Suzy's story - hypopituitarism
When I was between five and six, I attended ballet classes. One day the ballet teacher was observing my arm positions and could not understand why my right arm did not look the correct shape in certain positions.
The ballet teacher decided to ask my mum if I had any problems with it i.e. had I broken it at any time? My mum was not aware of any problems and had not noticed it.
My mum and dad took me to our local GP, who after looking at my arm, decided to refer me to a bone specialist at the Royal National Orthopaedic Hospital in London. I remember thinking it was fun, as I got to go on a train, a few x-rays were taken and afterwards I was diagnosed with Ollier disease (discondroplasia of the bone) this was managed by a yearly appointment to check things had not changed.
At around age of 11 to 12, they found that I also had it in my left ankle. We were told if they did not correct the twisted ankle it would cause problems when I got older with walking. I went into hospital when I was 13 years old. This was a hard thing to deal with but luckily the hospital I went into Stanmore RNOH, Edgware was brilliant. My mum was able to stay with me as there were parents housing on site but it was hard on my sisters as my mum was away from home a lot.
I was in hospital for nearly four months, as I caught a major infection in the wound following surgery. It took hold quickly. The plaster cast that they put on in theatre suddenly turned yellow; they took me into the treatment room, my dad came in and when they took the plaster off they undone the stitches and the wound spilled infection everywhere; I remember my dad saying he could see the bone beneath - it was bad!
I was put on IV antibiotics, but my veins kept collapsing which was very painful, and it would always happen late at night. I had a fantastic friend; she sat with me every time they needed to change the needle and she was such a wonderful person; she had gone through her own trauma by losing her leg due to cancer, but she was such a strong person.
The nurses, doctors and domestic staff made my time in there enjoyable I made some good friends who I wish I had stayed in touch with but I was young and thought it did not matter. About a year or so after that surgery, I was back in hospital having my leg lengthened as the first surgery had left me with a 2½ inch limp, so that I would not develop a back problem; they made the decision to lengthen it.
I went into surgery and had an external fixate attached to my right tibia. I stayed in hospital for 3 months. Again, it was made fun but this time I was studying for my GCSEs so I had to do a lot more schooling, but it passed the time as we had a giggle. We had some rough times too, but because most of the kids in there were not poorly and as it was corrective surgery, we were all able bodied, so we would all take our wheelchairs down to the hospital shop; some would be on crutches, but we were allowed our own space.
I saw a lot in my time in that hospital but it made me the person I am, because when you witness somebody else’s pain and it is greater than your own, you realise that there is always someone worse off than yourself. I came home with the fixator still attached and went back to school; they were very supportive and my friends there were great, but I got a lot of attention as kids had not seen this device before, so they were curious but never cruel. I lengthened it millimetre by millimetre, so it took along time, but once it was done I had no limp and things were back to normal.
Once all that was finished with I then got on with my schooling; passed my GCSEs and left school. I then met my husband; I was age 16 and he lived in Harlow, Essex and I commuted to Harlow every weekend; during the week I worked in a bakery and went to night college to learn cake decorating.
My consultant decided to lengthen my ulna bone as it was short. So once again I was in Stanmore hospital having a fixator attached to my arm; once the lengthening was complete I had an op to take bone from my hip, as new bone had not grown between the gap; this was painful as the removal of bone from the hip has to be chiselled.
Then, in early 1999 I was at work and my face suddenly started to tingle and went very red and numb in the space of a couple of hours. I stayed at work and thought it was just an infection of some sort but as the day went on I decided to go to my GP where by he gave me antibiotics and said it could be the trigeminal nerve, I took them but the problem continued over the next couple of weeks and I was back and forward to my GP. When I was pregnant with my son (1997) I had to have a grommet fitted in my ear as it blocked up.
As the GP doc could not think what could be causing the numbness, he sent me back to Dr O’Malley at Milton Keynes hospital; I went for the appointment and the doctor decided to order an MRI scan. I had the scan and then went back to see Dr O’Malley; I took my dad with me and we were stunned by what we were being shown - a tumour growing from the base of my skull the size of an orange. It had grown up and into the optic nerve and damaged the nerves surrounding the right side of my face; that is why I had numbness, redness and a few painful headaches.
I was then referred from there to Oxford hospital where I saw a Dr Kerr; they did not want to do a biopsy but they brought in a specialist on tumours connected to Ollier disease - a Dr Cadu Hudson. I was diagnosed with a chondrosarcoma, which is the rare form of maffucci syndrome; these two diseases run side by side but it’s rare to have both.
