Suzy’s story – hypopituitarism | The Pituitary Foundation

Posted: November 17, 2016 at 3:44 am

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When I was between five and six, I attended balletclasses. One day the ballet teacher was observing myarm positions and could not understand why my rightarm did not look the correct shape in certain positions.

The ballet teacher decided to ask my mum if I had anyproblems with it i.e. had I broken it at any time? My mumwas not aware of any problems and had not noticed it.

My mum and dad took me to our local GP, who afterlooking at my arm, decided to refer me to a bonespecialist at the Royal National Orthopaedic Hospital inLondon. I remember thinking it was fun, as I got to goon a train, a few x-rays were taken and afterwards Iwas diagnosed with Ollier disease (discondroplasia ofthe bone) this was managed by a yearly appointment tocheck things had not changed.

At around age of 11 to 12, they found that I also had itin my left ankle. We were told if they did not correct thetwisted ankle it would cause problems when I got olderwith walking.I went into hospital when I was 13 years old. This was ahard thing to deal with but luckily the hospital I went intoStanmore RNOH, Edgware was brilliant. My mum wasable to stay with me as there were parents housing onsite but it was hard on my sisters as my mum was awayfrom home a lot.

I was in hospital for nearly four months, as I caught amajor infection in the wound following surgery. It tookhold quickly. The plaster cast that they put on in theatresuddenly turned yellow; they took me into the treatmentroom, my dad came in and when they took the plaster offthey undone the stitches and the wound spilled infectioneverywhere; I remember my dad saying he could seethe bone beneath - it was bad!

I was put on IV antibiotics, but my veins kept collapsingwhich was very painful, and it would always happen lateat night. I had a fantastic friend; she sat with me everytime they needed to change the needle and she wassuch a wonderful person; she had gone through herown trauma by losing her leg due to cancer, but shewas such a strong person.

The nurses, doctors and domestic staff made my timein there enjoyable I made some good friends who I wishI had stayed in touch with but I was young and thoughtit did not matter.About a year or so after that surgery, I was back inhospital having my leg lengthened as the first surgeryhad left me with a 2 inch limp, so that I would notdevelop a back problem; they made the decision to lengthenit.

I went into surgery and had an external fixate attachedto my right tibia. I stayed in hospital for 3 months.Again, it was made fun but this time I was studying formy GCSEs so I had to do a lot more schooling, but itpassed the time as we had a giggle. We had some roughtimes too, but because most of the kids in there werenot poorly and as it was corrective surgery, we were allable bodied, so we would all take our wheelchairs downto the hospital shop; some would be on crutches, but wewere allowed our own space.

I saw a lot in my time in that hospital but it made methe person I am, because when you witness somebodyelses pain and it is greater than your own, you realisethat there is always someone worse off than yourself.I came home with the fixator still attached and went backto school; they were very supportive and my friendsthere were great, but I got a lot of attention as kids hadnot seen this device before, so they were curious butnever cruel.I lengthened it millimetre by millimetre, so it took alongtime, but once it was done I had no limp and things wereback to normal.

Once all that was finished with I then got on with myschooling; passed my GCSEs and left school. I thenmet 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 nightcollege to learn cake decorating.

My consultant decided to lengthen my ulna bone as it wasshort. So once again I was in Stanmore hospital havinga fixator attached to my arm; once the lengthening wascomplete I had an op to take bone from my hip, as newbone had not grown between the gap; this was painfulas the removal of bone from the hip has to be chiselled.

Then, in early 1999 I was at work and my face suddenlystarted to tingle and went very red and numb in thespace of a couple of hours. I stayed at work and thoughtit was just an infection of some sort but as the daywent on I decided to go to my GP where by he gaveme antibiotics and said it could be the trigeminal nerve,I took them but the problem continued over the nextcouple of weeks and I was back and forward to my GP.When I was pregnant with my son (1997) I had to havea grommet fitted in my ear as it blocked up.

As the GP doc could not think what could be causingthe numbness, he sent me back to Dr OMalley at MiltonKeynes hospital; I went for the appointment and thedoctor decided to order an MRI scan. I had the scanand then went back to see Dr OMalley; I took my dadwith me and we were stunned by what we were beingshown - a tumour growing from the base of my skull thesize of an orange. It had grown up and into the opticnerve and damaged the nerves surrounding the rightside of my face; that is why I had numbness, rednessand a few painful headaches.

