[silone74]

Hi i had a visit to my gp today for my pain in my chest and shoulder blade that has been on going for along time,this is a new practice as i have moved areas and the doctor was going through all of my notes and took the report out of my accident and the damage report for my spine ,now the hospital never told me the full extent of my injuries i have no idea why and i was shocked to find out that not only had i broken my spine at t3,t4 and L1 which i was told about in hospital but i had also broken t12,L2,L3,L4 and L5 i was never told about those breaks for some reason he also showed me the report and i never new that i had damaged my liver and the full extent of my right lung damage it left me abit shocked at the damage i had done but had no idea about i new i had been given an hour to live at first but i dont know why they did not tell me about the injuries not that it makes much of a change now but it still was a big shock to find out.

Any way just thought i would post on here i was feeling abit weird about it.



Take it easy

Si.

[greybeard]

It seems to be the custom here not to be too free with information. Last summer I eventually got a CT scan and was told I had a "few problems to your back". It wasn't until I requested a copy of the full report that I discovered the extent. Why do the medical professionals think we should not be given the full facts?

This post has been edited by greybeard: 24 February 2009 - 08:47 PM

[Lucydog]

Funny Ive had a similar experience. When I arrived here my Gp took one look at me and my notes and basically shouted 'crikey' and packed me off to every consultant in the North East. Like you I had no idea what was in those notes and I have a medical degree of sorts and think I sort of ask the right questions in the first place. My husband knew even less than I did. Its shocking really.

[Santa Cruz Soul Surfer (LRO)]

Ya, I can really appreciate that...I did'nt learn I had pulverized my S-3, until a year after my injury when I got another CT scan...I was like, "hey, where the hell is my tailbone?". This extra injury, that was unknown to me up until that point, explained many of the bladder spasisity problems I have and yet never knew the exact cause of...

I think one of the reasons doctors are'nt always as free with every detail, is because everyday they are dealing with people who have "new" SCI's and under most circumstances they would be used to seeing us pretty emotionally fragile at that point. I would think those preconceptions carry over into other encounters with us as well... Causing them to adhere to the "what you don't need to know, can't hurt you" philosophy.

Not saying this is right, I could be wrong...It's just my .02 as i've had the chance to think about it for awhile now...

[silone74]

It shocked me! I came out of the gp's with alot of memories of being in A an E it sort of shook me into thinking of the accident all over again took me by surprise the way i felt it actually made me forget to ask about some other problems with the doc that i had wanted to talk to him about.
I spoke to my parents about what they had been told when i was first taken into hospital and they new nothing of those injuries either,i dont know why the injuries weren't discussed with me after all the others had been?? I am thinking of asking to see the notes from the spinal unit next time i am there for a check up and ask to see the scans and xrays as i have not seen any of them or been talked through what was what with the breaks not just in my back but all of the other breaks around my body.
I want to know what operation i had 2 i know they split my chest and was told it was to fix an artery but it has made me wonder about alot of things that i had put behind me or at least put to the back of my mind.


Si

[Travelling Blackbird]

I had a similar experience in Ireland. It seemed to me like the doctors had decided what information I needed, and that was all that I was going to get. I only heard about two injuries, but there were more issues in the charts, and I only found out when I was getting everything translated so I could move back to Poland.

I've found German doctors are a lot more thorough with giving information without being asked, and with doing more tests than standard, to catch more issues. My three main doctors here have very holistic approaches.

I don't know why doctors choose to keep information back. Is it to keep the patients focused on the major issues, or to stop people from freaking out? Is it to keep people in the dark so the doctors still have control? I just don't know.

[Lucky]

Last time I was at the spinal unit they gave me my records while I waited in the waiting room.
I too was shocked at what I read. Although I knew alot, I read I drown, my lungs collapsed and had a chest drain, swelling to the brain, pnumonia and they said to my mum they couldn't promise they'd be able to keep me alive....poor mum. It was good to see all the details though. I always got the impression they were in such a rush at the spinal unit that there was no time to talk. Even when the consultant said, "you may never walk again" it seemed no big deal... you know?

[greybeard]

Travelling Blackbird, on Feb 24 2009, 09:11 PM, said:

I don't know why doctors choose to keep information back. Is it to keep the patients focused on the major issues, or to stop people from freaking out? Is it to keep people in the dark so the doctors still have control? I just don't know.

My money's on the control thing. I think they want us to believe that they have actually finished "practising" in their "practice", and now have some idea what they are talking about! Don't believe a word of it myself

[twisted_ophelia]

This is why I've always made it a point to read all my files and medical records over the years. I've never had a doctor refuse to let me do it even if it means sitting out in the waiting room with my file trying to decipher medical terms and lingo for an hour. Some have even been more than happy to take a bit of time with me to go over everything. Passivity and spinal cord injury do not mix. It's super important to be vocal and outspoken with all medical personnel you come in contact with. I figure, it's my body and I want to know exactly what the hell is going on with it.

