29 replies to this topic

[allister]

Those who have looked at my profile, know I have been bounced around hospotals, fighting a loosing battle for some help, diagnosis and rehab.

A T4 friend managed to get me a referal to see her consultant at Stoke Mandeville.

I went down in June and had some fresh MRI's , ultra sound scans, and a couple of X-rays too.

Yesterday, 13th July was my first sit down chat with this consultant. Since my RTA in 1983, the Lumbar has been my worst problem, I've never bothred about the thorasic or cervical ones that were displaced. I've just lived with the problems.

Any how,This lovely lady asked me to explain to hr how I had arrived at my curent health state, Para L4 L5, no bladder, no bowel function, not leg usage.

Well after chatting about 30 mins, and after her listening and taking the odd notes, she put the fresh MRI's on to the light box and began to review them with me. Apart from the fact that they discovered I did have a brain, There was a big bulge showing on C4 and a tight narrowing around C4 and C5. Abit further down , the same again at T4, and then the wafer thin discs at L4 L5 and the scaring and compression from L4 to S1.

Whislt I had been talking to the consultant, I had apparently described to her (inc my very recent 3wk stay in a hospital for 'high blood preasure') all the symptoms of AD's, and along with the had swelling, poor dexterity in the fingers, numbness on the inner arm, believes that I could be a quad!

What I can't understand is:
WHY the hell when I had 5 sets of MRI's done at the begining of May this year that none of this was picked up?
WHY when I ws told to show info on AD's to the Drs in May when I was in for the 211/158 high blood pressure, and they said it was stress induced?
WHY when I have complained about my hands I was told Arthritis?
WHY for the past 28 years Have I been told muscle strain in the neck, even when scans have been taken?????


The consultant told me, not asked me, That I would be admitted for a minimum of 4 weeks as an urgent case as soon as a bed became free, so probably with in a weeks time!!!

I wasn't sure if to laugh at he absurdity or to cry with relief that I wasn't going mad or wasn't making it up.

28 years !! * years of hell, and 1 'lost' year of battles for help.
I think the previous Drs I have seen must have all been trained by Prof B.A.Stards !

[JimG]

I hear you.

I was misdiagnosed with ALS, b/c the orthopedic surgeon who fixed my L5 break and a "specialist" in ALS that he sent me to, didn't believe that the herniated disc at T6/T7, which was compressing 1/3 of my spinal cord....."couldn't be causing my paralysis".

You have to be your own advocate and not give up when you run into road blocks/obstacles from doctors.....especially where you live with socialized medicine.

[greybeard]

Look on the bright side. You've at last found someone who not only appears to know her subject, but also actually listens to you. Who knows what your future might hold from now on. Keep us posted.

Best of luck.

[greybeard]

Al, Are you aware that you managed to post this twice? I answered in the other one.

[Snakeye]

Outrageous situation but it doesn't suprise me a wit. Hope things work out and you get some proper care...

[mellowgator]

allister,

i feel badly for you. every sympton you have fits under ad and i know you have talked to your previous dr.'s about this very thing. you are so incredibly lucky that these so called dr.'s didn't kill you with their wrong diagnosis. thankfully you found a dr who will hopefully get you back on track. as for your old doctors, how many other patients have they misdiagnosed who were't as lucky as you. they need to be dealt with before others are killed. if you had gotten help sooner wouldn't you still have the use of your legs? these quacks must be reported. sorry you have to go back to the hospital but at least you wonn't be stuck on a stroke ward again.

mellowgator

[greybeard]

JimG, on 14 July 2010 - 04:01 PM, said:

You have to be your own advocate and not give up when you run into road blocks/obstacles from doctors.....especially where you live with socialized medicine.

The quality of treatment you receive in the UK is more to do with the ability and knowledge of the doctors concerned rather than whether it was social or private medicine.

I have received excellent treatment on many occasions from Health Service doctors and some really crap treatment while paying way over the odds for private medicine.via insurance. Often the only benefit of paying was that I got seen a bit quicker and had a private room. There is no guarantee of better a better outcome.

