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Does Your Local Doctor Understand Your Condition?




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52 replies to this topic

Poll: Does your local doctor understand your condition? (113 member(s) have cast votes)

Does your local doctor understand your condition?

  1. Yes, they are excellent, and understand my condition. (26 votes [23.01%])

    Percentage of vote: 23.01%

  2. They are good, but could do with reading a book on spinal cord injuries. (26 votes [23.01%])

    Percentage of vote: 23.01%

  3. They don't understand issues regarding spinal cord injuries, but are willing to learn. (19 votes [16.81%])

    Percentage of vote: 16.81%

  4. They don't have a clue, and just pass me onto someone else. (29 votes [25.66%])

    Percentage of vote: 25.66%

  5. I don't use my doctor for issues regarding spinal cord injuries, I contact my Spinal Cord Injury Unit/Center. (13 votes [11.50%])

    Percentage of vote: 11.50%

Vote Guests cannot vote

#31 ClaraTaylor

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Posted 10 November 2010 - 01:09 PM

Whatever the problem they want to prescribe me laxatives.
I think they are of the opinion that taking them will at least keep me away from their door.

#32 Angela250153

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Posted 10 November 2010 - 02:33 PM

As a matter of interest, has anyone given their GP the web address for Apparelyzed ? ......... and if so did your GP make the effort took at it?


In the last couple of years the GP's in my surgery have changed and these younger ones are much more interested and try to understand SCI.

I had accupuncture from one of them the last few weeks and she told me that she had never come across an incomplete SCI walker. I told her about this site on the first visit and she has told me that she looked around the site and read post and info and found it very useful.

#33 greybeard

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Posted 10 November 2010 - 05:27 PM

Whatever the problem they want to prescribe me laxatives.
I think they are of the opinion that taking them will at least keep me away from their door.


What's the address? We can't have them implying that someone like you is full of shit. I'll send the boys round. That'll fettle'em.

"Do not go gentle into that good night, Old age should burn and rave at close of day;  Rage, rage against the dying of the light" 

[Dylan Thomas]


#34 smiley86

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Posted 10 November 2010 - 11:52 PM

My family doctor was a little behind on all the issues. But I give her a ton of credit as she is honest about what she doesn't know and has made a great effort to learn.

#35 Gunnslinger8

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Posted 25 January 2012 - 07:17 AM

I am VERY FORTUNATE to have found an EXCELLENT Docter that listens (Absorbs what I'm saying) to my concerns. It took around four tries to find the right one, I've learned through time NEVER set a return visit to a physician that does not greet you with a hello or handshake. Most doctors treat you like cattle, they want you in and out ASAP.

He treats me with respect and is funny as hell. I'm seen almost as soon as I arrive, his waiting room is always jam packed and most have to wait, maybe it's because they understand I have transportation issues. His staff always very courteous and friendly. I noticed the employees that have an off putting demeanor don't last long. The last thing you want when you're in pain and in a waiting room full of others that are in the same predicament is poor treatment.

I remember one visit where I was his last patient of that day, and I was waiting for my transportation to arrive, they were running late, he sat with me around a half hour, fourty five minutes and we had a conversation about my life and other crap. I knew at that time he would be my permanent physician. He also always asks about my mental health and makes sure I'm not headed towards crazyville. I hear many other SCI members that are unhappy with their visits, being treated like a drug seeker, not receiving the adequate amount of meds for condition etc. It's too bad there are not more like my Doc.
Yous can't moves forward if yous keep looking back...Unless yous doin the moonwalk. GS8

#36 A trophy guy

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Posted 25 January 2012 - 07:25 AM

Absolutely not. Ha! I mean, my physiatrist doesn't understand my condition!



THE DUELING DUNCES-which doc can be King?

:swordfight:

Blessed but Cursed


#37 catmint

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Posted 25 January 2012 - 08:21 AM

Our GP understands..but only up to a point.

At the moment my husband has had damage caused by an incompetent PA. The GP wanted to refer him to our local hospital to see a surgeon. GP sees no problem with this, after all it is a very well respected hospital. However we have had experience of the horror of him
being in there with staff who are experts in their field but have no idea about SCI.

So we are going to the Spinal Unit and hopefully any surgery will be done there.

#38 Tetracyclone

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Posted 25 January 2012 - 02:04 PM

My GP is so pressed for time he does not choose to learn. he refers me to a Physiatrist who uses his knowledge of strokes, and a urologist who is good but has no experience with SCI, and his nurse knows NOTHING of cathing. Fortunately they all listen to what I learn from apparelyzed.

My rehab guy in Taiwan was fabulous.

#39 HiltonP

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Posted 25 January 2012 - 02:15 PM


As a matter of interest, has anyone given their GP the web address for Apparelyzed ? ......... and if so did your GP make the effort took at it?


Believe it or not: Before reading this, I just wanted to write the same. True.

How hard can it be to read around this forum - if this is part of your JOB? Obviously, there are books on the subject, too. I find this lack of interest and of sense of responsibility appalling. Even IF a doctor didn't know anything much before having SCI patients (bad enough, in fact!) - how about getting informed WHEN they actually have one (or more)? Can't you insist your GP gets informed? In a polite but firm way? It's your right.

