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I am frustrated. I just returned from a trip to Mayo. Overall, this trip was good in the sense I learned more but I'm still disappointed.

I think what is most upsetting to me right now is the cardiologist I saw. On one hand he seems to understand some things and on the other hand he wasn't listening to me.

I told him that sometimes if my heart has been racing for a long time I get chest pain. We've discovered over time and through trial and error that oxygen makes the chest pain go away when I'm like that. He looked at me with this smirk on his face and said, "I don't believe that. I don't believe oxygen helps you. I believe it's a placebo effect". I wanted to smack him!! Where do these Dr's learn such arrogance???? :huh::):angry:

I do understand there is such a thing as placebo effect. It tends to be with people who are endorphin responders and when they think they are getting a medication their brain releases endorphins which help them feel better. Placebo effect is a "real" not imagined effect. However, I am NOT an endorphin responder (unfortunately) and if I had the placeo effect going on then I should also be feeling much better every time I take a pill and believe it's going to help. That would actually be very nice but it's not the case. Not to mention, we found that the oxygen helps by "mistake". So....because he believes it's a placebo effect and doesn't believe it's truly helping me then he won't recommend my Dr to order it for me when I need it. :angry:

Between that and him saying, "Well you have a disorder that can be very disabling but we don't have anything more to offer you" --he was so cold, arrogant and calus about it. I would have been much better if he had just been sympathetic and compassionate about it. This "Well you won't die attitude" toward this is NOT helpful when it has destroyed my life as I knew it!!! Luckily the Neurologist is understanding and has excellent bedside manner.

I'm just disappointed and feeling hopeless in the moment. I'm tired of being sick all the time and not feeling good day in and day out!!!!!!

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Hi Poohbear,

Firstly , responding to one of my all time favourite characters / kids too - just brings a twinkle to my eye every time I say the name - its a Blustery Day. To be serious , My two extende trips to the Mayo had this very same Rollercoaster Effect. Luckily my Endocrinologist was/is FORMIDABLE' , just excellent - both in medical terms and bedside manner. He was able to dispell all occasion were I had any misgivings with other speacilists. In fact it tended that mine were also his. We would talk at length about why the misinterpretations existed. His explaintion was that each case presented its own unique problems and that Drs certainly aren't above egocentric behavior. It is also not uncommon for a Doc not to wantto go out on a limb - educated guess - without imperical support - which is tough with Dysautonomia related disorders - Symptoms be ******. Don't be dis mayed by one Doc. The Mayo and Facilities like it are still the leading edge for RESEARCH , however , it is US that will allow this research to move forward. Our persitance , resilance , patience and personal research/stories. Its really the Baseline of their info. So Poohbear don't be disheartened , just going made a difference for those who will follow you. You know what's happenning , keep working to find your answers and along that path WILL be the right Doctors - maybe at the Mayo.

TTFN Kite 7

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Poohbear,

What Mayo did you go to? I went to the one in Jacksonville last Sept. and I thought the cardio there was awesome. Very understanding, knowledgable and sympathetic. He didn't even charge me for the visit! I did NOT like the neuro I saw there though. He was arrogant just like your cardio was. I am sorry you had a bad experience. Did you see any other docs besides a cardio? It's frustrating to spend all that money and be treated so disrepectfully. I hope you were able to come away with at least some other answers via testing, etc.

Gena

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poorbear..

i am so very sorry about your bad experience at mayo with that cardio. What a horses A**!

what i did want to tell you though, I that I believe that oxygen does help a pots patient feel better. I have been put on O2 a few times while haivng an IV done, and I didnt really noitce a difference with the IV, but once they gave me oxygen, I started to feel better, my head felt clearer, and they crazy floaters and visual disturbances went away.

I have mentioned this to several people in the meidcal community, and I was told that there is no research that supports oxygen help pots patients. I'm like I am a pots patient and I am telling you that it helps.

I was also told by my, dr.'s assistant, that you are so young, you cant be dependent on OXygen. And blah blah blah!!!

The medical community frustrates me at tmes!!!

ANyways, I am sorry that you had a bad experience!

Linda

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Hi

Sorry about your experience with the cardio. We could fill volumes. But it's not only with POTS being a lesser-known disease, even in more known diseases like MS patients could write reams about horrible bedside manner (and I'm sure can also write a lot about some compassionate doctors as well).