[JimG]

greybeard, on 14 July 2010 - 04:25 PM, said:

JimG, on 14 July 2010 - 04:01 PM, said:

You have to be your own advocate and not give up when you run into road blocks/obstacles from doctors.....especially where you live with socialized medicine.

The quality of treatment you receive in the UK is more to do with the ability and knowledge of the doctors concerned rather than whether it was social or private medicine.

I have received excellent treatment on many occasions from Health Service doctors and some really crap treatment while paying way over the odds for private medicine.via insurance. Often the only benefit of paying was that I got seen a bit quicker and had a private room. There is no guarantee of better a better outcome.

Maybe I'm wrong in my assumption based on what I know.

During our ordeal, my wife was online all day learning everything she could about ALS and spinal cord injuries, and in the process made friends with people who had both to learn first hand from people with the problems, vs. doctors posting articles online.

One of her friends was a T7/T8 who was misdiagnosed with MS and treated for it for 2 1/2 years, rather than looking at the herniation.

Towards the end, he had lost bowel, bladder and sexual function.

He always said he got pidgeon-holed, and the system would not approve of any further scans, MRI's, etc. b/c a "specialist" in the disease had diagnosed him with MS.

It wasn't until a rogue doctor looked at him and personally pulled some strings and took him down to an MRI machine and ran further tests did he finally start getting treated for his real problem.

At least I wasn't restricted on testing, and if it wasn't for our insistence/persistence.....I might still have ALS.

[edlee]

The percentage of a**holes is pretty consistant,, through out the worlds population. Occupation nor intelect seem to make any difference.

As for doctors,, while it's certain that their abilities vary,, one thing will always be true,, the good ones will have bad days and the bad ones good. Even with all the research on their credentials you might make,, you still need to be both vigalent and lucky.
ed

[qbounce]

Jim G,
I've had the same luck as Alli here in the US with doctors, trying to find why I'm dealing with my condition. So you're crack on Socialized medicine really has no foundation. All doctors have an opinion, but as you said, you have to be your own advocate when it comes to agreeing with and fighting for the right ones treatment for you.

In my experience, HMO's are far worse, as you're relegated to a very select few doctors within your vicinity, and you're damn lucky if any of them just so happen to meet your needs when it comes to a complication in health. After this, I'm sticking to a PPO. At least now I can choose my own doctors.

[Smileyblue]

Allister, I am thrilled that you're finally getting real help! Keep your chin up and stay focussed on getting better.. ;-)

[jenny407]

Allister, I'm sorry for all that confusion and difficulty. I do hope you'll get some help and proper treatment now. My experience with doctors (here in Germany) is often similar, unfortunately. I tend to read a lot to get informed as far as I can (which is also why I'm on this forum for my friend, whose English isn't too good), and I tend to get on doctors' nerves a lot, too. But then our health is our personal business, very important, and pretty often, there is misdiagnosis. Sad as it is.

You were probably lucky to find this doctor who really took her time and looked closely at the scans. As far as possible, always get informed yourself, ask a second or third opinion, be a nuisance when you don't get sufficient answers or treatment. Insist, ask again, be stubborn, sometimes even loud. (Terrible, isn't it? Normally not my style, actually.) But it seems you're on the good way now, in competent hands.

Good luck, Allister. Honestly, from my heart.
Jenny

[Tinbasher]

Jim G

I dont know what your experience is of Socialised Medicine but don't belive the nonsense that that the anti Obamah people were putting out.

The NHS has its problems but none of us have to worry that our injury will bankrupt us or where the next catheter is coming from. I have never had anything less than good experiences with the NHS.

Tin

[DannyR]

Glad to hear you are getting the help you need.I went through the same thing. I had pretty much lost the use of my hands and my doc thought I had carpal tunnel. After my surgery I was looking at my records and there was no mention of balance problems and later the inability to walk.I was told that the hands are the first to go. My doc in thearpy told me that it is unfortunate that some docs focus on one thing and can't seem to get past that. They treat us with a closed mind.Best wishes.