Is it a right Monika?
Or is it more a privilege to have a doctor who shares an interest in one's condition?

GB's question almost had me spilling my coffee all over the keyboard!..... if I was to give this link to my GP she would probably fall on the floor howling with laughter and ask me just how much I was prepared to pay her to spend time browsing the Internet when she could be charging people prime rates for 10 minute consultations? I am afraid my opinion of the medical profession places them at about the same level as lawyers and accountants, and that level is dark and cold and worthless......
  • A trophy guy likes this

#40 KayDub

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Posted 25 January 2012 - 06:38 PM

I voted for they don't have a clue but refer me to someone else. My GP is a wonderful woman who means well and is generally very good when it comes to GP issues. I came in with strange pains in my sternum, unrelated to my SCI, and she ran thorough tests and did not blow me off. It ended up being a muscle injury but I was thankful she looked at any possible heart issues. However, when it comes to issues related to my SCI, she's pretty clueless and passes me onto other specialists. I don't think it's not that she wouldn't "read a book on SCI" or do something else to further her knowledge, I think it's more of an issue that she doesn't want to put my health at risk just because she's not well versed in SCI. I'm also lucky that I see my GP in Denver where Craig is and there are many other specialists in SCI and other areas, that can help me. I live about 2 hours from Denver on the other side of the mountains, but continue to see doctors there because there are almost no doctors that take my insurance in the ski town where I live, let alone any specialists for SCI or other issues I have. I'm lucky my mom lives in the Denver area and has since my parents split in high school, so I've been able to have better access to good health care!

#41 Zack

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Posted 29 January 2012 - 06:04 AM

My Veterans administration Dr is a Neurologist who understands my condition, although working for the Gov has her hands tired with Gov Red tape and the VA budget. She's afraid to even sign a piece of paper needed to allow me to go to a VA hospital that could treat my bladder stones 2 years ago. It took me fighting with her and her Boss over getting that paper signed from July to October, with each saying it the others responsibility!
I contacted the Chief of Staff who said either of them can sign it, yet neither would. So leaving the hospital that day I was going to give up and contact a News station for help, I saw an American born looking Dr near the ER and ask him what do I have to do to get this paper signed? Without asking Me for any VA card or anything at all, he looked at the paper and signed it. that left Me with a very distasteful anger over foreign doctors working at the VA. I feel like they're all born in countries that at one time the US was at War with and they're getting revenge for our Fathers and Grand Fathers having defeated theirs!

My local private Dr I haven't seen more then twice a year, the 6 years She's been prescribing me *anything* I ask for!!! she sends her physians assistant weekly to take my vital signs and had me a Script for Any Narcotic, Antibiotic I ask for!

Her words the first time we met still ring in my ears. "you've been paralyzed a lot longer then I've been a Dr, and seem to know your needs very well," She prescribed a muscle relaxer for my strained neck, and asked do I need anything else? "Yes, I need a script for Viagra, and something strong for pain, the VA won't. Give out patients narcotic pain Meds!" she gave me acript for Viagra, and for 5 mg of Oxycodone that over the years has increased to 15 mg Oxycodone 4 times a day and 5 mg of Vicodin 4 times a day if the 15 mg Oxycodone isn't enough.

I'm My own Doctor!
Dr Zack OBGYN aka Mr Mamogram. :)
~Kill them with Kindness~

#42 Cathelena

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Posted 29 January 2012 - 04:35 PM

My GP tries his best but readily admits he is "totally out of his comfort zone" with anythng to do wit sci

#43 Iain

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Posted 29 January 2012 - 08:10 PM

My GP tries his best but readily admits he is "totally out of his comfort zone" with anythng to do wit sci


I worked as a GP for 25+ years and the first person with SCI that I had any real dealings with was me!

#44 greybeard

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Posted 29 January 2012 - 09:58 PM


My GP tries his best but readily admits he is "totally out of his comfort zone" with anythng to do wit sci


I worked as a GP for 25+ years and the first person with SCI that I had any real dealings with was me!


I bet that was a steep learning curve. Posted Image

"Do not go gentle into that good night, Old age should burn and rave at close of day;  Rage, rage against the dying of the light" 

[Dylan Thomas]


#45 Iain

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Posted 08 February 2012 - 09:08 PM



My GP tries his best but readily admits he is "totally out of his comfort zone" with anythng to do wit sci


I worked as a GP for 25+ years and the first person with SCI that I had any real dealings with was me!


I bet that was a steep learning curve. Posted Image


Yep but what was just as amusing was that I ended up advising the junior doctors on the ward how best to treat things like ear infections and identify rashes on the staff, which with mainly orthopaedic backgrounds they were a little lost!

#46 DannyR

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Posted 09 February 2012 - 02:11 AM

I see a different doctor for things related to SCI. I do see her on a regular basis not just when there is a problem. I am only seeing her every 6 months now but I am comfortable with her. Sad thing is she is going to retire and soon. As soon as she has a replacement. I fell into an old creekbed my first time out deerhunting after my injury. It was a pretty good fall and I went to see her because I was having problems...the next day she called me to check on me and the day after her nurse called. In todays world it is hard to find a doctor who cares enough to pick a phone and call you.