[hurbshankin]

twisted_ophelia, on Feb 24 2009, 07:47 PM, said:

This is why I've always made it a point to read all my files and medical records over the years. I've never had a doctor refuse to let me do it even if it means sitting out in the waiting room with my file trying to decipher medical terms and lingo for an hour. Some have even been more than happy to take a bit of time with me to go over everything. Passivity and spinal cord injury do not mix. It's super important to be vocal and outspoken with all medical personnel you come in contact with. I figure, it's my body and I want to know exactly what the hell is going on with it.

+1

You must advocate for yourself. This means educating yourself as well. Nobody but you is responsible for you!

Hurb

This post has been edited by hurbshankin: 25 February 2009 - 01:40 AM

[Jax]

Hell, my doctor didn't even think I needed to go to a rehab facility. I got stuck in the regular ortho rehab center of the hospital, as they did not have a spinal rehab center. I was the sole spinal cord injury in the rehab unit. Three and a half weeks and out. I pulled the screws out of L4, and that's when the ortho surgeon explained all the initial damages and the secondary damage to me. None of my other doctors ever told me anything more than that I had injured my spinal cord between T12-L1. Total damage was a bit more. Two destroyed vertebrae, and actually smashed the cord all to hell for about three inches initially and another inch or two the second break. I have found that the doctors there are mostly quacks. My ortho and my urologist are the only two who have actually been informative and open with me.

[cosmosmallpiece]

Yesterday I went my GP again,
I have this weird problem my neck hurts and it is as somebody is squashing my head,
this was on Sunday and Monday and now it is something stuck in my throat and squashing my jaw,
this has been giong on for some time and I have all ready had a scan on my neck but they can not find any thing wrong,
does any body have any idear why.

[silone74]

Hi cosmosmallpiece i dont know what the problem would be but i hope ya get it sorted asap.

Talking about the notes situation i am going to get the notes to read next time i am at the consultants for my check up which is due real soon i will make a point of asking them to either go through them with me or let me have the notes and sit in the waiting room to read them and see what has actually happened to me .

It seems to be the norm to not reveale the full extent of what has happened its sh@t to think we are left in the dark when it comes to our own bodies.
I feel a little better about not being the only one not that its a good thing that we are left out of the loop but ya get what i mean


Si.

[Angela250153]

Here in the UK you can request copies of your files from the hospital you were treated in.

I had my 2 back surgeries at Atkinson Morley Hospital. Last year I completed a form requesting copies and for a fee of £ 20.00 I now have my records and also a CD with one of my MRI scans.

I have had more scans since also for other things and I will request CD copies of those as well.

Apart from that I do have the reports from those scans I don't have on CD yet.

[Trinity]

Funnily enough you are not automatically entitled to read your medical notes, you can however apply for a copy but the hospital has the right to withhold any parts they deem 'necessary'. This may include information that they think may cause distress or be incorrect. How they can judge what may cause you distress however is beyond me! A consultant is very unlikely to just let you look over your notes, but they should be able to go though things with you although you may need a separate appointment to do this as it could be quite time consuming. Plus doctors handwriting is generally awful! A lot of shorthand is used and anyone without a medical background could well struggle to understand some of the terminology used

[twisted_ophelia]

trinity, on Feb 25 2009, 04:23 PM, said:

Funnily enough you are not automatically entitled to read your medical notes, you can however apply for a copy but the hospital has the right to withhold any parts they deem 'necessary'. This may include information that they think may cause distress or be incorrect. How they can judge what may cause you distress however is beyond me! A consultant is very unlikely to just let you look over your notes, but they should be able to go though things with you although you may need a separate appointment to do this as it could be quite time consuming. Plus doctors handwriting is generally awful! A lot of shorthand is used and anyone without a medical background could well struggle to understand some of the terminology used

Hmm, I'm not sure that that is the case here in Canada (or in the USA). I've never had anyone refuse me looking at my medical records. The shorthand and illegible writing is definitely a pain though.

[edlee]

My writing is bad enough to pass for a dr's,,,

Here, it is a no brainer,,,, your records are your records,,,, they can charge a bit for copying, but they can't withhold them.

I have gotten everything, at one time or another, to use for social security,, then for a lawsuit ( no end in sight), but neglected to make my own copies until this last round of tests,,, now I routinely have all results and diagnoses sent to me as well as my other drs.

For most of them,, the records are on a computer anyway,, so emailing them to me is easy. I just keep them on a USB memory device, as a backup, in case I see a new doctor.

Since I didn't become aware of my surroundings for about a month and a half, I didn't really know how bad I was at the beginning. By the time I "woke up" I was feeling pretty good,,,, except for the crippled part. Never knew about the eight fractures around my right eye, or my stroke,, till I read the stuff, a year later.

