As a veteran of the following personal desperate fiasco, I am in total sympathy with McRobb and allis563ca...
As I kept my own record of the comings & goings, here's 'my story'...
2002 – March – Motorcycle Accident in Luxembourg, C3 neck-break, T4/5 Complete Spinal Cord Injury. Surgeons repaired my neck break, so I'm 'only' a Paraplegic. Repatriated to local Spinal Unit in UK after 3 months in Intensive Care in Luxy (Thanks EU Medical Policies).
2004 - March – Released from Odstock Spinal Hospital (Salisbury UK) after unnecessarily long wait for suitable accommodation to be found.
2008 - March – Pressure wound noticed, Stage 4! I know, mea culpa annat - but there's no way I can personally detect skin discolouration in the area adjacent to my anus. I've tried all manner of lighting, magnification etc etc, but it just isn't physically possible.
Admitted to my local NHS hospital, Queen Alexandra Portsmouth - HUGE mistake, as they, like most of the NHS in the UK, are not geared up for Paraplegics! 20th Debridement 1, 31st Debridement 2.
Discharged to home, advised to use plenty of bed-rest (but no-one said total) on NHS issue Profiling Air Mattress. Care of sore to be managed by District Nurses - via lots of different types of dressings. Sore healing seemed to go quite well, as the wound got progressively smaller.
2009
July – Informed by Odstock (Spinal Centre) Consultant/Skin Viability Nurse that wound would never heal completely in it's current state, as it required surgical intervention, due to scar tissue/partial healing of the wound bed. Referred back to local NHS Hospital Plastic Surgery Department to assess said intervention. Also informed that I should have been on TOTAL bed-rest ever since wound was discovered!
Due to waiting lists for cosmetic surgery (?) or plain Admin cock-up (?) I had to wait until...
Dec 8th – Plastic Surgeon Consultation 1 – Says I need a CT Scan before he goes any further as he suspects the wound is not healing because of underlying infection. Assures me that I am now in good hands, and not to worry! Assuming the CT scan is clear, he will plan for me to have Flap Surgery to close the wound.
2010
February - Chase up the CT Scan. Consultant has forgotten to request it - "good hands" indeed. Then get offered an MRi Scan. When documentation arrives, I query the fact that I have an Intrathecal Baclofen Pump (buried in tummy area), which I believe rules out an MRI, as it's electrically controlled. Much to-ing and fro-ing over whether I should go to Salisbury, where the Odstock Spinal Unit can switch off the pump, I can get MRI'd, then pump can get switched back on...eventually the decision is made that I can be CT scanned locally after all (As per the original plan from Dec '09)
March 24th CT scan at last...
April 19th Results of CT scan = Negative for infection. I request new Consultant, as I wasn't impressed with the "good hands" of the previous model - a request that was not well received. Eventually get seen by a new Consultant Plastic Surgeon, who tells me that Flap Surgery is rarely successful, horrendous when it isn't, that I need further wound debridement and that I will need regular periods of debridement/bed-rest recovery for the rest of my life - Which literally reduces me to tears. My sons wedding was already planned for Sept 2010, and strangely enough - I really really wanted to attend...
May 21 - Debridement - NIGHTMARE!!! I'm pretty sure the guy who did it had the notes mixed up, because he essentially removed everything - healed flesh, the lot - back to square 1.
May 23rd - Venturi vacuum pump therapy started at home by District Nurses.
June – Admitted to local NHS Hospital (QA)as an emergency with the wound now pouring out blood & pus.
July-Sept - In hospital, while they try and find out source of infected pus. Yet another CT scan reveals that my left leg has become dislocated somehow, the femur head has decomposed & my hip socket has become a playground (and by 'play' I mean 'breeding') for Strep Millerii...oh, and there are now traces of Osteomyelitis in my Hip.
Eventually told, after consultations with specialist infection hospital in Oxford and my Spinal Unit in Salisbury, that I need a life-threatening operation (!) and that I will almost certainly lose my leg...unhappy days.
Oct
Admitted to Nuffield Infection Unit, where the reception is warm, friendly & reassuring! After a few checks, I am assured the Op is not "life-threatening" and they see no reason why I should lose the leg.
25th Totally successful Operation. Hip socket flushed & filled with harvested (I hate that term) muscle, osteomyelitis found to be trivial, reconstructive flap surgery to pressure sore site perfectly carried out. Plastic Surgeon tells me she is very proud of her handiwork, and that I can resume a 'normal' life once the standard wheel-chair sitting building-up protocol has been observed.
Dec 23rd – Discharged from local NHS Hospital for Christmas (YAY)...with diarrhoea (Booooo).
2011
Pathetic attempt from QA Enterologist to sort out the diarrhoea, involving inconclusive C-Diff tests and endoscopy.
Interweb research provides me with the solution - pro-biotics together with Saccharomyces Boulardii (Probio7 from Holland & Barrett if I'm allowed to advertise). The same research also showed me that my local NHS Hospital hadn't followed the correct protocol to prevent me from contracting a C-Diff infection (I was a prime candidate, as I'd had 12 weeks anti-biotics following the fairly serious Operation) and that they hadn't followed the correct protocol to test me to see if I had actually contracted C-Diff (Which 12 weeks of diarrhoea should have tipped them off about).
August – Diarrhoea completely eradicated after just 6 weeks of Probio7, I am finally up and about! Life is returning to pre-March 08, except that I now have regular visits from District Nurses to check the wound site. I can do everything - spend most of the day in the chair, merrily pressure-lifting (as I always did), drive my car
LIVE again!
(With hindsight, the 7 months I spent on almost total bed-rest with diarrhoea probably helped the healing process of my post-surgery ischial/sacral area - gave it a chance to 'bed-in' maybe?)
Sept - I attended my Sons wedding - YAY! OK, so I reckon I looked like Danny DeVito as The Penguin, wearing my dress suit crumpled up into my wheelchair, but still - I was there!
So, there you have it...sorry it was a long story, but they often are. Three 'wasted' years, with my bedroom in my living room so I could at least compute, watch TV, play PS3 etc etc - I live alone, so nurses & carers have been pretty much my only regular companions.
What did I learn?
Obviously avoid the 'standard' NHS in the UK - they just weren't up to the specialist care I required.
Never assume the so-called 'professionals' are... well... professional. When I was working and I made a promise - I kept it...or kept everyone advised if I couldn't, for whatever reason. I know, I know, they're overworked & underpaid & they try...
Had I assumed they were incompetent and kept on their cases, I might have got resolution quicker, who knows?
Had I only dealt with my specialised Spinal Unit, I know I'd have had a better outcome - I know now.
I haven't got any idea what specialised Spinal care is available in the US of A, but whatever there is, I'd suggest grabbing it and shaking it and not letting go until you're happy...
Edited by Raspberry, 03 November 2011 - 03:01 AM.
0
Top