[rue2you]

All I can say is been there done that too and still don't have definitive answers. I am glad you are finally getting some and am praying that I might get some someday just for some peace of mind about it all. You know, you just like to know why sometimes. Sometimes it seems a car wreck would have been so much simpler.

Speaking of that...I had a head on collision in 1995 and lost all my front teeth and broke all the bones in the roof of my mouth. It really banged my face up pretty bad (no air bags). I did have a seat belt on. I had no whiplash pain so I never had a scan of any sort. I had an x-ray on my knee because I hurt it pretty bad. Anyway, my function level is T10 incomplete but the dr's at Cleveland Clinic can't see anything there. They say they see "something" around C7 but didn't know what it was. They said it wasn't an MS lesion so the dismissed it. However...I had wondered if this goes back to the car wreck and why I find Qbounce's tethered cord interesting!

[allister]

Thanks guys for your comments, its good to know that I'm not the only one miss-treated here
but its sad that it happens so often. I do think our NHS system is good, as here in the uk we don't
have to worry about the cost of treatments,and hospital stays, . All these costs are taken care of
for us. I just wish those working within it, were better educated to patients needs and all local
authorities offered the same facilities. They should all be centres of excellence, to avoid us having to
search when in our time of need. We know our own bodies better that anyone else does, we know when there
is something wrong with it. So please stop telling us that there is nothing wrong with us, and that we
are making things up, OK !

I'll keep you posted on what happens next !

Al

Edited by allister, 15 July 2010 - 03:38 AM.

[allister]

mellowgator, on 14 July 2010 - 04:17 PM, said:

allister,

i feel badly for you. every sympton you have fits under ad and i know you have talked to your previous dr.'s about this very thing. you are so incredibly lucky that these so called dr.'s didn't kill you with their wrong diagnosis. thankfully you found a dr who will hopefully get you back on track. as for your old doctors, how many other patients have they misdiagnosed who were't as lucky as you. they need to be dealt with before others are killed. if you had gotten help sooner wouldn't you still have the use of your legs? these quacks must be reported. sorry you have to go back to the hospital but at least you wonn't be stuck on a stroke ward again.

mellowgator

if you had gotten help sooner wouldn't you still have the use of your legs?

In answer to that one Mellow, I have been told Quite possible !! But not in a great way, maybe just a wobbly stand, or a few very well aided steps at the most, but even that would be an asset to help some transfers.

I can not put in to polite words just how angry and frusrtated I feel. Hell, life to short to harbour negativity, and it only raised the bloody blood pressure !!

Just hope that one day someone might return the favor to them !

greybeard, on 14 July 2010 - 04:08 PM, said:

Al, Are you aware that you managed to post this twice? I answered in the other one.

Nope, I wasn't aware, but I am now !!! lol

sorry guys but after the week I've had, nothing suprises anymore !!

[allister]

Hey, guess what came through the post ???

I eventually got some results back from my local hospital where I spent most of May this year.
The tests they had done for a hyper active adrenalin producing tumor, that grows from the kidneys were all negative ! They thought that it was a possible cause for my rampant blood pressure. Thanks for Trinny making me aware of this possability.

They also told me that the 6th lot of scans they took when I was recalled on the 13th june (day befor I went to Stoke Mandeville for scans) showed no signs of any other degeneration other than the site of my previous op's done in 2001 ! ! !

So according to that, I must have caused the narrowing at C4 Cr and T4 overnight, as well as the causing the bulges in my sleep( wish i could do that else where !!! lol )

It really does scare me just how incapable these so called Drs are.

If I hadn't been so aware of the changes in my condition, If I hadn't spent this last year shouting - arguing - screaming - and searching all possible avenues for help because I didn't agree with their answers, what could have happened ? What if I had taken their words as gospel if I hadn't known better !

Just what or who's scans were they looking at, obviously not mine....................

