In All Fairness

[Maxine]

Any good medical stories?

I will share a couple, but need to get to bed, so I'll post tomorrow.

Maxine :0)

[sandymbme]

My soon-to-be-former PCP is/was wonderful. She did her absolute best at trying to keep me in one piece for the ten years I was uninsured. She even returned a call once on Christmas day to her messaging service at about 10:00pm. She did her best to manage me on a shoestring budget, and was wise enough to recognize when she was out of her depth.

Unfortunately her caseload (she sees primarily medicare/caid patients) is so heavy that she does not have the ability to co-ordinate care. But at least she had the honesty to tell me this, and gave me questions I should ask in my PCP search. I am just keeping my fingers crossed that I can find a new PCP with half as much integrity!

[Maxine]

Thanks for sharing Sandyshell.

I know some of my posts reflect a lot of bitterness from bad experiences. However, I have had some good doctors take care of me. Everyone knows Dr. Grubb is one of the best and most sincere doctors. He is the one that diagnosed my POTS, and he's been very good to me.

My EDS doctor/geneticist is exceptional, and he will take the time to answer questions via e-mail.

My orthopedic surgeon is great, and is doing a good job in carefully watching my CCI.

My experience at the EDS study at NIH was great, and the doctor heading the study was very down to earth, and very kind.

She is one of the top researchers on connective tissue disorders, and also very knowledgeable of the effects it has on the body.

I had a good neurosurgeon who was the first to find out how severe my spine problems were. He did surgery on two herniated disks that were pressing so hard on my cervical spinal cord, that I had only less then 5mm of the space needed for my spine----and this is far from normal. The surgical report stated that there was a dent remaining even after the herniated disks were removed. High doses of steroids were used for the swelling. If I would have listened to the first neurosurgeon I saw, I don't know where I would be today. The NSG that did my surgery also found other things wrong with my upper spine, and lower cranium. He got the ball rolling, that eventually lead me to the EDS diagnosis-----which is the reason my spine is in the shape it's in.

Although I have had a very difficult time with some doctors taking my health problems seriously, I know it doesn't compare to some of the very difficult times others have had.

Sharing good stories can help us build a network of knowledgable health care professionals, who are not already listed here on this web site.

Maxine :0)

[bjt22]

In all fairness, I've been very lucky, compared to many. Saying that there is some discrimination out there isn't being overly critical...we know that it exists in every sector of society, so saying that sometimes we might feel that we're on the receptive end of it from the medical community isn't being overly negative, its just stating a fact. As to the challenges that exist in healthcare today, well, first we have to acknowledge that these problems exist...we can't expect to have them solved otherwise.

As I said, in most ways, I've been very lucky...I've never had a single doctor doubt that there was something physical wrong with me. In fact, there were times, over the years, in which I actually resisted hearing them. When the time came in which I was very ill and didn't know what was happening to me, I received respectful and decent care at an ER, and my family doctor, while not totally understanding the condition, knew enough to refer me on and to do it quickly. I was actually given a diagnosis within a week or so of showing up in the emergency room. While I sometimes still get a little frustrated with my own situation, I think my doctors mean well, they just don't always know what more to do and often, like all normal people, they don't like saying "there's little or nothing more that I can do". That's fair...and when I make suggestions, they always are willing to comply. I just wish I didn't often feel as if they've given up or written me off...but, on the other hand, I can appreciate their not filling me with false hope or worse still, using me as some kind of experimental case.

[Maxine]

Well said bit22.

I posted this to try to get some positive feedback because I don't want to be thought of as a negative person, but also curious of good stories, and I'm glad to see you had good experiences. The other thread I started on the opinions on medical treatment thread was because I have witnessed predjudice over and over again in the medical community towards patients.

It just seems that we don't really see a lot of positive stories verses negative. We can learn from both though.

If more people stand up to doctors, maybe we'll hear more positive stories because docs, and other medical professionals will realize they can't get away with this.

It's also good to know which doctors to avoid.

