give up very recently, and everyone pretty much said they had been there, too. I was going to take a few months off from doctors, tests, etc. But I'm deteriorating so rapidly that I can't do that right now.

M&G - Thank you for that information. I will definitely go to the next appointment. I may have some other tests or imaging done before then that I talked about with a different doctor. But, how could that hurt, right? A brain MRI is next to check for MS (recommended by a different GP, who I liked very much).

I was just poking around looking for research on pain treatment and I found a page with this:

<<Your doctor will see you regularly, to look you over and ask you questions about how you feel. If you keep seeing your doctor, new problems will be found right away. Tests are only needed sometimes. Too many tests may cause discomfort and more anxiety. They might even lead to allergic reactions or other problems.>>

I love that. If you keep seeing your doctor, new problems will be found right away! Woo hoo! Doctors are superheros! They all know what to do and will fix you RIGHT up. Yeah.

Also on that page it says "your family doctor will know if you need surgery." Seriously. This is from the American Family Physicians foundation. Uh-huh. SURE.

Post Edited (Backtolife) : 10/5/2014 7:39:33 AM (GMT-6)

Posted 10/5/2014 5:24 PM (GMT 0)
The doctors I saw at teaching universities last Fall were BIG GUN specialists in women's health (specifically).  They were professorial, MDs that were "heads" of their departments.  I spoke personally with 2 of them multiple times prior to my "wild goose chase" of appointments last Fall.  They were all colleagues versed in the treatment of endometriosis...a network, so to speak.  Firstly, they could have coordinated my appointments and tests into one facility, rather than forcing me to see each one individually.  The traveling alone was exhausting.  It was as though, in hindsight, I was the "freak show" on tour...The woman who is 20 years with no ovaries or uterus but "claims" her continued pain is residual stage 4 endometriosis.  I digress=(

Ultimately I'm told it's "probably adhesions" in my abdomen, but we won't touch it.  Seek pain management and a psychologist.  Sound familiar?

Meanwhile, I can't eat, sleep or poop...oh or "see" now with shingles in my eye for 4+ months.  But, hey who needs any of those functions to exist?

Cindy...I'm sorry about your dad.  I hope he gets better.  I understand the stress and heartache of aging/dying parents as well.  My 88 year old mom suffered heart failure and near death diabetic shock/coma in the past year alone.  She thankfully survived, but again I had to fight to get her the help she needed.  The elderly are viewed as a disposable commodity these days.  It's a crying shame.  My mom is one of the most evil and abusive people I have ever known, yet I am in a position where I must not only fight with her, but for her.  I do this ALONE without the support of one of my five siblings.  I digress yet again=(

Y'all stay strong and soldier on until you get answers.  Don't give up...ever.  smilewinkgrin Although my current PM is a certified nut case, I have finally found an amazing new PCP in August.  She HUGGED me several times during our first consult...my point being she treated me like a human.  It felt GOOD to write my former PCP a brief letter stating that although I "appreciated" his assistance, I no longer required his "services".  I don't burn bridges, so I kept it short and sweet.  You can't begin to imagine what I wanted to say to him.  My new PCP gladly wrote my maintenance scripts w/5 refills.  She also assured me than when my current PM establishes a successful protocol with meds, SHE will write them.  She is not only a family physician, but a general surgeon and administrator of a nearby rural hospital.  What a BLESSING!?!  So...I am living proof that you must fight the good fight.

Hugs of Healing Hope~~Dixie

Posted 10/5/2014 5:37 PM (GMT 0)
Another thing you might want to do is look up the hospital's rankings in the specialties. Especially in the specialties you think you might need. Just like a regular Dr's office/practice-you have good and bad. I drive 3 hrs for many of my appointments, instead of a University hospital nearby, because of the quality of care. I have established a great care team down at Duke. Some of my specialties I need are not as highly ranked as some of the others, but the overall hospital is great. My team tries to cluster appointments so I don't have to drive down for every individual Dr. They also email and text me to let me know the plan, and I can do the same to them if I have issues or a problem.
US News and World Report compiles a list each year. Here's what my hospital ranks.


This hospital was among 144 facilities—roughly 3 percent of the 4,743 analyzed for the latest Best Hospitals rankings—to be ranked in even one of the 16 specialties.

Nationally Ranked
#22 in Cancer #4 in Cardiology & Heart Surgery #21 in Diabetes & Endocrinology #49 in Gastroenterology & GI Surgery #23 in Geriatrics #28 in Gynecology #9 in Nephrology
#27 in Neurology & Neurosurgery #6 in Ophthalmology #9 in Orthopedics #5 in Pulmonology #12 in Rheumatology #7 in Urology

So. overall, Duke ranks among the top 3% in the country. I see GI, Neuo, Ophthalmology, Pulmonology, Cardiology, and Rheumatology.

A high national rank my not guarantee a good appointment, but you can also look up patient satisfaction as well. I know 3hrs is far to drive, but those Drs have literally saved my life, and more than once. I don't think you can travel to far for good patient care. I am very blessed to have a great circle of friends to help me with the driving.

I hope you can get a good dr so you can finally get some relief.
Posted 10/5/2014 10:04 PM (GMT 0)
Maybe there is something to the female doctor thing. So far I've seen only male doctors. I didn't even think about how that would make a difference.

When I went to schedule my follow-up, they mentioned that I could get in with a different resident. I'm going to call back and see if there's a female I can see.
Posted 10/6/2014 2:32 AM (GMT 0)
Backtolife,
You commented on my post so now I am trying to read through your posts to understand your situation. I do see that you are very frustrated with the unknown of not having doctors be able to explain your pain and perhaps getting the we-can't-do-anything-for-you blow off. I am sorry you are going through this, I have been there too, and it is my situation with a failed L5/S1 surgey by a hack and also due to doctors blowing me off so long I have three permanently damaged nerves in my left leg. But keep seeing different doctors if you can and get some help, or at least some answers. You are bound to find one. Eventually I found both a great PM and neurosurgeon. I have been to so many doctors over the years. And even my recent surgery perhaps could have been not so major had I been treated correctly way back when.
Andain meds affect each of us differently so keep trying various ones and also know that initially you may not feel so well, but after some time you can get used to side effects. Although watch those that make your depression worse. My ❤️ Goes out to you..
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