[WildKat]

allister, on 14 July 2010 - 03:30 PM, said:

Those who have looked at my profile, know I have been bounced around hospotals, fighting a loosing battle for some help, diagnosis and rehab.

A T4 friend managed to get me a referal to see her consultant at Stoke Mandeville.

I went down in June and had some fresh MRI's , ultra sound scans, and a couple of X-rays too.

Yesterday, 13th July was my first sit down chat with this consultant. Since my RTA in 1983, the Lumbar has been my worst problem, I've never bothred about the thorasic or cervical ones that were displaced. I've just lived with the problems.

Any how,This lovely lady asked me to explain to hr how I had arrived at my curent health state, Para L4 L5, no bladder, no bowel function, not leg usage.

Well after chatting about 30 mins, and after her listening and taking the odd notes, she put the fresh MRI's on to the light box and began to review them with me. Apart from the fact that they discovered I did have a brain, There was a big bulge showing on C4 and a tight narrowing around C4 and C5. Abit further down , the same again at T4, and then the wafer thin discs at L4 L5 and the scaring and compression from L4 to S1.

Whislt I had been talking to the consultant, I had apparently described to her (inc my very recent 3wk stay in a hospital for 'high blood preasure') all the symptoms of AD's, and along with the had swelling, poor dexterity in the fingers, numbness on the inner arm, believes that I could be a quad!

What I can't understand is:
WHY the hell when I had 5 sets of MRI's done at the begining of May this year that none of this was picked up?
WHY when I ws told to show info on AD's to the Drs in May when I was in for the 211/158 high blood pressure, and they said it was stress induced?
WHY when I have complained about my hands I was told Arthritis?
WHY for the past 28 years Have I been told muscle strain in the neck, even when scans have been taken?????


The consultant told me, not asked me, That I would be admitted for a minimum of 4 weeks as an urgent case as soon as a bed became free, so probably with in a weeks time!!!

I wasn't sure if to laugh at he absurdity or to cry with relief that I wasn't going mad or wasn't making it up.

28 years !! * years of hell, and 1 'lost' year of battles for help.
I think the previous Drs I have seen must have all been trained by Prof B.A.Stards !

Wow! Um... welcome to the world of Quadom I guess... It's good that after all these years things are finally starting to make sense if nothing else. I know what a relief it must be to all of a sudden NOT feel like you are crazy! I've had Cerebral Palsy and have been blind since birth. When I was seven I went to the new Dr. in the next community with the flu and he said something to my mom like "so she has CP" as he watched me walk down the hallway in front of them to his office. My mom didn't have a clue what he was talking about! She agreed to let him refer me to the kids hospital and they found out I definitely had CP. It wasn't until I was 17 however that I knew WHY I could never see! That was when an mri was finally done of my brain (which revealed that parts were actually MISSING!) Until then CT scans and X-rays were done and nothing really showed up. Of course the black eye I had at my second birthday when I walked into a door was blamed on my being "clumsy" as were many of the other times I tripped, walked into things etc. It's amazing what a Dr. that listens and takes the time to look further into things can find out!

[Smileyblue]

Their incompetence is very clear! Thankfully you are in much better hands now.. ;-)

[Lucydog]

I think the main problem with doctors is their thought and reason process, most are unable to think uotside the box so to speak. If they didnt see anything on your first scan for whatever reason then that box was ticked accordingly and moved on. its very rare any of them take time to review something, or even think 'I wonder..... They just march forward with their concrete thinking.
Id also like to point out that diagnosis is based on probability. If nothing showed up on scans then PROBABABLY it wasnt there. Just like if you go to the doctor 3 times with a headache you PROBABLY havent got a brain tumour. Most of the time for most of the people, probably gets it right. When it doesnt then its grim.

And it has nothing to do with out health system.

[chrisarnold6]

Incredible that some of the docs completed med school.

[allister]

Still waiting for a date! I know its complicated to link all the teams to be involved together and then obtain a bed around them, but I wish it was this week I was going in....

