DIY Medical Research- Any Recommendations ?

[weststreet]

What I'm really looking for are pointers to sites/forums that I can get info from.

I've got a problem with my ankle. It was broken 4 years ago, operation and pinned. No probs till recently. Been to the GP, had the x-rays ( everything fine ! ) so will go through our company health scheme to see a specialist.

I'd like to do some research myself re possible causes of the pain ( before I see the specialist ). If I 'google' broken ankle, I just get sites with the mechanics, treatment of etc. What I need are problems other people have had after a 'successful' recovery and causes for , and so far I haven't been able to find this kind of info. So any thoughts appreciated. Thanks.

[money]

Hi, I snapped my arm 4 years ago i a riding accident, I had a plate and 10 pins put in. I then had a car crash 9 weeks later, hurt my arm, xrays looked fine (I said there is a difference but i was told to shut up). I had my final appointment with consultant, he discharged me.

I got on with life, got pregnant, married, moved house etc. When my daughter was 6 months old i went to Gp, it had got to the point where i had no control at all, switching a light switch on hurt, couldn't bath my daughter, and in labour there was more pain in my arm than elsewhere and she referred me to local hospital. Had an xray done and it looked like it hadn't fused so they referred me back to my consultant.

Anyway, it turned out that inside the bone had died, one side had fused, pins were backing out (7 of them were unscrewing) and everytime i moved my arm the break was opening and closing and trapping the radial nerve too. So they had to take bone from my hip to place in my arm and replce the plate and pins with new ones. No problems anymore.

I would also suggest looking at all your medical notes. I got mine for a compensation claim and my consultant had said (before he discharged me) that the car crash has caused damage but he hopes it will clear by itself!!!!!!

I know no forums etc for you, i had the same trouble trying to research it all.

Your pain could be scar tissue, nerve damage, dead bone(my consultant didn't notice this until the op) backing out screws or just not united.

Have you compared xrays closely?? Any slight move can cause pain!!


Good luck.

[weststreet]

Thanks for the reply money.

It's frustrating. I'm sure I'm not unique, and I'm sure this info/other cases are on the net, it's just I haven't found them.

WS

[money]

I never found any/many. I can't quite remember!! i will have a look later for you and see if i can spot anyfor you.

Can I be cheeky and ask roughly how old you are? I know that the older you are the more old breaks can hurt. Mine still hurts if I do too much. Have you been offered physio? you could just be walking differenty to compensate for discomfort and now it's got this bad because of that??

I do go on, sorry!! i will have a nosey round the net!!

[Bookworm]

When I broke my ankle 9 years ago, it was a clean fracture, not pinned. I got 4k compensation because "clean break, no lasting sequels" is how it was graded in the compo scales.

When I said that to my -nurse of *cough* years- sister, she snorted. In her professional experience, there is no such thing as a no sequel bone trauma.

She was right. 9 years on, I get twinges now and then, it feels like someone is squeezing my ankle very hard in a circle, right where the fracture was.

It's simple really. Once it has been broken, a bone is never the same again. The way it knits, the porosity around the fracture site, the bone density. If you think that fractures can be clearly identified in age style in thousand of year old skeletons, it says it all really.

[weststreet]

Originally Posted by money

Can I be cheeky and ask roughly how old you are? I know that the older you are the more old breaks can hurt. Have you been offered physio? you could just be walking differenty to compensate for discomfort and now it's got this bad because of that??
I do go on, sorry!! i will have a nosey round the net!!

Hi money. Well I'm 46 years young. On the physio side, I had it ( through work Bupa scheme ) after the cast came off & I was walking again. Had about 12 sessions. And yes the 'walking differently to compensate ' came up - I was doing it. I was taught various exercises to do which I religiously still do.But I'm sure my walking pre and post accident are different, don't really know what I can do about it though.

Thanks also Bookworm. I knew I'd lost flexibility in it ( physio measured 20% loss) and I was deep down aware it would be more susceptable to arthritis etc, but later down the road. But because everything was ok for 4 years, and these problems came on suddenly not gradually, I was a bit gob-smacked.

Anyways, still looking for info/sites if anyone comes across any. Just had a chat with my GP ( x-rays appear fine ). He thought it could still be the metalwork impinging on a nerve ending. He's writing a letter of referral to a specialist and I'll see what this person says. I'm just playing it by ear, trying to learn as much as I can about the whats, whys and treatments.

It's not that I don't trust the medical fraternity, it just doesn't hurt to do your own research

[breadline]

HI West street
this piece has alot of technical stuff and results of a survey.