#47 rollingtrouble

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Posted 09 February 2012 - 03:27 AM

I am very fortunate to have my primary care doctor at the VA Audie Murphy SCI clinic in San Antonio, he is a para and rolls around in a wheelchair too. He is an excellent doctor and a strong advocate of all us crips there. :)
Holy crip I'm a crapple!!!

#48 pistol_pete

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Posted 09 February 2012 - 08:18 AM

I am very fortunate to have my primary care doctor at the VA Audie Murphy SCI clinic in San Antonio, he is a para and rolls around in a wheelchair too. He is an excellent doctor and a strong advocate of all us crips there. :)

I went along to my clinic about two years ago, i was sitting in the waiting area and in rolls this chick in a wheelchair, turns out shes one of the new GP's and my new best friend.
It was bloody great having a doctor who knew exactly what you're going through.
Unfortunately she buggered off to another clinic. I can still go and see her if I want, it's just an extra 40 km drive. I usually go and see her if I have a problem that is SCI specific otherwise I take pot luck with whoever they put me with at the local clinic
Todays greatest labour saving device is tomorrow
My spine is all wrong but my backbone is strong.

#49 Edinburgh Colin

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Posted 09 February 2012 - 08:58 AM

Funily enough my GP has learned quite a lot from me over the last 2 years but yesterday when I was discussing with her the next step in trying to deal with my stubborn wound on my thigh she admitted she was "flummoxed" and "had no idea what to advise me or where to go next". So having done some research myself and information gleaned from here I told her what we should do, including getting a referral to a plastic surgeon who are the wisest folks here about open flesh and treating wounds.
She wrote the letter for me and prescribed the anti-b's I wanted so we have a good relationship!
EC
Impossible only describes a problem that needs viewed from a different perspective

#50 brockit79

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Posted 09 February 2012 - 09:16 AM

my G.P since moving to my new home have been pretty good really. They don't really have many, if any, SCI'd which is obvious; but we talk about issues sensibly and they consider my requests/opinions seriously. They have also sent medical students to me to use my details as a case study.
We have proper discussion about what to do next with various issues. I believe that we can't expect G.P's to know everything about everything and seeing as we (SCI'd) seem to be a relatively small population they will not be exposed to SCI all that often, but showing an interest to learn about things is the marking of a decent G.P in my boook.

I have had 4 different G.P's since being discharged from hospital and 2 have been good as described above and 2 that were totally not interested and showed no interest in my condition.

Edited by brockit79, 09 February 2012 - 10:51 AM.

Neek me chawa, wermo, mo killie ma klounkee!

#51 HiltonP

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Posted 09 February 2012 - 09:55 AM

...the next day she called me to check on me and the day after her nurse called. In todays world it is hard to find a doctor who cares enough to pick a phone and call you.

Hang on to her!
She is worth her weight in gold!

In over 34 years of seeing doctors (excluding the other 16 years as a child/teenager) and during that time having undergone some quite serious medical procedures instigated by my doctor, I have never once received a telephone call from my doctor to enquire about the state of my health or the after-effects of the medical procedures. Not one call..... B)

#52 lonebobseytwin

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Posted 06 May 2012 - 08:22 AM

It took me over 2 years to get a diagnosis, I was pass around by hospitals, neuros, orthos the whole schabang. Most general doctors don't have a clue, but they don't really handle my sci stuff anyways. I go to my fantastic pain care doc. for that, he's the one that figured it out. The only other doctor that deals with sci stuff is my cardiologist for my low blood pressure meds.

#53 ksheja

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Posted 18 January 2013 - 12:55 AM

I think my local doctor (actually, nurse practitioner) understands my condition well regarding decubitus ulcers, bowel/bladder program.  I do think rehab physicians have a more in-depth understanding and would see one if I lived nearer to one. 

 

However, I regularly meet health care professionals, including doctors, whose understanding is not so great:

-Occupational therapist that I met a few days ago expressed surprise that I had my son after my injury and said "so you can still  ___" (did not actually say the words). 

LPN in rehab facility (where they don't get many SCI patients):  "So your bowels don't work?"  - did not quite not quite understand why showers 3 times a week not coinciding with my bowel program wasn't okay, and why I stayed in the bathroom so long for having a BM, and why it made such a mess and why I needed more than 3 gloves. 

Wound care doctor, first time he met me:  Thought I lived in a facility, and when he heard I had a son who was at that time 11: "How on earth do you take care of an 11-year-old?" 

OB/GYN resident:  While I was having a pelvic exam while pregnant, and having leg spasms which interfered with the exam "Stop doing that!" 

Many health care professionals outside of SCI rehab assume that I need an aide to bathe, dress, etc.  although I am a T11 paraplegic. 

Even after explaining repeatedly that I have a complete SCI with no sensation, even nurses that I see regularly always forget that I can't feel things like burning on urination.

 

Hehe just realized I answered this question a few years ago but some of the above are newer experiences.


Edited by ksheja, 18 January 2013 - 12:59 AM.



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