My brain has had far too long to think.

Its full of 'what if.....' 'I could have....' most of the senarios leave you wondering at the consiquences.....scary.....

I'll add a note then start a fresh chapter when I get a date.....

[jenny407]

Good luck, Allister. Keep us posted.

[ClaraTaylor]

Congratulations on achieving at last (perhaps) an answer x x x

[dangerousdave]

This topic begs the point -
When do we know the problem
know the symptons
know the answer
I know my C discs have been cousing pain and the rest for a number of years
It is only now that with some loss of arm power i am reluctantly persuing the surgical answer - and yes it does realy worry me - the what if

[Carolie]

My spinal cord injury was missed by emergency rooms at two different hospitals. The first hospital didn't so much as take a simple x-ray. The doctor took me off the backboard and out of the neck restraint, had me stand up, move around, told me all I had were muscle spasms, handed me a couple of prescriptions, and released me.

I saw my family doctor a few weeks later who referred me to a neurologist. I couldn't lift my arms above the level of my shoulders and the pain down my left arm was so bad I wanted to gnaw my arm off. I had never experienced anything like it but I knew something was terribly wrong.

The neurologist told me he thought all I had were muscle spasms, but just for grins, he would do an MRI.

He called me in a panic after getting the results. The discs at C5-7 were ruptured and sitting on my spinal cord. It would be a full 3 months after the accident before I had surgery and by then it was too late to correct the damage that had been done. There was nothing left of the discs, by the way. They were liquified by the force of the accident.

Most experts are only experts in their own minds.

[allister]

Carolie, on 31 July 2010 - 03:09 AM, said:

My spinal cord injury was missed by emergency rooms at two different hospitals. The first hospital didn't so much as take a simple x-ray. The doctor took me off the backboard and out of the neck restraint, had me stand up, move around, told me all I had were muscle spasms, handed me a couple of prescriptions, and released me.

I saw my family doctor a few weeks later who referred me to a neurologist. I couldn't lift my arms above the level of my shoulders and the pain down my left arm was so bad I wanted to gnaw my arm off. I had never experienced anything like it but I knew something was terribly wrong.

The neurologist told me he thought all I had were muscle spasms, but just for grins, he would do an MRI.

He called me in a panic after getting the results. The discs at C5-7 were ruptured and sitting on my spinal cord. It would be a full 3 months after the accident before I had surgery and by then it was too late to correct the damage that had been done. There was nothing left of the discs, by the way. They were liquified by the force of the accident.

Most experts are only experts in their own minds.

www.carolynboyles.com
www.livingwithspinalcordinjury.com

Thanks Caroline, Thats really cheered me up....LOL.!

How can they be missed? We, you / me and the rest know our bodies and we know when something is wrong. Back in 2001 when L4 L5 burst, my gp wasn't interested, muscle spasms ! It took 3 weeks of fighting, with the help of my physio to get the gp to raise a referal!
This last 12 months I have fought continuously, because I knew there was something 'new'. I don't even want to think of the consiquences if I hadn't fought.
Caroline, hope you were able to move forward with life. Once I know all is stable again, I intend to have FUN. Got 9 lost years to try and catch up on !!!

[jenny407]

Doctors. There are really great ones - and those others ...
When my husband had his serious motorbike accident many years ago, he had - as a consequence, amongst other things - about seven operations on his broken leg (complicated stuff). He was told to "walk on it, you're just scared, it's all in your head". So he walked - in great pain -, the bone broke again. More OPs.

A good friend of mine is a (very good) surgeon. And she said, really surprised, in wonder: "Yes, we doctors are told: The patient is always right!" (Meaning, when a patient has pain, you'd better believe him / her.) Does it take years of experience to understand THAT?!

I have learnt to get as much info as I can myself and then fight it out. Ask a second (and third) opinion from another doc.

Edited by jenny407, 01 August 2010 - 07:33 AM.

[allister]

continued on new post . . . . .help at last

continued on new post

help at last....