Part of the reason they hold info back,, is, I think, that they don't want to answer a bunch of dumb questions. Not yours, of course,,,,maybe mine...
ed

[dom]

silone74, on Feb 24 2009, 07:26 PM, said:

Hi i had a visit to my gp today for my pain in my chest and shoulder blade that has been on going for along time,this is a new practice as i have moved areas and the doctor was going through all of my notes and took the report out of my accident and the damage report for my spine ,now the hospital never told me the full extent of my injuries i have no idea why and i was shocked to find out that not only had i broken my spine at t3,t4 and L1 which i was told about in hospital but i had also broken t12,L2,L3,L4 and L5 i was never told about those breaks for some reason he also showed me the report and i never new that i had damaged my liver and the full extent of my right lung damage it left me abit shocked at the damage i had done but had no idea about i new i had been given an hour to live at first but i dont know why they did not tell me about the injuries not that it makes much of a change now but it still was a big shock to find out.

Any way just thought i would post on here i was feeling abit weird about it.



Take it easy

Si.

HI si yes thats strange, i was told i had 'old' fractures of my upper back when i was told i was L1 Incomplete,this happened 20 years ago when a wooden pallet was accidentally kicked off a 20ft high shelf and landed across my shouder blades,at the time they x-rayed and said only bruising!

[silone74]

Hi it is only a couple of weeks until my check up at the hospital so i will ask about all of my notes and ask for copies.


Si

[Meadowlarkmark]

Yeah, when I broke my neck in 1966I thought being a quad was the issue but later in University in my mathematical sequences, I was having somuch trouble i got myself check out and found that I had some major brain damage--along with c-4-c-5 partial break--I never manifested verbal problems and I think they just focused on the mobility issued I had.

[Travelling Blackbird]

Meadowlarkmark, on Mar 4 2009, 10:27 PM, said:

Yeah, when I broke my neck in 1966, I thought being a quad was the issue but later in University in my mathematical sequences, I was having so much trouble i got myself check out and found that I had some major brain damage--along with c-4-c-5 partial break--I never manifested verbal problems and I think they just focused on the mobility issued I had.

"If there are no verbal problems, then there's no injury to that part of the brain, so we don't need to do a CT. That'll save money!"

Bizarre as that sounds, I can totally see it happening in a neuro ward. The physical examination is relied on to determine what tests need to be done: if there's a reflex here, then we don't need to worry about that part of the spine; if the eyes respond to light, then we don't need to worry about that part of the brain, and so on.

[Ches]

Same old story here. I was told about certain things.. always just generalities. You broke some ribs, multiple fractures in back, sci at 4/5 level, and collapsed lungs.

After requesting and reading medical records I found out they suspected a mild brain injury, possibly a stroke but I showed no obvious symptoms so it was left incomplete. I had thrown a blood clot and nearly died, a few breaks in L2 to go along with the C and T breaks and so on.

I guess it doesnt bother me too much, considering I was out for 12 days. But I can remember multiple times that I would complain of this horrible pain in my breastbone, they would assure me it was just the 10 broke ribs. Those lazy jerks, I had two nice breaks in my sternum and it was all over my chart, and to top it off it was 11 ribs.. what the hell, do docs just round it off now?

[Jax]

what the hell, do docs just round it off now?


Apparently...

[maggiec]

I feel quite priveleged! Had my accident in France, August 2006, and was told on the evening of my admission that I would never walk again!!! I was kept fully informed from the outset that I had smashed several vertebrae from T10-T4 and had rods and plates fitted within a few days. On transfer to Oswestry in october the consultant confirmed what I already knew. Im am now a T3 complete paraplegic.Although "knowledge is power" there are times when i would rather not know!!
Maggiex

[bobm]

For less catastrophic injuries the doctors can't predict the outcome with any certainty; they don't know just how damaged the cord is.
They don't particularly want to say this, and they don't want to say that any recovered functionality will come at the cost of spasticity and pain.
All they ever said to me was that the surgery was designed to stop the condition getting worse.

There's a degree of embarrassment on their part, I think. But if you ask me if I'd rather they'd spelled out a worst case scenario, my answer would have to be ..probably not.

[Travelling Blackbird]

bobm, on Mar 9 2009, 11:56 AM, said:

For less catastrophic injuries the doctors can't predict the outcome with any certainty; they don't know just how damaged the cord is.
They don't particularly want to say this, and they don't want to say that any recovered functionality will come at the cost of spasticity and pain.
All they ever said to me was that the surgery was designed to stop the condition getting worse.

There's a degree of embarrassment on their part, I think. But if you ask me if I'd rather they'd spelled out a worst case scenario, my answer would have to be ..probably not.

I get that they can't necessarily predict the outcome of the less catastrophic injuries until they've seen how the body reacts to the corticosteroids, until they've seen all the test results, and so on. I get that doctors are considered liable, and if they give too much hope or too little, they can get sued, and so on. However, when someone's going back to the same doctor again and again, and the doctor is recording information about the state of some part of the body without ever telling the patient... that seems like taking away the patient's right to decide about aspects of their treatment. I would like to know what's going on when it's going on, not years later.