I was then referred from there to Oxford hospital where Isaw a Dr Kerr; they did not want to do a biopsy but theybrought in a specialist on tumours connected to Ollierdisease - a Dr Cadu Hudson. I was diagnosed witha chondrosarcoma, which is the rare form of maffuccisyndrome; these two diseases run side by side but itsrare to have both.

They talked us through the steps of how they weregoing to go about sorting the problem as the tumourwas very close to the carotid artery, so it was going tobe difficult to remove.The doctors thought it had been growing for about tenyears; as they are slow growing tumours they did not wantto rush in.

I had a Robbie Williams concert to go to in the September,Neil had brought me the tickets for Christmas; I loveRobbie and really wanted to go, so Dr Kerr said wewould hold off until after then as he knew the op wouldbe difficult - he implied I was to do and experience asmuch as I could. The only trouble was that the tumourwas not going to hold off, so in the May, I was rushed intoOxford hospital with a major headache. I was in over theweekend and Neil had gone home for the weekend asit was my mums 50th party and their 25th anniversary.It was hard for Neil and my family to celebrate it withoutme with them.

Over the weekend the headache got worse. ComeMonday morning, I had had a really bad night and theteam thought the tumour could have been bleeding!! Nopainkiller was working and I was given IV morphine. Iwas in so much pain in the morning, Dr Cadu Hudsonhad to come in as Dr Kerr was on holiday and theywanted to do surgery early that morning; Neil wascalled and he was on his way. They told me the risksthat were involved but I would not let them take medown to surgery until Neil arrived. My mum and dadwere 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 consultantwas phoning Neil to find out how far away he was as itwas getting harder to hold off.

When Neil arrived, I then felt I could have the surgeryas I could relay things to him and say what I needed tosay to him and Ryan. I had the surgery; it went well butthe damage was already done to my eye, eye lid andface and I was in intensive care for three days - thesedays I dont remember. It took only ten days after that torecover and I went home to recover further.Once again, I had very good help and treatment atOxford from the nurses and doctors and I think theworld of Dr Cadu Hudson and Dr Kerr; they are veryclever people and special surgeons.I made it to the Robbie concert, three months aftersurgery and it was fantastic.I was kept a very close eye on at the clinic but theydecided a course of radiation would be needed to makesure that the tumour had stopped growing; but thething was, the radiation could not be done with normal radiation, I had to go to Paris for Proton and Photontherapy, at the IGR hospital Paris. The governmentwould pay for treatment but we had to fund the eightweek stay so family, friends, work friends and the localpaper helped find the money by fund raising, so I couldbe comfortable out there and that our son could belooked after while Neil was with me.

It was a hard time as we were away from our four yearold son, in a foreign country trying to communicate ourproblems when I did not speak French; Neil knew somebut only the kind of stuff for holiday visits, not hospitaltranslation. We had help from a lovely multilingual manin the hospital but it was very hard having radiation andnot 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 theProton therapy at the IGR, and then we moved to thesecond hotel so I could have the second part of theradiation Photon therapy.

When I got back from Paris I was then referred to the endocrinology unit at the Churchill Radcliffe hospitalwhere I was kept a close eye on, as I was developingsymptoms of pituitary gland failure. They diagnosedhypopituitarism and I was gradually put on the relevanttablets for each part of pituitary shutdown.I am now on thyroxin, hydrocortisone, Premique HRTand growth hormone. I have a neck problem also due tothe radiation, so I am on pregabalin and ranitidine dueto the side effects of the pregabalin.Living with this pituitary problem is harder thandealing with the tumour itself and with my bonedisease put together, I am a different person. When Igot married to Neil six years ago, I was not well, butI weighed 10 stones 3lbs. Now I have no control overmy weight and I am 16 stones and 10lbs. You mightsay (and often I hear people say) But you are alive!!Yes I am, but its easy for them to say that as they are not inmy situation. It is a daily battle to remember to take mydrugs and to stay positive; deep depression, fatigue,keeping up with my son and not being able to get aboutdue to muscle fatigue. As I have low levels of growthhormone, this is being replaced slowly due to thepressure 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 employerand friends, but have just been made redundant soam worried now if any employer will employ me. Mypositivity has come hugely from my husband Neil; hehas had to go through a lot of changes with me and stillhe is here supporting me.

I would like my story to be told as I feel I havebeen through a lot, but I still keep smiling, fundraising, working and generally staying positiveand as I said before There is always someonein more pain than you.If I can bring awareness and support, any research intoall of the diseases I have I will work to do that.

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Suzy's story - hypopituitarism | The Pituitary Foundation

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