Interesting you mentioned the oxygen. About a year before my diagnosis (it took a long time for them to figure this one out) I went to the ER because of what I now recognize as stuff that accompanies the POTS. Among other things, my feet were burning. I went by ambulance, they gave me O2 on the way, and by the time I arrived i felt better. Of course since I was able to touch my finger to my nose, the ER doc said there's nothing wrong with me. But in retrospect I think the oxygen definitely helped.

ariella

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This is a post I can REALLY relate to right now. I just returned from May o Rochester with the same feelings.

I am so very sorry you didnt get what you were hoping for there. I found many of the specialists had the attitude you described.

All I can tell you is what I am trying to do, which is be happy I went b/c had I not gone I would have always thought "what if".....

Now you know ...you have gone, done your best, but they were not the ones to help..

On to the next.... I have realized that there is always a "next"..... Unfortuately there are lots of stupid dr's and a handful of caring ones that really want to help out there. They handful are hard to find.....we have to really do some digging ... and in the process will run into the ones that just dont get it.

Hang in there,,,,, I know it makes us feel so invalidated when we have a dR not believe us... But know that this Dr did not have the proper knowledge or personality to help you...

You know your body the best and you know what helps..... That is what is important.

Take Care of yourself , I'm sending you Lots of hugs :)

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I am just a lowly firefighter and O2 has not helped me during my rides to the hospital in the gutbox but I can see how it can help someone with pots problems. When you think of it a lot of pots symptoms come as a result of not enough blood getting to our organs such as the brain. when we increase the amount of oxygen in our blood it means that what blood gets to our organs is able to do a better job oxygenating them thus making them function better. I felt better after my last tilt test when I passed out and got an iv. I had the crazy idea that if you take nitro to dialate the blood vessels and then added an iv solution to fill the veins it would help. That didn't fly because there was no research to back that up.

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Sorry you had such a bad experience. When I had full-blown POTS with horrible chest pain and shortness of breath (POTS that was undiagnosed) I was in such a sorry state that I was put on oxygen and IV's in the emergency room and it did help!

When the medical community has nothing to offer I notice that it is often easier to attack the messenger than the message. I don't know why they can't be more empathetic even if they can't offer you anything. I believe they don't want you coming back if they have nothing to offer. I agree that Mayo is more of a diagnostic and research facility.

I think a little exercise over time has had the most positive impact on me. That being said I know I couldn't have attempted much the first year and it is hard to get started with even the simplest activites initially. Have a better day tomorrow! Martha

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Pooh, please don't forget that doctors, in the end, are just humans like the rest of us, with all the frailties of the rest of humanity. Doctor's aren't born with any special skills in empathy or compassion--in fact, in order to survive their profession, many shut that part of themselves off. I've said this before, but you should consider those compassionate physicians to be gifts to you; they don't come often. Also, in my opinion, many physicians aren't very good at saying "I don't know what to do for you.", or just plain old "I don't know."

Try not to let the cardiologists words take away your feelings of self-knowledge about your body, or your feelings of competence when it comes to understanding your illness--he is but one person, and it sounds like it's not a person you'll have much contact with again.

Nina

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i have my own O2 tank at home and it helps me so much i could never live without it, it helps so many symptoms, tachy, fog, lightedness, out of breath, its a lifesaver for me, so yes it definately helps!! sorry you had a such a bad experience, some doctors can be so hurtful,

radha

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Thanks to everyone for your replies and support :rolleyes:

I do know that Dr's are human. What frustrates me is how difficult it is to find the good Dr's. Again, overall, my experience at Mayo Clinic in FL has been positive and MOST of those Dr's have been much better than the average at listening and understanding.

It is difficult however, to deal with Dr's who refuse to help you simply because THEY don't understand. For example, in this case, what harm would it have done for the cardiologist to say it was o.k. for me to use oxygen the few times a year when I go get severe chest pain? Even if he was correct about the placebo effect (and in this case he's not)....what harm would it do for him to prescribe the oxygen? The reality is, regardless of the cause, oxygen helps. By him writing in my record that it won't help and he doesn't recommend it's use I won't be able to get my local Dr's to order it (because they think Mayo Dr's are God's who know everything) and my insurance company does the same and won't pay. I get comments like, "Well, the mayo clinic didn't recommend this so we aren't going to pay". THAT is what frustrates me...is the fact that this hurts me even more in the end.

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