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MY STORY UPDATE 2015

2015-01-05

MY STORY UPDATE 2015

 

As some of you know, in the middle of December I had to go into hospital fairly suddenly, as the skin on my CRPS/RSD left leg had started to break down rapidly. I had been recently been keeping in contact with the vascular surgeon who had amputated my right leg those 8 years ago in September 2006, as I wanted to ensure that he was well aware that the CRPS had spread to my left leg. This is My Story Update 2015.

 

I went into hospital on Wednesday 10th December 2014 as an emergency patient, as the leg on the skin on my left CRPS/RSD leg had irretrievably broken down. What I mean by this is that the skin on the left leg had gone from being extremely dry, withered and cracked due to the massive swelling that was present and had been present for several months to none existent skin and just a wet and soggy mess. As you may recall in one of my blogs, entitled ‘CRPS BREAKING NEWS’ I said that I had seen the surgeon who had 8 years ago amputated my right CRPS/RSD leg, and he had said that I was facing an above knee amputation if ulcers started appearing or if I couldn’t take the swelling, pain and lack of use. I thought that I would have 1 last great Christmas and New Year with my 1 leg getting used to the idea of becoming a bilateral amputee before facing the surgery in the New Year.

 

Hospital Emergency Sign

Hospital Emergency Sign

 

However, the CRPS had other plans for me! At the beginning of December, I started to notice the skin on the leg looked a little softer with an almost jelly-like appearance. There were no holes or tears at this point just the dry, cracked and elephant like skin looked soft but not on the top it looked soft underneath the outer layer of skin. At first I didn’t think much of it, but the next day I looked down and there was what I call a liquid run, as if you had been painting something and there was a spot of paint that dribbled’ or was running down the rest of the drying paint. My heart literally sank at this point and I remembered sitting in my wheelchair and bursting into tears. I knew that the skin was beginning to ‘break down’ or disintegrate and I knew from last time it happened which was on my right leg that it would only be a matter of time before ulcers would appear and I would have to start putting incontinence squares on the floor to catch the ‘drips’ from the open wounds on the leg. This was something I was not wanting or looking forward to in the least. Memories of what happened to the right leg kept flashing in front of my eyes, could this really be happening all over again to me? Questions raced through my brain like ‘Why me?’ ‘Why does it have to happen again?‘ ‘Why do I have to go through all the embarrassment of going into a shop or pub or restaurant and people saying “What’s that horrible smell like rotting meat?

 

Questions - What? Why? When? How? Who?

Questions – What? Why? When? How? Who?

 

I told my husband about the leg that had become jelly-like and he lifted up the bottom of my long skirt to look at the lower leg and stared for what seemed like an age but probably was in fact only a few moments and just said ‘Oh my goodness, not again.’ I think that moment will remain in my head for a very long time. However we both knew that we had to contact the surgeon to let him know that the leg’s skin was beginning to break down and what he recommended doing. When the skin began to split and ulcerate on the right CRPS/RSD leg it took a few months to totally breakdown on the whole leg, so my husband, the surgeon and I all thought that we could last over Christmas and New Year and that we would schedule the amputation surgery for the beginning of January. I felt happier that I could at least spend Christmas at home with my family, so I set about buying presents, writing Christmas cards and helping my husband decorate the Christmas tree and house.

 

Christmas Tree At Home

Christmas Tree At Home

 

However, that great plan of ours just wasn’t to be 🙁 By the 8th December so only a few days after the start of the skin breakdown, I was using the incontinence squares (inco sheets) on the floor to catch all the drips of goo that were literally running down my leg. Ulcers started appearing and the skin was fast flaking off revealing the soft stuff underneath, so we rang the surgeon’s secretary who was really helpful and concerned to let her know that we didn’t think the leg would actually last until the New Year, so she managed to speak to the surgeon who suggested we go to the hospital to A & E as there was no way to actually make a planned admission that quickly.

 

After much anger, heated arguments and plenty of tears on Wednesday 10th December 2014 my husband took me into Manchester Royal Infirmary Accident & Emergency. After giving my details to the reception we sat in the waiting room and I made sure that we sat away from everyone else because I didn’t want anyone to see or smell my increasingly horrid looking and smelling leg. It wasn’t long before I was called through to the triage unit where I had to lift my skirt which was now sticking to the wet goo from my leg causing me even more sharp, intense burning pain from the touch of the skirt. I was so embarrassed, I really was. I didn’t want the nurses to think that we had simply left this ‘mess’ of a leg to get so bad before coming into hospital. I explained to her about the Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy and how the leg and got to this goo stage in less than a week. The nurse appeared a little shocked but said nothing just left the room and came back after a few minutes letting me know that I was to go to a small side room which is where we waited for about 6 hours. Eventually after bloods were done etc I was sent to a surgical assessment ward where they basically just did the admittance paperwork. After 4 hours in this area I finally got to the vascular ward where I was allocated a side room. I think the state of my leg was enough to knock other patients sick so being in a side room meant I was out of sight.