Maxine :0)

[ironsc]

Heylo,

I'll keep this a short (but sweet) story for now.

Back in February of this year, when I had a massive flare-up of my undiagnosed POTS, and then was hit with Influenza Type A, I went to see my completely new doctor at the college campus hospital. I was nervous as heck when I first started seeing her, because of the negative experiences I had with my PCP during childhood. But she turned out to be the best doctor I've ever had, in the end.

She was very caring, listened, and actually included me in the dialog of trying to find out what's going on. She actively engaged me in the discussions, thought out loud in case I wanted to add something, and took everything I said without one shred of disbelief. While she didn't know exactly the problem, as she's only a PCP and not trained in any depth of one subject (more of a jack of all trades), she did a perfect job for a PCP - identified where the problem might be coming from, and sent me to that specialist for a closer look. But one of her more angelic qualities has to be the fact that she will not let me walk out of that room without a smile on both our faces.

There's a program at this hospital called "Caring is Contagious" - I filled out the form with multiple accounts of her desire to go above and beyond for the patient. The form said she'll get an recognition and award, which is the least that she deserves for her compassion. I make certain to thank her frequently for her help, and to know she made a difference in this person's life.

Cam

[momofsara]

Maxine--

Sara has had a few good doctors, right now her PCP is wonderful, so understanding and actually knows about dysautonomia and doesnt tell her its all in her head and she needs to get up and just get over it and quit being a "drama queen".. The neuro she had in the beginning was terrific, such a caring and inquisitive person. She was NOT giving up until we had some answers. Unfortunately she moved several hours away and its now impossible to continue to see her. Also Sara has a wonderful urologist, the typical older, grandfatherly type. Her pain management doctor has educated herself on dysautonomia and now her office actually accomodates Sara in making her visits more comfortable. Anyway, thats our story and we are sticking to it !!!!! LOL Best to all Susan

[bjt22]

Well said bit22.

I posted this to try to get some positive feedback because I don't want to be thought of as a negative person, but also curious of good stories, and I'm glad to see you had good experiences. The other thread I started on the opinions on medical treatment thread was because I have witnessed predjudice over and over again in the medical community towards patients.

It just seems that we don't really see a lot of positive stories verses negative. We can learn from both though.

If more people stand up to doctors, maybe we'll hear more positive stories because docs, and other medical professionals will realize they can't get away with this.

It's also good to know which doctors to avoid.

Maxine :0)

I don't think we can categorize many things in life as either totally "negative" or "positive". I also don't think we can separate out the medical community from the overall society that it is just a part of. It's going to be reflective...therefore, we can almost bet that some prejudices will emerge when we access care. Being aware of that possibility and recognizing it when it occurs is just being ahead of the game. To pretend that there are never any problems is not a very democratic way to proceed...in fact, I think we all have a responsibility to acknowledge these areas so that we can work towards improvement.

Most of us here are women. We know, for a fact, that there are many areas in which we are on the receiving end of certain discriminatory treatment based on stereotyping. The trend in the past half century has been to "medicalize" being female...we've turned normal biology into a disease state. Menstruation, pregnancy, childbirth, menopause, etc., have come to be viewed as medical events that need to be managed. When this type of thinking exists, its no wonder that often, our health problems are viewed through that prism and are just written off as being "female troubles". By being aware that this happens, we can advocate for our own care to make sure we don't fall through the cracks.

Likewise, we live in a society that increasingly values "productiveness". This is where we get into class issues....a more "productive" person is much more likely to be seen in the kind of positive way that will enable him/her to get better care to maintain that level of "productivity". We've allowed society to use the notion of increased productivity to justify medical care. Is it any wonder that this attitude shows up in the medical community? I think it would be odd if it wasn't reflected there as it is in every other sector of society. When we start viewing our fellow human beings rather than as units of productivity, I have little doubt this would be reflected back in the medical community as well.