They talked us through the steps of how they were going to go about sorting the problem as the tumour was very close to the carotid artery, so it was going to be difficult to remove. The doctors thought it had been growing for about ten years; as they are slow growing tumours they did not want to rush in.
I had a Robbie Williams concert to go to in the September, Neil had brought me the tickets for Christmas; I love Robbie and really wanted to go, so Dr Kerr said we would hold off until after then as he knew the op would be difficult - he implied I was to do and experience as much as I could. The only trouble was that the tumour was not going to hold off, so in the May, I was rushed into Oxford hospital with a major headache. I was in over the weekend and Neil had gone home for the weekend as it was my mum’s 50th party and their 25th anniversary. It was hard for Neil and my family to celebrate it without me with them.
Over the weekend the headache got worse. Come Monday morning, I had had a really bad night and the team thought the tumour could have been bleeding!! No painkiller was working and I was given IV morphine. I was in so much pain in the morning, Dr Cadu Hudson had to come in as Dr Kerr was on holiday and they wanted to do surgery early that morning; Neil was called and he was on his way. They told me the risks that were involved but I would not let them take me down to surgery until Neil arrived. My mum and dad were not told how bad it was due to them being away, so I wanted him there to help me make some important decisions. I was so scared and confused; the consultant was phoning Neil to find out how far away he was as it was getting harder to hold off.
When Neil arrived, I then felt I could have the surgery as I could relay things to him and say what I needed to say to him and Ryan. I had the surgery; it went well but the damage was already done to my eye, eye lid and face and I was in intensive care for three days - these days I don’t remember. It took only ten days after that to recover and I went home to recover further. Once again, I had very good help and treatment at Oxford from the nurses and doctors and I think the world of Dr Cadu Hudson and Dr Kerr; they are very clever people and special surgeons. I made it to the Robbie concert, three months after surgery and it was fantastic. I was kept a very close eye on at the clinic but they decided a course of radiation would be needed to make sure that the tumour had stopped growing; but the thing was, the radiation could not be done with normal radiation, I had to go to Paris for Proton and Photon therapy, at the IGR hospital Paris. The government would pay for treatment but we had to fund the eight week stay so family, friends, work friends and the local paper helped find the money by fund raising, so I could be comfortable out there and that our son could be looked after while Neil was with me.
It was a hard time as we were away from our four year old son, in a foreign country trying to communicate our problems when I did not speak French; Neil knew some but only the kind of stuff for holiday visits, not hospital translation. We had help from a lovely multilingual man in the hospital but it was very hard having radiation and not being able to understand the instructions. Again the treatment and care we received was fantastic; we had two hospitals to visit- one that gave me the Proton therapy at the IGR, and then we moved to the second hotel so I could have the second part of the radiation Photon therapy.
When I got back from Paris I was then referred to the endocrinology unit at the Churchill Radcliffe hospital where I was kept a close eye on, as I was developing symptoms of pituitary gland failure. They diagnosed hypopituitarism and I was gradually put on the relevant tablets for each part of pituitary shutdown. I am now on thyroxin, hydrocortisone, Premique HRT and growth hormone. I have a neck problem also due to the radiation, so I am on pregabalin and ranitidine due to the side effects of the pregabalin. Living with this pituitary problem is harder than dealing with the tumour itself and with my bone disease put together, I am a different person. When I got married to Neil six years ago, I was not well, but I weighed 10 stones 3lbs. Now I have no control over my weight and I am 16 stones and 10lbs. You might say (and often I hear people say) “But you are alive!!” Yes I am, but it’s easy for them to say that as they are not in my situation. It is a daily battle to remember to take my drugs and to stay positive; deep depression, fatigue, keeping up with my son and not being able to get about due to muscle fatigue. As I have low levels of growth hormone, this is being replaced slowly due to the pressure in my brain increasing the first time round. I am not a person to sit around and feel sorry for myself; I have continued to work with the help of my employer and friends, but have just been made redundant so am worried now if any employer will employ me. My positivity has come hugely from my husband Neil; he has had to go through a lot of changes with me and still he is here supporting me.
I would like my story to be told as I feel I have been through a lot, but I still keep smiling, fund raising, working and generally staying positive and as I said before “There is always someone in more pain than you”. If I can bring awareness and support, any research into all of the diseases I have I will work to do that.