 

SEE THE GALLERY FOR PICTURES OF THE STATE OF LEG -Please be advised of the Graphic Content 

 

I spent the next few days getting used to the hospital regime again, awake at 05.50am for blood pressure, Controlled drugs (Oxycodone in my case) at 07.00am and then breakfast trolley at 08.00am which I never ate anything from! The first day I saw around 5 or 6 male junior doctors, the 1st of which looked at my ever dripping green gooey leg and said ‘Well, we’ll put a dressing on that, give you some antibiotics and send you home.‘ What????!!! I started to explain that I couldn’t have any dressings over it because of the amount of excruciating agony I would be in just putting the  bandage and dressing on that I couldn’t do it. So I began the explanation of CRPS and I just knew he wasn’t listening, so I pushed one of my CRPS information cards under his nose and told him to ‘Read it!!!‘ Just at that point I caught a glimpse of the surgeon I felt slightly happier now that he was there. He popped his head into my room and said in a happy voice ‘Monday alright with you then? Do you think you can last until then?‘ Just as if you were booking a car in for a service!!! I couldn’t ‘t help but smile at the situation 🙂

 

CRPS awareness set view 2

CRPS awareness set

 

I saw the surgeon a couple of times in those few days and saw the junior doctors every day. But then a spanner was thrown into the works when I eventually saw the anaesthetist who would be at the surgery and he told me that he wanted the amputation done with just an epidural. I flipped out literally, I began trembling and crying so hard my husband had trouble calming me down. Me, awake during an above knee amputation? I know many surgeries and operations are performed under epidural, but I kept remembering last time and the amount of adrenaline running through my body that I was jumping off the table and I just didn’t want that happening again. His reason for not wanting me to have a General Anaesthetic  was that I had previously had a tracheostomy and pneumonias and he didn’t know the state of my lungs and trachea. So a laryngoscopy (camera put up your nose and pushed down through to the back of your throat to see the voice box, trachea and nasal areas) was ordered before making his final decision. This was done the day before the surgery and everything was found to be perfectly ok, so in my mind there was no reason not to let me go to sleep for the surgery.

 

On Monday 15th December 2014, 2 days before my birthday and 10 days before Christmas Day, I had my 2nd above knee amputation under General Anaesthetic because of the horrid and excruciatingly painful condition Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy. I lost a fair amount of blood during surgery and the surgeon told me that usually amputations are done when there is bad flow of blood to the legs whereas in my case it wasn’t the blood flow that was the problem, it was the CRPS/RSD that had caused irretrievable skin breakdown and ulcers. I spent a further 3 days including my birthday in ICU and HDU and then was sent back to the vascular ward where I remained until coming home on 23rd December 2014. I saw physiotherapists, amputation nurses and an Occupational Therapist during those last days on the ward having to learn to do things differently now that I have no legs to help me get places like the loo and my wheelchair.

 

I was really glad and pleased to get home when I did so I could be at home for Christmas and New Year and spend it with my wonderful husband and my dog Geronimo.

 

My 2 Boys Together

My 2 Boys Together!

 

Yes things are a lot harder now to do such as getting in and out of bed, on and off the sofa, in and out of my wheelchair and of course there is the loo to consider! Fortunately my right leg (I’m not so keen on the correct term ‘stump’) that’s left over even though it is very short and I still suffer with CRPS and phantom limb pain, it is quite strong and so has helped me do the transfers.

 

Before finishing My Story Update 2015, I want to THANK ALL OF YOU who contacted me to wish me a speedy recovery, good luck and best wishes. I also want to specifically THANK all of my family especially my husband and also some CRPS/RSD sufferers who were in contact with me every day before surgery and afterwards, who tried to keep me level headed throughout the whole of the time even though they were battling with their own pain and problems; Karen MacDonald, Sadie Brunton, Sophie Etheridge, Anna Rice-Mahon, Jo Waterland and Anjanette & Keith from American RSD Hope.

 

Thank You All!

Best Wishes, Victoria x

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. cort Reply

    Fibromyalgia and CFS Sufferer Cort Johnson has sent in a link to his blog regarding Autoimmunity and CRPS/RSD. This is the link to his blog:-

    Autoimmune approaches to CRPS and other pain conditions

    http://www.cortjohnson.org/blog/2014/08/01/autoimmune-research-new-options-chronic-pain/

  2. Brenda Reply

    I fell your pain I have CRPS/RSD.I was injured on my job in 1994. I’ve have had people look at me an say there isn’t anything wrong with you.My injury was to my left arm shoulder. I had a dislocated shoulder when I was taken to the ER.An in 1 week my arm turned black/purple color cold hot then I couldn’t even stand to touch my on arm .The pain was the most horrible pain I have ever had in my life. I went from a nurse working 16hrs shift to someone I didn’t even know myself. I still had three children at home to take care of an now I couldn’t work anymore. So for two an half years I went to so many Dr that I lost count I had to learn to live on very little income. I was sent to a surgeon an she was an older Dr. who took one look an knew what was wrong. But by then it was to late the damage was done. I still have pain the spinal stimulator has help some but the pain never goes away completely. I will loved to help out anyway I can to get more research done.Even in the USA. there isn’t enough awareness of this horrible DISEASE. MAY GOD BLESS YOU AND YOUR HUSBAND.Cant wait to read your book

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