[Maxine]

Momofsara, and Cameron,

I'm glad to see you had good experiences, and docs you can count on. Too bad the older kindly doctors aren't going to be in practice much longer as they reach retirement age.

In regards to the predjudice----------(the medical field can't afford to have a person's health care compromised because of a doctor's shallowness).

I'd like to hear of good medical care for people that are not so skinny, lower income, poor insurance, and lower eduation.

I know it's not only these people who have poor medical care, but there is an existing prejudice-----even from what some folks feel are the best docs--------(they can be guilty of this too).

Keep the good stories coming, and maybe share the names and locations of these doctors privately via e-mail, so others may benefit from the same god care your getting. Especially if you feel these docs treat all types of people with the same respect and compassionate medical care.

Maxine :0)

[juliegee]

I hate to say this (because so many are still looking for their perfect fit!)but my son has the BEST doctor in the world. After missing almost an entire year of school at age 12, and being unable to eat almost anything, and fainting throughout the day; we finally made the journey to Johns Hopkins. All of the local docs had referred Mack on, until we got to a pediatric gastroenterologist in Atlanta. He performed many tests, prescribed lots of meds, and when Mack failed to get well, he concluded that he was mentally ill. I was furious and so scared. I knew my son was sick, not psycho! A wonderful pediatric GI motility specialist, Dr. Anil Darbari at Hopkins, (there are few in the country) DXed him with small intestine dysmotility SECONDARY to his automonic dysfunction. And, then, Mack was referred to Dr. Peter Rowe. It took over a year to get to him, and only an in-house referral will do the trick, as he's accepting no new patients. But, he was worth the wait. Our first visit was an hour in length over the phone. We regularly E-mail, usually me with questions and new symptoms. Dr. Rowe usually answers on the same day. What doctor does that??? He never even billed us or charged us anything. We finally met after he'd been treating Mack for a year. Our in-person visit was several hours long. He was so careful to ensure that Mack knew he was sick, not mentally ill. He was so kind, concerned, and so thorough. We haven't seen him for a few years, but as new symptoms arise, he switches/adds/subtracts meds. I just show the E-mail to my local ped, who writes the prescriptions.

Even though Dr. Rowe is a pediatrician, he's vicariously helped me realize that I was suffering (to a lesser degree, usually) from the same things Mack is. He's helped us connect the autonomic stuff to a possible connective tissue disease (waiting on blood work to confirm) and possibly a mast cell disorder as well. Dr. Rowe recommends local geneticist, PT's, etc. and always promptly writes letters of referral or whatever we need.

He is the BEST doctor ever. I will be devestated when my son turns 18 y/o. We will be bereft without him.

Julie

[summer]

post deleted by summer

[nunibenuni]

My pediatrician is great. She is always the first person to admit it when she feels like there is nothing more that she can do, but she can always say which specialist I should go to. Many times, she calls the specialist while I'm in her office to discuss what she can do. She also wrote to the mayo clinic so that they would see me. When I was diagnosed with POTS, she admitted that she had never heard of it, but she asked more about it and researched it.

I've been lucky with all my doctors. I have not had any horrible experiences. So there is hope out there!

[taylortotmom]

Once again, I have to give accolades to my cardiologist. He is the one who diagnosed me nearly six years ago. In fact, I now travel six hours to see him- he is that good. The thing about him is he took the time to LEARN about dysautonomia(in fact he has some autonomic dysfunction himself) and has tried some non-conventional treatments with me. At one point I was on daily iv therapy (at home) which back then was just really starting to be used to that degree. After trying different treatments for a year or so, he ordered a pacemaker for me. Again, back then (we're talking just a few years ago- this is how much things have changed) that was an aggressive treatment. He has consistently pushed the envelope- not in a risk taking way but in a way that let me know he was willing to think outside of the box. He pushed me to apply for disability back then (I won), he just went over and beyond. Right now, I am enjoying a very good spell- knock on wood. But I will forever be indebted to my cardiologist- when I was at my absolute worst he never gave up on me and is still right there for me. He is awesome

Carmen