Natz - Edinburgh, Scotland

My name is Diane and I live in Edinburgh, Scotland. My Daughter, Natalie, likes to be called Natz
Almost a year ago today Natalie was a happy 14yr old girl doing the things teenagers love - listening to music, going to concerts, babysitting her nieces & nephews, shopping with her older sisters and me. Then in August 2002 our world fell apart; Natz went into hospital to have an operation on her left foot; she had a small lump on the inside, which hurt her when her trainers rubbed against it or if she ran or jumped. This began after a fall, which sprained her ankle. and other treatments had not helped. After an x-ray was taken of her foot, the doctor explained that there was a wee growth on the inside of her foot and that this could easily be removed. Natz would have the op and be home the same day. The operation went well, we thought when we returned home later that evening, and Natalie had a big padded bandage right up to her knee. All we could see was her toes. We were given a leaflet to tell us the do's & don'ts, one of which said DO NOT WEIGHT BEAR FOR THE FIRST TEN DAYS. Restrict to gentle movement of the foot and toes. We did this and a few days later I saw that Natalie's toes were very blue in colour, but thought it was some bruising after the surgery.

As Natalie was in a lot of pain I took her to my GP, who undid the bandage and checked for an infection; it was fine, she said, and replaced the bandage, but he doctor observed that Natz's foot was very cold. However we went home and I tried everything to put some heat into her foot, but nothing worked. We visited the GP on another two occasions but were just sent back home. I also phoned the hospital but they said if I was worried we should just go to casualty. I didn't want to seem like a paranoid mother so waited till our appointment ten days later when the stitches were removed. I spoke to the consultant about the coldness of her foot and the funny blue colour. He took a quick look and said "the wound's healing nicely… see you again in six weeks". So off we went home with Natalie still in pain and not being able to put any weight on her foot at all; she had to use crutches.

Five weeks after the op to remove the growth, which we were now told was a Neuroma (a benign growth of a nerve) Natalie was in so much pain and her leg had swollen so much that I took her to casualty. There they discovered she had Deep Vein Thrombosis. We couldn't believe it; she was only 14yrs old. People get that on long flights, we thought, so how could this be? Anyway Natz was put on Warfarin to thin the blood with daily blood tests to check her INR. Thankfully she stopped taking it in March this year (2003). At the six week check up the doctor could give us no reason why someone of 14yrs should have DVT. Maybe it was because she was immobile for such a long time he said (I wanted to slap him and say "you told her not to weight bear for the first 10 days and when I phoned your advice was to elevate the foot, you stupid man"). But I restrained myself and just asked, "why does Natalie's foot go a funny colour every time she puts her foot down? It's like the blood is getting down but can't get back up". Now this is a good one… He looked at it and said, "Ah! Classic case of RSD. You've probably read about it in magazines". My daughter and I just looked at each other and said quietly, "What?"
When we left the room I asked a nurse for any info she had on RSD; she also said, "What? I'm sorry I don't have any and I don't know what it is". So we went onto the Internet to find out what this thing was, and boy were we surprised.

Natz is now lying flat in bed with a spinal leak & low pressure headache. It took the hospitals until now to find out what was causing the headaches and sickness. She had two MRI Scans - the first didn't show anything as they didn't use dye - the second (with dye) showed she has a leak. The CT scan of her head didn't show anything either, so, before we knew the cause of the headache etc., she was told to get up out of bed every day for physio and that she would need to work through the pain. She was in total agony when she tried to get up, and then she was physically sick. I was told by the nurses "you have to be cruel to be kind and if she doesn't do her exercises she will be bedridden the rest of her life". I didn't know what to do when she cried in pain so I would burst into tears, then she would say "I'm sorry mum. I don't want to upset you" How can we ever trust the medical profession again?

So much has happened I don't know who is to blame anymore… the first doctor, the second doctor, the hospitals, the GP or me for letting her have the operation in the first place.

Diane (mother of one of the bravest little girls in the world)
& Natalie (Natz)

Update on Natz

Hello,my name is Diane.
I have a
I wrote to the notice board a few months back to tell them about my 15yr old daughter called Natalie who has RSD in her left leg - so this is a kind of update.
On the 9th of June this year (2003) Natalie went to Glasgow Yorkhill Childrens Hospital,to have a sympathetic Block. We hoped this would help the RSD in her leg.
Unfortunitaly she suffered a spinal leak which took 7 weeks to discover. This was found found by way of an MRI scan at the Western General Hospital,Edinburgh. It showed that the base of her brain had sunk because of lack of the fluid that had been leaking causing her intense pain. If she even had to lift her head the pain would cause her to be sick. The problem was the doctors could not find where in the spinal cord it was leaking from,as during the block the doctor went into three bits of her back. One of the ways to try and find the hole was to do a test with a special dye called Isotope; this was injected into the spine just like an epidural. Then a C.T scan was taken.
This still wasn't enough to find the leak and Natalie remained bedridden for another 3-4 weeks.
The next test to do was called a Myelograme but the worry for me was that they needed to sit Natalie up for at least 30 minutes because the test uses oil based radio active dye and may have caused problems if it stayed in the brain while she was lying down. They thought about sending us down to London to a hospital that had knowledge of spinal leaks but, in the end, they decided to go ahead with the test up here - keeping in contact with the London Doctors.
This test was the same as the Isotope; it gets injected into the spine like an epidural.( I forgot to mention that before all these tests she did have a blood patch to try and fix the hole but it was unsuccesful,and the measure of spinal fluid in her spine was only 5, when it should be between 10-2). Anyway the last test showed that the fluid had been draining into a cyst in the spinal cord which may be why the hole couldnt be found.
At long last, after a 17 week stay in hospital, the leak has now healed (we think) and my daughter can now sit, stand and very slowly start to walk again. The doctors have told us however that she may now be left with chronic head pain as well as the chronic leg pain of RSD. The pain people suffer because of this monster is terrible, not only for the person that is suffering. It is very hard to endure watching a loved one suffering.

My thoughs are with all the people who suffer from RSD.And the people who Care.

I wrote this for my Daughter,To tell her just how proud she makes me... I'm so glad you're my daughter,
your loving mum, Dianexx