It monitors recovery of crushed feet but doesnt say to what exstent the damages are, So there could be a little info in there some where.

not sure if im allowed to post links so google the below details

MORBIDITY FOLLOWING CRUSH INJURIES TO THE FOOT
August 4th, 1993
Mark S. Myerson, MD; William C. McGarvey, MD


anything helps
right

hope you find some respite soon.
BL

[weststreet]

Thanks Breadline

[Loula]

Hello,

My youngest daughter has a growth problem which has finally been diagnosed. After almost 9 months of hospital visits and being passed from Paediatrican to Ortho surgeon and back again I decided to try and find something out for myself. It took me weeks of internet trawling to hit the right combination of words to even try and find out what might be wrong. All the things they said was wrong with her just didn;t bring up anythign remotely near. I found the correct word just by fluke. The winning word was 'dwarfism'. She is not a 'dwarf' but has some of the characteristics.

I would suggest you try all manner of words associated with your pain, injury, any bone names and even try weird things like 'foot related pain'. You never know what will turn up trumps.

Sorry I cannot be of anymore help.

LOULA

[weststreet]

An update for all the people kind enough to respond. I saw the specialist last week, he knew his stuff, was very thorough and I trust him. There's a lot wrong, individually not terrible but collectively ,,, it's no wonder I was in pain. Anyway I'm to have an operation to have all the metalwork removed and also cortisone injections. There are other issues, for one a joint under the ankle joint is damaged, but it may be too late for that .. we'll see.

First thing. I thought the hospital had done a very good and professional job with the repair. In hindsight it appears it was good enough to deal with the immediate problem ( the break ) but no more than that hence the late complications now.

Second thing. This chap said he always takes out the metalwork from patients as it can irritate after a time ( this is what is happening with me ). It's only neccessary for 2 months. I asked why my hadn't been removed, answer was cost. In the NHS the longest waiting list is orthapedics.

Third thing - I hope I haven't caused damage to everything by ignoring the pain for a few months. I just thought it would sort itself out - stupid me !

Last thing. I know everyone doesn't have it, but I was SO grateful for having the NU cover via work. Never used it before, used to think it was a waste of money. Not now.

Thanks again for everyone who responded.

[letssueeveryone]

I reckon we should just give up on the nhs and just diagnose ourselves over the internet as everyone seems to do well here and then sue their arses. I know that every time we sue we take more money from the nhs but they should never be allowed to make a mistake coz they're not like us. We can make mistakes but they are the nhs and their mistakes are more serious than any we make and besides they're funded by the taxpayer. Looking at everything here they obviously don't care one little bit about us and we seem to know as much as them.We need to be like the usa where we pay for everything and the docs do every test and exam under the sun even if we dont need it just to make sure and that way they protect themselves and they protect us too and we can still sue them anyway.
I dont know if we can sue internet sources of advice if they get it wrong

[litestar]

Hi Weststreet.

This may be late in coming but I'm new to the forum and you may find it useful in the future.

Glad to hear you've seen specialist now and have some answers.

As a therapist I use online sites to assist me to understand complaints I'm unfamiliar with:

www.wrongdiagnosis.com gives information on symptoms etc.
www.medical-library.org/mddx_index.htm you can search in various ways here.

Good luck

Litestar

[lynseyf]

This website lists practically every research paper published in medicine and science. You might not get access to all the articles, I work for a University and they suscribe to loads so we get free online access, but if you see any that are particulary interesting you can buy them for 24 hours or if you are near a decent Uni ask if you can go and visit their library where they will have bound volumes of all the journals which you can photocopy and take away to read.

[lynseyf]

didn't put in link D'oh
Entrez PubMed

[royzor]

Originally Posted by lynseyf

didn't put in link D'oh
Entrez PubMed

Oh my God this site is fantastic.

I have been looking for information on a certain condition called Hydrops Fetalis for years.
Finding the actual cause was not the problem it was other information i needed to get answers for and i found the answer here. I am so very very thankful for this link.
I will possibly start my own post on this matter soon, now that i have this link.
Once again thankyou very much.

Roz

[oz4725]

As far as the earlier posts go, i smashed my hand in Kosovo in 1999. Chopped a couple of fingers off which were sewn back on and had about 14 fractures in hand/forearm. Virtually from the outset i was told that broken bones are very susseptable to arthritus and i get a lot of pain and stiffness at this time of year.

As far as the research posts go i continued my run of good luck in 2001 and was diagnosed with a brain condition! I spent a fair bit of time at the National Neuro Hospital in London and every single person i spoke to about research told me to check out all American websites. They said the States are generally a year or two ahead of Europe with regards to medical technology. Hope its a possible pointer for someone.

Oz

[pickle29]

Originally Posted by lynseyf

This website lists practically every research paper published in medicine and science. You might not get access to all the articles, I work for a University and they suscribe to loads so we get free online access, but if you see any that are particulary interesting you can buy them for 24 hours or if you are near a decent Uni ask if you can go and visit their library where they will have bound volumes of all the journals which you can photocopy and take away to read.

Entrez PubMed


Lynsey, I can't thank you enough for this link. I have been suffering with Chronic Urticaria for two years now & trying to get my doctor to see that there is some link with the fact that my thyroid antibodies are raised.

In less than five minutes I have found 3 pages of evidence & research which shows this to be the case (& that's just using the short descriptions from the cases without actually going into the full documents)

You may have just saved my sanity