Hi all ,
will keep this as short as possible but like so many on here it is not a pleasant tale and hard to write but i need advice from patients not doctors who wont listen :
7 years ago i fell 2.5m into a concrete drain ..i was 19 am 26 now, fractured my wrist in the fall ended up with a horrible nerve disease called CRPS(my pet name for it is "CRAPS" but it stands for complex regional pain syndrome)its nasty and progrssive in short .
For years i've had tremors and burning and loss of muscle control etc in my hands "dropsies" i call it 3 yrs ago was discovered that vertebrae in my neck compressed (c5/c6) year later my feet started collapsing.Many psychologists,clinical psych consults and therapy sessions later not to mention whatever hydro ,stretching etc i did for myself .we now have the full picture... xmas this year i went into hospital for over a week because i lost all sensation in my right leg and my foot was frozen at a right angle..they couldn't help me but i was sent to an allergy doctor who turned out to be my saviour 8 months later...the original fall had caused bulging discs that are pressing on my spinal cord nerves(L4/5 and S1) sending everything haywire and giving me severe pain.Hooray for a full answer finally after 7 years but still.
My question: what can i do till surgery don't want to live on morphine and the lyrica(which is a nightmare) and sleep all the time... i am on a very long emergency waiting list it seems to see if i can actually have surgery ...i have lost total control of one leg and between that and the other craps and the severe spinal discomfort i am at a loss,already had to give up my job and don't want to get any worse or put on anymore weight for that matter. just any suggestions would be great
I've lost so much already and dont wish to lose anything else .please talk to me even if you don't have a suggestion cause its the patients and their families who live with it not the doctors in most cases
Anyways thank you in advance. I'm a bit of a tragic case but hey my humours intact lol
You are certainly having to shoulder more than your fair share with all this. We are always here to talk to you, so stay in touch with us!
I am wondering where the allergy doctor fits in with the L/5 - S1 diagnosis? I am certainly not querying the diagnosis at all, but those kind of things are usually diagnosed by a neurosurgeon, orthopaedic surgeon or neurologist. Have you been seen by a neurologist? They can do studies to find damaged nerves etc. I guess you may have been seen by at least one or more of these specialists while you were in hospital though.
The other option is to get into a multidisciplinary pain clinic so you can work with a team to control your pain while you wait for the surgery. The problem there is that they also have long waiting lists. Do you know why they are not sure whether you can have surgery?
Sorry for asking so many questions. I am just trying to get a clearer picture
Keep talking to us and let us know how you are going.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
lol sorry for the confusion its ok mary it stumped me too...was sent to allergy doctor to have routine allergy tests as an elimination thing after i got out of hospital,funny thing is i had an entire neurology team in hospital who couldn't work out why my leg had gone weird and yet one genius allergy gp picked it up first meeting
I'm not sure why the query on the surgery?? i'm thinking maybe because i've already lost one leg essentially they are worried about stuffing up the other one with surgery(7 yrs damage already done).
Yep i see my neurologist when i can afford it(280 aud) and i am on govt unemployment money so its a bit hard.
I was seeing a pain clinic when i first got diagnosed with the nerve disease,maybe its worth going back there hmmm
lost faith in th majority of the halth system but its a good idea ty mary
will keep posted and cross your fingers for me that i can have surgery cause ive tried everything else,surgery on the spine im hoping will slow down and make the nerve disease more manageable